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Dr. Saghafi, You Answered A Question For Me About My
Question: Dr. Saghafi, you answered a question for me about my TIAs and vasovagal symptoms. That was in March 2017. Now it is February 2019 and I am still having almost exactly the same problems, but without the flushing.
I have had 50 TIAs in the past two years. Most recently, I was in the hospital for 23 days starting on 1/11/2019 with severe Legionella pneumonia. Since 1/15/2019, I have had daily episodes with the following symptoms:
- dizziness (vertigo) or lightheadedness
- sudden, severe weakness throughout my body, including weak grip and weak legs
- slurred (or garbled) speech, sometimes but not always
- difficulty walking, with poor balance and jerky steps
- sleepiness, sometimes sleeping for up to 5 hours and unable to be aroused, after which I wake up feeling fine
- normal blood pressure to start, then high blood pressure and fast heart rate
- sometimes have GERD or bowel dump
Since speaking to you in 2017, I have been diagnosed with Systemic Lupus Erythematosis (dsDNA Ab EIA 305, Antinulear Ab Titer 1:80), CNS Vasculitis (IR Angiogram Cerebral), Sjogrens Disease (SSA Ab 55), Hypercoagulable State (cardiolipin IgM 17,9, Sedimentation Rate 39, Firinogen 434), and Autoimmune Hepatitis (Smooth Muscle AB Titer 1:40).
Which of these diagnoses could be causing my problems? Should I go ahead with Cytoxan Infusions (for Lupus) and Xarelto (for hypercoagulable state)?
I have had 50 TIAs in the past two years. Most recently, I was in the hospital for 23 days starting on 1/11/2019 with severe Legionella pneumonia. Since 1/15/2019, I have had daily episodes with the following symptoms:
- dizziness (vertigo) or lightheadedness
- sudden, severe weakness throughout my body, including weak grip and weak legs
- slurred (or garbled) speech, sometimes but not always
- difficulty walking, with poor balance and jerky steps
- sleepiness, sometimes sleeping for up to 5 hours and unable to be aroused, after which I wake up feeling fine
- normal blood pressure to start, then high blood pressure and fast heart rate
- sometimes have GERD or bowel dump
Since speaking to you in 2017, I have been diagnosed with Systemic Lupus Erythematosis (dsDNA Ab EIA 305, Antinulear Ab Titer 1:80), CNS Vasculitis (IR Angiogram Cerebral), Sjogrens Disease (SSA Ab 55), Hypercoagulable State (cardiolipin IgM 17,9, Sedimentation Rate 39, Firinogen 434), and Autoimmune Hepatitis (Smooth Muscle AB Titer 1:40).
Which of these diagnoses could be causing my problems? Should I go ahead with Cytoxan Infusions (for Lupus) and Xarelto (for hypercoagulable state)?
Dr. Saghafi, you answered a question for me about my TIAs and vasovagal symptoms. That was in March 2017. Now it is February 2019 and I am still having almost exactly the same problems, but without the flushing.
I have had 50 TIAs in the past two years. Most recently, I was in the hospital for 23 days starting on 1/11/2019 with severe Legionella pneumonia. Since 1/15/2019, I have had daily episodes with the following symptoms:
- dizziness (vertigo) or lightheadedness
- sudden, severe weakness throughout my body, including weak grip and weak legs
- slurred (or garbled) speech, sometimes but not always
- difficulty walking, with poor balance and jerky steps
- sleepiness, sometimes sleeping for up to 5 hours and unable to be aroused, after which I wake up feeling fine
- normal blood pressure to start, then high blood pressure and fast heart rate
- sometimes have GERD or bowel dump
Since speaking to you in 2017, I have been diagnosed with Systemic Lupus Erythematosis (dsDNA Ab EIA 305, Antinulear Ab Titer 1:80), CNS Vasculitis (IR Angiogram Cerebral), Sjogrens Disease (SSA Ab 55), Hypercoagulable State (cardiolipin IgM 17,9, Sedimentation Rate 39, Firinogen 434), and Autoimmune Hepatitis (Smooth Muscle AB Titer 1:40).
Which of these diagnoses could be causing my problems? Should I go ahead with Cytoxan Infusions (for Lupus) and Xarelto (for hypercoagulable state)?
I have had 50 TIAs in the past two years. Most recently, I was in the hospital for 23 days starting on 1/11/2019 with severe Legionella pneumonia. Since 1/15/2019, I have had daily episodes with the following symptoms:
- dizziness (vertigo) or lightheadedness
- sudden, severe weakness throughout my body, including weak grip and weak legs
- slurred (or garbled) speech, sometimes but not always
- difficulty walking, with poor balance and jerky steps
- sleepiness, sometimes sleeping for up to 5 hours and unable to be aroused, after which I wake up feeling fine
- normal blood pressure to start, then high blood pressure and fast heart rate
- sometimes have GERD or bowel dump
Since speaking to you in 2017, I have been diagnosed with Systemic Lupus Erythematosis (dsDNA Ab EIA 305, Antinulear Ab Titer 1:80), CNS Vasculitis (IR Angiogram Cerebral), Sjogrens Disease (SSA Ab 55), Hypercoagulable State (cardiolipin IgM 17,9, Sedimentation Rate 39, Firinogen 434), and Autoimmune Hepatitis (Smooth Muscle AB Titer 1:40).
Which of these diagnoses could be causing my problems? Should I go ahead with Cytoxan Infusions (for Lupus) and Xarelto (for hypercoagulable state)?
Brief Answer:
I find no support for Xarelto & believe CYTOXAN is AGGRESSIVE at present
Detailed Answer:
Many thanks for your question. I wish I could read the response I provided to you in 2017. However, as an aid I've read all the archived responses from various colleagues through Dec. 2018.
Several comments about the laboratory data in order to set the stage to answer your questions:
1. The ANA titer of 1:80 is considered ADEQUATE to confer approximately 75% certainty to the diagnosis of SLE. The presence of double stranded DNA adds one of the more common other laboratory tests found in Lupus patients.
2. I am unclear on your information with respect to the CNS vasculitis. Is your abbreviation "IR angiography" telling me that a 2 vessel or 4 vessel CATHETER ANGIOGRAM was performed by an INTERVENTIONAL RADIOLOGIST (IR)? Or are you saying that an MR angiography was performed and read as being consistent with CNS vasculitis but you simply committed a typo by writing "IR" instead of 'MR'?
In any case whether the diagnosis was made using catheter angiography or by MRA technology the specificity of the diagnosis is high enough so that most clinicians will treat patients for the condition before stepping to confirmation by brain biopsy....so there is room to make the diagnosis of CNS vasculitis with some degree of confidence under these circumstances no matter which method were utilized.
3. The presence or absence of cardiolipin or other markers that indicate a level of inflammation is not of prime interest in your case if the question of hypercoagulability is being asked. Patients with a secure diagnosis of either SLE or CNS vasculitis TOGETHER begs the question of a diagnostic entity termed LUPUS CEREBRITIS. This diagnosis (in my opinion) ties your other symptoms together including your history of 50 TIAS much more elegantly than to give 2 SEPARATE diagnoses of SLE and CNS VASCULITIS.
Also, patients with either Lupus or vasculitis...or perhaps even LUPUS CEREBRITIS if your doctors would consider that as a potential differential BY DEFAULT confers a higher than average risk of HYPERCOAGULABILITY so that other markers of hypercoagulability are not really necessary to consider in your case. In other words, it makes sense to order the labs since sometimes everything turns out negative but their presence doesn't XXXXXXX us nor does it change management in any appreciable way.
4. Your ESR of 39 is not outrageously high but it is high nevertheless. I may have also obtained a C-reactive protein (CRP) on you just to compare with the ESR and to also give us a 2nd reliable inflammatory marker to follow DOWNWARD as treatment is given so we can be as certain as possible that the condition is in remission and not active.
Answering your questions now:
a. "Which of these diagnoses could be causing my problems?"
ANSWER: The only DIAGNOSES that I would consider as germane to your symptoms as presented would be the SLE (or even Lupus Cerebritis) and Sjogren's Syndrome. I do not place the diagnosis of autoimmune hepatitis as being exceedingly high or in front of the other 2 for the purpose of causing the majority of CNS symptoms at large. However, make no mistake- if your liver is not properly functioning then, it can certainly be a CONTRIBUTOR to some of your symptoms. And it can also be responsible in some degree to causing hypercoagulability.
A more likely CAUSE of your symptoms as you've described them would be that ALL of the items in question (SLE, VASCULITIS, SJOGREN's, AUTOIMMUNE HEPATITIS) are likely playing a role in what's going on and should be addressed to the extent possible.
I believe that using CYTOXAN infusions is a reasonable choice of treatment modalities that can in and of itself be good for not just the lupus but for vasculitis and even possibly the hepatitis (though I'm not an expert in the considerations of hepatic diseases of autoimmune origin). However, in my opinion, PRIOR to using powerful infusions my inclination would be to start my patient on less aggressive medications such as PLAQUENIL and/or METHOTREXATE and perhaps add a steroid such as DELTASONE or PREDNISONE while gauging response BEFORE going to infusions.
I would not use Xarelto or even antiplatelet agents to treat the hypercoagulability problem since Xarelto (or any anticoagulant) has never been shown to significantly contribute to the treatment of such inflammatory etiologies nor can they decrease the risks for TIA's strokes, or heart attacks. Anticoagulants given in these settings will only serve to increase the risk for bleeding complications. The inflammatory disease is what needs to be treated not the resulting hematological aberrations or blood dyscrasias.
Treat the underlying cause (SLE, VASCULITIS, SJOGREN's) and improvement in the blood coagulability parameters will follow.
And so young lady, If I've provided useful and helpful information to your question could you do me the HUGE favor of CLOSING THE QUERY along with some POSITIVE words of feedback and maybe even a 5 STAR rating?
This query has utilized a total of 105 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
I find no support for Xarelto & believe CYTOXAN is AGGRESSIVE at present
Detailed Answer:
Many thanks for your question. I wish I could read the response I provided to you in 2017. However, as an aid I've read all the archived responses from various colleagues through Dec. 2018.
Several comments about the laboratory data in order to set the stage to answer your questions:
1. The ANA titer of 1:80 is considered ADEQUATE to confer approximately 75% certainty to the diagnosis of SLE. The presence of double stranded DNA adds one of the more common other laboratory tests found in Lupus patients.
2. I am unclear on your information with respect to the CNS vasculitis. Is your abbreviation "IR angiography" telling me that a 2 vessel or 4 vessel CATHETER ANGIOGRAM was performed by an INTERVENTIONAL RADIOLOGIST (IR)? Or are you saying that an MR angiography was performed and read as being consistent with CNS vasculitis but you simply committed a typo by writing "IR" instead of 'MR'?
In any case whether the diagnosis was made using catheter angiography or by MRA technology the specificity of the diagnosis is high enough so that most clinicians will treat patients for the condition before stepping to confirmation by brain biopsy....so there is room to make the diagnosis of CNS vasculitis with some degree of confidence under these circumstances no matter which method were utilized.
3. The presence or absence of cardiolipin or other markers that indicate a level of inflammation is not of prime interest in your case if the question of hypercoagulability is being asked. Patients with a secure diagnosis of either SLE or CNS vasculitis TOGETHER begs the question of a diagnostic entity termed LUPUS CEREBRITIS. This diagnosis (in my opinion) ties your other symptoms together including your history of 50 TIAS much more elegantly than to give 2 SEPARATE diagnoses of SLE and CNS VASCULITIS.
Also, patients with either Lupus or vasculitis...or perhaps even LUPUS CEREBRITIS if your doctors would consider that as a potential differential BY DEFAULT confers a higher than average risk of HYPERCOAGULABILITY so that other markers of hypercoagulability are not really necessary to consider in your case. In other words, it makes sense to order the labs since sometimes everything turns out negative but their presence doesn't XXXXXXX us nor does it change management in any appreciable way.
4. Your ESR of 39 is not outrageously high but it is high nevertheless. I may have also obtained a C-reactive protein (CRP) on you just to compare with the ESR and to also give us a 2nd reliable inflammatory marker to follow DOWNWARD as treatment is given so we can be as certain as possible that the condition is in remission and not active.
Answering your questions now:
a. "Which of these diagnoses could be causing my problems?"
ANSWER: The only DIAGNOSES that I would consider as germane to your symptoms as presented would be the SLE (or even Lupus Cerebritis) and Sjogren's Syndrome. I do not place the diagnosis of autoimmune hepatitis as being exceedingly high or in front of the other 2 for the purpose of causing the majority of CNS symptoms at large. However, make no mistake- if your liver is not properly functioning then, it can certainly be a CONTRIBUTOR to some of your symptoms. And it can also be responsible in some degree to causing hypercoagulability.
A more likely CAUSE of your symptoms as you've described them would be that ALL of the items in question (SLE, VASCULITIS, SJOGREN's, AUTOIMMUNE HEPATITIS) are likely playing a role in what's going on and should be addressed to the extent possible.
I believe that using CYTOXAN infusions is a reasonable choice of treatment modalities that can in and of itself be good for not just the lupus but for vasculitis and even possibly the hepatitis (though I'm not an expert in the considerations of hepatic diseases of autoimmune origin). However, in my opinion, PRIOR to using powerful infusions my inclination would be to start my patient on less aggressive medications such as PLAQUENIL and/or METHOTREXATE and perhaps add a steroid such as DELTASONE or PREDNISONE while gauging response BEFORE going to infusions.
I would not use Xarelto or even antiplatelet agents to treat the hypercoagulability problem since Xarelto (or any anticoagulant) has never been shown to significantly contribute to the treatment of such inflammatory etiologies nor can they decrease the risks for TIA's strokes, or heart attacks. Anticoagulants given in these settings will only serve to increase the risk for bleeding complications. The inflammatory disease is what needs to be treated not the resulting hematological aberrations or blood dyscrasias.
Treat the underlying cause (SLE, VASCULITIS, SJOGREN's) and improvement in the blood coagulability parameters will follow.
And so young lady, If I've provided useful and helpful information to your question could you do me the HUGE favor of CLOSING THE QUERY along with some POSITIVE words of feedback and maybe even a 5 STAR rating?
This query has utilized a total of 105 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
I find no support for Xarelto & believe CYTOXAN is AGGRESSIVE at present
Detailed Answer:
Many thanks for your question. I wish I could read the response I provided to you in 2017. However, as an aid I've read all the archived responses from various colleagues through Dec. 2018.
Several comments about the laboratory data in order to set the stage to answer your questions:
1. The ANA titer of 1:80 is considered ADEQUATE to confer approximately 75% certainty to the diagnosis of SLE. The presence of double stranded DNA adds one of the more common other laboratory tests found in Lupus patients.
2. I am unclear on your information with respect to the CNS vasculitis. Is your abbreviation "IR angiography" telling me that a 2 vessel or 4 vessel CATHETER ANGIOGRAM was performed by an INTERVENTIONAL RADIOLOGIST (IR)? Or are you saying that an MR angiography was performed and read as being consistent with CNS vasculitis but you simply committed a typo by writing "IR" instead of 'MR'?
In any case whether the diagnosis was made using catheter angiography or by MRA technology the specificity of the diagnosis is high enough so that most clinicians will treat patients for the condition before stepping to confirmation by brain biopsy....so there is room to make the diagnosis of CNS vasculitis with some degree of confidence under these circumstances no matter which method were utilized.
3. The presence or absence of cardiolipin or other markers that indicate a level of inflammation is not of prime interest in your case if the question of hypercoagulability is being asked. Patients with a secure diagnosis of either SLE or CNS vasculitis TOGETHER begs the question of a diagnostic entity termed LUPUS CEREBRITIS. This diagnosis (in my opinion) ties your other symptoms together including your history of 50 TIAS much more elegantly than to give 2 SEPARATE diagnoses of SLE and CNS VASCULITIS.
Also, patients with either Lupus or vasculitis...or perhaps even LUPUS CEREBRITIS if your doctors would consider that as a potential differential BY DEFAULT confers a higher than average risk of HYPERCOAGULABILITY so that other markers of hypercoagulability are not really necessary to consider in your case. In other words, it makes sense to order the labs since sometimes everything turns out negative but their presence doesn't XXXXXXX us nor does it change management in any appreciable way.
4. Your ESR of 39 is not outrageously high but it is high nevertheless. I may have also obtained a C-reactive protein (CRP) on you just to compare with the ESR and to also give us a 2nd reliable inflammatory marker to follow DOWNWARD as treatment is given so we can be as certain as possible that the condition is in remission and not active.
Answering your questions now:
a. "Which of these diagnoses could be causing my problems?"
ANSWER: The only DIAGNOSES that I would consider as germane to your symptoms as presented would be the SLE (or even Lupus Cerebritis) and Sjogren's Syndrome. I do not place the diagnosis of autoimmune hepatitis as being exceedingly high or in front of the other 2 for the purpose of causing the majority of CNS symptoms at large. However, make no mistake- if your liver is not properly functioning then, it can certainly be a CONTRIBUTOR to some of your symptoms. And it can also be responsible in some degree to causing hypercoagulability.
A more likely CAUSE of your symptoms as you've described them would be that ALL of the items in question (SLE, VASCULITIS, SJOGREN's, AUTOIMMUNE HEPATITIS) are likely playing a role in what's going on and should be addressed to the extent possible.
I believe that using CYTOXAN infusions is a reasonable choice of treatment modalities that can in and of itself be good for not just the lupus but for vasculitis and even possibly the hepatitis (though I'm not an expert in the considerations of hepatic diseases of autoimmune origin). However, in my opinion, PRIOR to using powerful infusions my inclination would be to start my patient on less aggressive medications such as PLAQUENIL and/or METHOTREXATE and perhaps add a steroid such as DELTASONE or PREDNISONE while gauging response BEFORE going to infusions.
I would not use Xarelto or even antiplatelet agents to treat the hypercoagulability problem since Xarelto (or any anticoagulant) has never been shown to significantly contribute to the treatment of such inflammatory etiologies nor can they decrease the risks for TIA's strokes, or heart attacks. Anticoagulants given in these settings will only serve to increase the risk for bleeding complications. The inflammatory disease is what needs to be treated not the resulting hematological aberrations or blood dyscrasias.
Treat the underlying cause (SLE, VASCULITIS, SJOGREN's) and improvement in the blood coagulability parameters will follow.
And so young lady, If I've provided useful and helpful information to your question could you do me the HUGE favor of CLOSING THE QUERY along with some POSITIVE words of feedback and maybe even a 5 STAR rating?
This query has utilized a total of 105 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
I find no support for Xarelto & believe CYTOXAN is AGGRESSIVE at present
Detailed Answer:
Many thanks for your question. I wish I could read the response I provided to you in 2017. However, as an aid I've read all the archived responses from various colleagues through Dec. 2018.
Several comments about the laboratory data in order to set the stage to answer your questions:
1. The ANA titer of 1:80 is considered ADEQUATE to confer approximately 75% certainty to the diagnosis of SLE. The presence of double stranded DNA adds one of the more common other laboratory tests found in Lupus patients.
2. I am unclear on your information with respect to the CNS vasculitis. Is your abbreviation "IR angiography" telling me that a 2 vessel or 4 vessel CATHETER ANGIOGRAM was performed by an INTERVENTIONAL RADIOLOGIST (IR)? Or are you saying that an MR angiography was performed and read as being consistent with CNS vasculitis but you simply committed a typo by writing "IR" instead of 'MR'?
In any case whether the diagnosis was made using catheter angiography or by MRA technology the specificity of the diagnosis is high enough so that most clinicians will treat patients for the condition before stepping to confirmation by brain biopsy....so there is room to make the diagnosis of CNS vasculitis with some degree of confidence under these circumstances no matter which method were utilized.
3. The presence or absence of cardiolipin or other markers that indicate a level of inflammation is not of prime interest in your case if the question of hypercoagulability is being asked. Patients with a secure diagnosis of either SLE or CNS vasculitis TOGETHER begs the question of a diagnostic entity termed LUPUS CEREBRITIS. This diagnosis (in my opinion) ties your other symptoms together including your history of 50 TIAS much more elegantly than to give 2 SEPARATE diagnoses of SLE and CNS VASCULITIS.
Also, patients with either Lupus or vasculitis...or perhaps even LUPUS CEREBRITIS if your doctors would consider that as a potential differential BY DEFAULT confers a higher than average risk of HYPERCOAGULABILITY so that other markers of hypercoagulability are not really necessary to consider in your case. In other words, it makes sense to order the labs since sometimes everything turns out negative but their presence doesn't XXXXXXX us nor does it change management in any appreciable way.
4. Your ESR of 39 is not outrageously high but it is high nevertheless. I may have also obtained a C-reactive protein (CRP) on you just to compare with the ESR and to also give us a 2nd reliable inflammatory marker to follow DOWNWARD as treatment is given so we can be as certain as possible that the condition is in remission and not active.
Answering your questions now:
a. "Which of these diagnoses could be causing my problems?"
ANSWER: The only DIAGNOSES that I would consider as germane to your symptoms as presented would be the SLE (or even Lupus Cerebritis) and Sjogren's Syndrome. I do not place the diagnosis of autoimmune hepatitis as being exceedingly high or in front of the other 2 for the purpose of causing the majority of CNS symptoms at large. However, make no mistake- if your liver is not properly functioning then, it can certainly be a CONTRIBUTOR to some of your symptoms. And it can also be responsible in some degree to causing hypercoagulability.
A more likely CAUSE of your symptoms as you've described them would be that ALL of the items in question (SLE, VASCULITIS, SJOGREN's, AUTOIMMUNE HEPATITIS) are likely playing a role in what's going on and should be addressed to the extent possible.
I believe that using CYTOXAN infusions is a reasonable choice of treatment modalities that can in and of itself be good for not just the lupus but for vasculitis and even possibly the hepatitis (though I'm not an expert in the considerations of hepatic diseases of autoimmune origin). However, in my opinion, PRIOR to using powerful infusions my inclination would be to start my patient on less aggressive medications such as PLAQUENIL and/or METHOTREXATE and perhaps add a steroid such as DELTASONE or PREDNISONE while gauging response BEFORE going to infusions.
I would not use Xarelto or even antiplatelet agents to treat the hypercoagulability problem since Xarelto (or any anticoagulant) has never been shown to significantly contribute to the treatment of such inflammatory etiologies nor can they decrease the risks for TIA's strokes, or heart attacks. Anticoagulants given in these settings will only serve to increase the risk for bleeding complications. The inflammatory disease is what needs to be treated not the resulting hematological aberrations or blood dyscrasias.
Treat the underlying cause (SLE, VASCULITIS, SJOGREN's) and improvement in the blood coagulability parameters will follow.
And so young lady, If I've provided useful and helpful information to your question could you do me the HUGE favor of CLOSING THE QUERY along with some POSITIVE words of feedback and maybe even a 5 STAR rating?
This query has utilized a total of 105 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you very much. I will not take Xarelto or cytoxan. I will ask for the less aggressive medicines. The angiogram was a catheter one done by an interventional radiologist. He was so concerned that he immediately called my neurologist who was vacationing in Europe at the time.
Thank you very much. I will not take Xarelto or cytoxan. I will ask for the less aggressive medicines. The angiogram was a catheter one done by an interventional radiologist. He was so concerned that he immediately called my neurologist who was vacationing in Europe at the time.
I wish you the best. Please respond so that I can give you five stars.
I wish you the best. Please respond so that I can give you five stars.
Brief Answer:
Many thanks for your kind comments and feedback
Detailed Answer:
Thank you for sending me that updated information young lady.
I actually was able to travel back to March 2017 to look for the consult you said I had done for you on vasovagal symptoms and TIA's but was unable to locate the right consult report. I would've enjoyed REREADING that consult just to bring things into a nice 2 year alignment with respect to any symptoms you were mentioning as well as what my impressions and thoughts were at that time with respect to any explanations, recommendations for testing and/or management. Alas, not able to really put my finger on the consult. I simply like to go back and review the evolution of histories as well as seeing how treatments and managements have updated through time. Of course, you could always visit me in my office in XXXXXXX OH and I can have the pleasure and advantage of meeting you, getting the full magilla from you top to bottom, and being able to actually examine you to get a really solid idea as to what's going on.
However, if I simply go on the strict basis of what you've told me along with the lab results presented then, I would have to go with the diagnoses of SLE/CEREBRAL VASCULITIS, AND SJOGREN's.
And just to clarify so there's no misunderstanding. I'm NOT recommending the infusion therapy because I'm making an assumption that you've not really been treated for any of these 3 problems using more conventional NON-INFUSIONAL forms of care and secondly, I typically do not reach for infusions in my patients unless there is a rapid deterioration going on over a short period of time which is unexpected or inexplicable DESPITE BEST medical therapy, and third I always ask that my patients be fully educated on infusion therapies in terms of expected BENEFITS vs. POTENTIAL SIDE EFFECTS.
In the case of NOT recommending Xarelto I am telling you this because the use of anticoagulants in CNS disease (especially) is not indicated and not supported by any research at this time EXCEPT for the very specific and narrow case of CARDIAC SOURCES of emboli that break off and cause TIA's or STROKES or if the patient is at HIGH RISK for cardiac emboli forming and traveling to the brain. High Risk for cardiac emboli has been narrowly defined as conditions of ARRHYTHMIA such as:
1. ATRIAL FIBRILLATION which is either PAROXYSMAL or CHRONIC and cannot be reverted to sinus by either chemical or electroshock means. Also, other rhythms of the heart considered to be IRREGULAR in nature which risks embolic formation
2. Significant cardiac wall motion abnormalities as are seen in patients who have suffered myocardial infarcts
3. Significantly enlarged chambers of the heart (VENTRICULOMEGALY) which serve as a pool where blood stagnates and forms clots
4. Certain Heart valve defects which are caused by previous infections or congenital deformities can also lead to the formation of blood clots that then, attach to the walls of the heart and can be ejected at any moment to the brain
5. Also, a very low EJECTION fraction of blood from the heart is a risk factor for clot formation since blood at that point is stagnant in the heart muscle and not getting out due to the reduced pumping action which means that blood which is left over in the heart can have time to form blood clots which can be ejected at any time.
And there are a number of other cardiac causes that can lead to embolic formation.
These are the ONLY criteria we apply in making a decision whether or not a patient's benefits outweigh risks by giving them ANTICOAGULANTS (Xarelto being one of those types of drugs). By the way, the above criteria when correctly applied to preventing strokes should result in a choice being made of ANTICOAGULANT medication....NOT ANTIPLATELET or ANTIAGGREGANT medication. Also, there is no evidence that COMBINING anticoagulants and antiplatelets is any more effective in preventing strokes for the above classified individuals compared to just anticoagulants alone. All that happens is that bleeding risks are multiplied enormously...and more so if patients are in the elder category.
Not at all that you are in that category my young lady....however, some who are farther along the ladder of life in years may actually increase their risk of bleeding complications just by being older and having less ability NOT to bleed...if that makes sense.
And so, the bottom line on HYPERCOAGULABLE states is that they are caused from anything such as dehydration to infectious diseases to METABOLIC CONDITIONS, to SMOKING, to genetic defects that cause abnormal productions of certain blood factors such as Factor V Leiden, or autoimmune diseases such as SLE, VASCULITIS, CEREBRITIS, or SJOGREN's SYNDROME, and NONE of these conditions or consequences are successfully treated, prevented, or even mitigated to any significant amount by using anticoagulants. Again, studies are pretty clear that the only that happens is that increased risks for bleeding occur and the patient is no more protected against the next TIA or STROKE than before taking the drug. Therefore, it is simply not used when applying current standards of care.
I am going to include 3 very interesting links on LUPUS TREATMENT AND MANAGEMENT, INFUSION THERAPY AND LUPUS, and CARDIOEMBOLIC CAUSES OF STROKE which I'd like you to read and then, ask questions about. I'd like you to be armed with information on the risks and benefits of the proposed CYTOXAN since I believe first intention for treating autoimmune problems should be using the most effective drugs possible with the least aggressive or morbid consequences. And I believe that would describe more the drugs such as PLAQUENIL, STEROIDS, and METHOTREXATE. If these are found to be ineffective or intolerable to the patient then, I believe there is better justification to go to the immunomodulatory drugs that can suppress immune systems (which in your case isn't a great idea at this point since you are coming off of a recent serious bout of Legionnaire's Disease), result in some cases in the activation of cancers, and cause serious other problems which sometimes don't reverse such as hair loss, severe nausea/vomiting, or bleeding through the bladder causing what is termed a HEMORRHAGIC CYSTITIS.
And that's not to say at all that PLAQUENIL, METHOTREXATE, OR STEROIDS are benign because that is far from the truth but in most cases when patients are started on these drugs it is usually to catch the very beginnings of side effects that start out being rather mild and can be easily dealt with instead of FULMINANT from the get go which is what an infusion setup is likely to do.
Here are the links I'd like you to look at and read. They are written in a very concise and interesting manner which is sure to get your attention and make you remember them....that's why I liked them so much when I read them:
INFUSION THERAPY AND LUPUS
https://www.hss.edu/conditions_lupus_and_infusion_therapy_what_you_should_know_now.asp
CNS LUPUS TREATMENT AND MANAGEMENT
https://emedicine.medscape.com/article/0000-treatment#d1
CARDIAC CAUSES FOR STROKE
https://jfkmc.org/pdf/njrehab/Feingold%20-%20Cardiac%20Causes%20for%20Stroke-shrunk.pdf
Once again young lady, if I've provided useful and helpful information to your question I would very much appreciate your CLOSING THE QUERY along with some POSITIVE words of feedback and perhaps a 5 STAR rating if deserving?
And I'd be very interested in knowing what your final decisions are in concert with your doctor's input and how your symptoms are going as soon as you get a chance to write to me for this or any other concerns at: www.bit.ly/drdariushsaghafi
Cheers!
This query has utilized a total of 194 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
P.S. It's good to hear that the radiologist took such a proactive approach to contact your doctor vacationing in Europe. Maybe one day I'll have the resources and time to do the same! LOL!
Notwithstanding, the significant diagnosis of a vasculitic process does not necessarily translate into pushing PANIC buttons and overplaying the hand you've been dealt. My impression is that we have time to put you on the standard of care without throwing the kitchen sink at you and see how you progress. I mean, quite honestly, if it's taken them 2 years to get to this point then, I'm not sure I understand the immediate necessity to start peeling rubber at this point? Make sense?. Don't forget to write back.....your case is one that I definitely want to hear about....your results and how things go will help others similarly affected. :)
Many thanks for your kind comments and feedback
Detailed Answer:
Thank you for sending me that updated information young lady.
I actually was able to travel back to March 2017 to look for the consult you said I had done for you on vasovagal symptoms and TIA's but was unable to locate the right consult report. I would've enjoyed REREADING that consult just to bring things into a nice 2 year alignment with respect to any symptoms you were mentioning as well as what my impressions and thoughts were at that time with respect to any explanations, recommendations for testing and/or management. Alas, not able to really put my finger on the consult. I simply like to go back and review the evolution of histories as well as seeing how treatments and managements have updated through time. Of course, you could always visit me in my office in XXXXXXX OH and I can have the pleasure and advantage of meeting you, getting the full magilla from you top to bottom, and being able to actually examine you to get a really solid idea as to what's going on.
However, if I simply go on the strict basis of what you've told me along with the lab results presented then, I would have to go with the diagnoses of SLE/CEREBRAL VASCULITIS, AND SJOGREN's.
And just to clarify so there's no misunderstanding. I'm NOT recommending the infusion therapy because I'm making an assumption that you've not really been treated for any of these 3 problems using more conventional NON-INFUSIONAL forms of care and secondly, I typically do not reach for infusions in my patients unless there is a rapid deterioration going on over a short period of time which is unexpected or inexplicable DESPITE BEST medical therapy, and third I always ask that my patients be fully educated on infusion therapies in terms of expected BENEFITS vs. POTENTIAL SIDE EFFECTS.
In the case of NOT recommending Xarelto I am telling you this because the use of anticoagulants in CNS disease (especially) is not indicated and not supported by any research at this time EXCEPT for the very specific and narrow case of CARDIAC SOURCES of emboli that break off and cause TIA's or STROKES or if the patient is at HIGH RISK for cardiac emboli forming and traveling to the brain. High Risk for cardiac emboli has been narrowly defined as conditions of ARRHYTHMIA such as:
1. ATRIAL FIBRILLATION which is either PAROXYSMAL or CHRONIC and cannot be reverted to sinus by either chemical or electroshock means. Also, other rhythms of the heart considered to be IRREGULAR in nature which risks embolic formation
2. Significant cardiac wall motion abnormalities as are seen in patients who have suffered myocardial infarcts
3. Significantly enlarged chambers of the heart (VENTRICULOMEGALY) which serve as a pool where blood stagnates and forms clots
4. Certain Heart valve defects which are caused by previous infections or congenital deformities can also lead to the formation of blood clots that then, attach to the walls of the heart and can be ejected at any moment to the brain
5. Also, a very low EJECTION fraction of blood from the heart is a risk factor for clot formation since blood at that point is stagnant in the heart muscle and not getting out due to the reduced pumping action which means that blood which is left over in the heart can have time to form blood clots which can be ejected at any time.
And there are a number of other cardiac causes that can lead to embolic formation.
These are the ONLY criteria we apply in making a decision whether or not a patient's benefits outweigh risks by giving them ANTICOAGULANTS (Xarelto being one of those types of drugs). By the way, the above criteria when correctly applied to preventing strokes should result in a choice being made of ANTICOAGULANT medication....NOT ANTIPLATELET or ANTIAGGREGANT medication. Also, there is no evidence that COMBINING anticoagulants and antiplatelets is any more effective in preventing strokes for the above classified individuals compared to just anticoagulants alone. All that happens is that bleeding risks are multiplied enormously...and more so if patients are in the elder category.
Not at all that you are in that category my young lady....however, some who are farther along the ladder of life in years may actually increase their risk of bleeding complications just by being older and having less ability NOT to bleed...if that makes sense.
And so, the bottom line on HYPERCOAGULABLE states is that they are caused from anything such as dehydration to infectious diseases to METABOLIC CONDITIONS, to SMOKING, to genetic defects that cause abnormal productions of certain blood factors such as Factor V Leiden, or autoimmune diseases such as SLE, VASCULITIS, CEREBRITIS, or SJOGREN's SYNDROME, and NONE of these conditions or consequences are successfully treated, prevented, or even mitigated to any significant amount by using anticoagulants. Again, studies are pretty clear that the only that happens is that increased risks for bleeding occur and the patient is no more protected against the next TIA or STROKE than before taking the drug. Therefore, it is simply not used when applying current standards of care.
I am going to include 3 very interesting links on LUPUS TREATMENT AND MANAGEMENT, INFUSION THERAPY AND LUPUS, and CARDIOEMBOLIC CAUSES OF STROKE which I'd like you to read and then, ask questions about. I'd like you to be armed with information on the risks and benefits of the proposed CYTOXAN since I believe first intention for treating autoimmune problems should be using the most effective drugs possible with the least aggressive or morbid consequences. And I believe that would describe more the drugs such as PLAQUENIL, STEROIDS, and METHOTREXATE. If these are found to be ineffective or intolerable to the patient then, I believe there is better justification to go to the immunomodulatory drugs that can suppress immune systems (which in your case isn't a great idea at this point since you are coming off of a recent serious bout of Legionnaire's Disease), result in some cases in the activation of cancers, and cause serious other problems which sometimes don't reverse such as hair loss, severe nausea/vomiting, or bleeding through the bladder causing what is termed a HEMORRHAGIC CYSTITIS.
And that's not to say at all that PLAQUENIL, METHOTREXATE, OR STEROIDS are benign because that is far from the truth but in most cases when patients are started on these drugs it is usually to catch the very beginnings of side effects that start out being rather mild and can be easily dealt with instead of FULMINANT from the get go which is what an infusion setup is likely to do.
Here are the links I'd like you to look at and read. They are written in a very concise and interesting manner which is sure to get your attention and make you remember them....that's why I liked them so much when I read them:
INFUSION THERAPY AND LUPUS
https://www.hss.edu/conditions_lupus_and_infusion_therapy_what_you_should_know_now.asp
CNS LUPUS TREATMENT AND MANAGEMENT
https://emedicine.medscape.com/article/0000-treatment#d1
CARDIAC CAUSES FOR STROKE
https://jfkmc.org/pdf/njrehab/Feingold%20-%20Cardiac%20Causes%20for%20Stroke-shrunk.pdf
Once again young lady, if I've provided useful and helpful information to your question I would very much appreciate your CLOSING THE QUERY along with some POSITIVE words of feedback and perhaps a 5 STAR rating if deserving?
And I'd be very interested in knowing what your final decisions are in concert with your doctor's input and how your symptoms are going as soon as you get a chance to write to me for this or any other concerns at: www.bit.ly/drdariushsaghafi
Cheers!
This query has utilized a total of 194 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
P.S. It's good to hear that the radiologist took such a proactive approach to contact your doctor vacationing in Europe. Maybe one day I'll have the resources and time to do the same! LOL!
Notwithstanding, the significant diagnosis of a vasculitic process does not necessarily translate into pushing PANIC buttons and overplaying the hand you've been dealt. My impression is that we have time to put you on the standard of care without throwing the kitchen sink at you and see how you progress. I mean, quite honestly, if it's taken them 2 years to get to this point then, I'm not sure I understand the immediate necessity to start peeling rubber at this point? Make sense?. Don't forget to write back.....your case is one that I definitely want to hear about....your results and how things go will help others similarly affected. :)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
Many thanks for your kind comments and feedback
Detailed Answer:
Thank you for sending me that updated information young lady.
I actually was able to travel back to March 2017 to look for the consult you said I had done for you on vasovagal symptoms and TIA's but was unable to locate the right consult report. I would've enjoyed REREADING that consult just to bring things into a nice 2 year alignment with respect to any symptoms you were mentioning as well as what my impressions and thoughts were at that time with respect to any explanations, recommendations for testing and/or management. Alas, not able to really put my finger on the consult. I simply like to go back and review the evolution of histories as well as seeing how treatments and managements have updated through time. Of course, you could always visit me in my office in XXXXXXX OH and I can have the pleasure and advantage of meeting you, getting the full magilla from you top to bottom, and being able to actually examine you to get a really solid idea as to what's going on.
However, if I simply go on the strict basis of what you've told me along with the lab results presented then, I would have to go with the diagnoses of SLE/CEREBRAL VASCULITIS, AND SJOGREN's.
And just to clarify so there's no misunderstanding. I'm NOT recommending the infusion therapy because I'm making an assumption that you've not really been treated for any of these 3 problems using more conventional NON-INFUSIONAL forms of care and secondly, I typically do not reach for infusions in my patients unless there is a rapid deterioration going on over a short period of time which is unexpected or inexplicable DESPITE BEST medical therapy, and third I always ask that my patients be fully educated on infusion therapies in terms of expected BENEFITS vs. POTENTIAL SIDE EFFECTS.
In the case of NOT recommending Xarelto I am telling you this because the use of anticoagulants in CNS disease (especially) is not indicated and not supported by any research at this time EXCEPT for the very specific and narrow case of CARDIAC SOURCES of emboli that break off and cause TIA's or STROKES or if the patient is at HIGH RISK for cardiac emboli forming and traveling to the brain. High Risk for cardiac emboli has been narrowly defined as conditions of ARRHYTHMIA such as:
1. ATRIAL FIBRILLATION which is either PAROXYSMAL or CHRONIC and cannot be reverted to sinus by either chemical or electroshock means. Also, other rhythms of the heart considered to be IRREGULAR in nature which risks embolic formation
2. Significant cardiac wall motion abnormalities as are seen in patients who have suffered myocardial infarcts
3. Significantly enlarged chambers of the heart (VENTRICULOMEGALY) which serve as a pool where blood stagnates and forms clots
4. Certain Heart valve defects which are caused by previous infections or congenital deformities can also lead to the formation of blood clots that then, attach to the walls of the heart and can be ejected at any moment to the brain
5. Also, a very low EJECTION fraction of blood from the heart is a risk factor for clot formation since blood at that point is stagnant in the heart muscle and not getting out due to the reduced pumping action which means that blood which is left over in the heart can have time to form blood clots which can be ejected at any time.
And there are a number of other cardiac causes that can lead to embolic formation.
These are the ONLY criteria we apply in making a decision whether or not a patient's benefits outweigh risks by giving them ANTICOAGULANTS (Xarelto being one of those types of drugs). By the way, the above criteria when correctly applied to preventing strokes should result in a choice being made of ANTICOAGULANT medication....NOT ANTIPLATELET or ANTIAGGREGANT medication. Also, there is no evidence that COMBINING anticoagulants and antiplatelets is any more effective in preventing strokes for the above classified individuals compared to just anticoagulants alone. All that happens is that bleeding risks are multiplied enormously...and more so if patients are in the elder category.
Not at all that you are in that category my young lady....however, some who are farther along the ladder of life in years may actually increase their risk of bleeding complications just by being older and having less ability NOT to bleed...if that makes sense.
And so, the bottom line on HYPERCOAGULABLE states is that they are caused from anything such as dehydration to infectious diseases to METABOLIC CONDITIONS, to SMOKING, to genetic defects that cause abnormal productions of certain blood factors such as Factor V Leiden, or autoimmune diseases such as SLE, VASCULITIS, CEREBRITIS, or SJOGREN's SYNDROME, and NONE of these conditions or consequences are successfully treated, prevented, or even mitigated to any significant amount by using anticoagulants. Again, studies are pretty clear that the only that happens is that increased risks for bleeding occur and the patient is no more protected against the next TIA or STROKE than before taking the drug. Therefore, it is simply not used when applying current standards of care.
I am going to include 3 very interesting links on LUPUS TREATMENT AND MANAGEMENT, INFUSION THERAPY AND LUPUS, and CARDIOEMBOLIC CAUSES OF STROKE which I'd like you to read and then, ask questions about. I'd like you to be armed with information on the risks and benefits of the proposed CYTOXAN since I believe first intention for treating autoimmune problems should be using the most effective drugs possible with the least aggressive or morbid consequences. And I believe that would describe more the drugs such as PLAQUENIL, STEROIDS, and METHOTREXATE. If these are found to be ineffective or intolerable to the patient then, I believe there is better justification to go to the immunomodulatory drugs that can suppress immune systems (which in your case isn't a great idea at this point since you are coming off of a recent serious bout of Legionnaire's Disease), result in some cases in the activation of cancers, and cause serious other problems which sometimes don't reverse such as hair loss, severe nausea/vomiting, or bleeding through the bladder causing what is termed a HEMORRHAGIC CYSTITIS.
And that's not to say at all that PLAQUENIL, METHOTREXATE, OR STEROIDS are benign because that is far from the truth but in most cases when patients are started on these drugs it is usually to catch the very beginnings of side effects that start out being rather mild and can be easily dealt with instead of FULMINANT from the get go which is what an infusion setup is likely to do.
Here are the links I'd like you to look at and read. They are written in a very concise and interesting manner which is sure to get your attention and make you remember them....that's why I liked them so much when I read them:
INFUSION THERAPY AND LUPUS
https://www.hss.edu/conditions_lupus_and_infusion_therapy_what_you_should_know_now.asp
CNS LUPUS TREATMENT AND MANAGEMENT
https://emedicine.medscape.com/article/0000-treatment#d1
CARDIAC CAUSES FOR STROKE
https://jfkmc.org/pdf/njrehab/Feingold%20-%20Cardiac%20Causes%20for%20Stroke-shrunk.pdf
Once again young lady, if I've provided useful and helpful information to your question I would very much appreciate your CLOSING THE QUERY along with some POSITIVE words of feedback and perhaps a 5 STAR rating if deserving?
And I'd be very interested in knowing what your final decisions are in concert with your doctor's input and how your symptoms are going as soon as you get a chance to write to me for this or any other concerns at: www.bit.ly/drdariushsaghafi
Cheers!
This query has utilized a total of 194 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
P.S. It's good to hear that the radiologist took such a proactive approach to contact your doctor vacationing in Europe. Maybe one day I'll have the resources and time to do the same! LOL!
Notwithstanding, the significant diagnosis of a vasculitic process does not necessarily translate into pushing PANIC buttons and overplaying the hand you've been dealt. My impression is that we have time to put you on the standard of care without throwing the kitchen sink at you and see how you progress. I mean, quite honestly, if it's taken them 2 years to get to this point then, I'm not sure I understand the immediate necessity to start peeling rubber at this point? Make sense?. Don't forget to write back.....your case is one that I definitely want to hear about....your results and how things go will help others similarly affected. :)
Many thanks for your kind comments and feedback
Detailed Answer:
Thank you for sending me that updated information young lady.
I actually was able to travel back to March 2017 to look for the consult you said I had done for you on vasovagal symptoms and TIA's but was unable to locate the right consult report. I would've enjoyed REREADING that consult just to bring things into a nice 2 year alignment with respect to any symptoms you were mentioning as well as what my impressions and thoughts were at that time with respect to any explanations, recommendations for testing and/or management. Alas, not able to really put my finger on the consult. I simply like to go back and review the evolution of histories as well as seeing how treatments and managements have updated through time. Of course, you could always visit me in my office in XXXXXXX OH and I can have the pleasure and advantage of meeting you, getting the full magilla from you top to bottom, and being able to actually examine you to get a really solid idea as to what's going on.
However, if I simply go on the strict basis of what you've told me along with the lab results presented then, I would have to go with the diagnoses of SLE/CEREBRAL VASCULITIS, AND SJOGREN's.
And just to clarify so there's no misunderstanding. I'm NOT recommending the infusion therapy because I'm making an assumption that you've not really been treated for any of these 3 problems using more conventional NON-INFUSIONAL forms of care and secondly, I typically do not reach for infusions in my patients unless there is a rapid deterioration going on over a short period of time which is unexpected or inexplicable DESPITE BEST medical therapy, and third I always ask that my patients be fully educated on infusion therapies in terms of expected BENEFITS vs. POTENTIAL SIDE EFFECTS.
In the case of NOT recommending Xarelto I am telling you this because the use of anticoagulants in CNS disease (especially) is not indicated and not supported by any research at this time EXCEPT for the very specific and narrow case of CARDIAC SOURCES of emboli that break off and cause TIA's or STROKES or if the patient is at HIGH RISK for cardiac emboli forming and traveling to the brain. High Risk for cardiac emboli has been narrowly defined as conditions of ARRHYTHMIA such as:
1. ATRIAL FIBRILLATION which is either PAROXYSMAL or CHRONIC and cannot be reverted to sinus by either chemical or electroshock means. Also, other rhythms of the heart considered to be IRREGULAR in nature which risks embolic formation
2. Significant cardiac wall motion abnormalities as are seen in patients who have suffered myocardial infarcts
3. Significantly enlarged chambers of the heart (VENTRICULOMEGALY) which serve as a pool where blood stagnates and forms clots
4. Certain Heart valve defects which are caused by previous infections or congenital deformities can also lead to the formation of blood clots that then, attach to the walls of the heart and can be ejected at any moment to the brain
5. Also, a very low EJECTION fraction of blood from the heart is a risk factor for clot formation since blood at that point is stagnant in the heart muscle and not getting out due to the reduced pumping action which means that blood which is left over in the heart can have time to form blood clots which can be ejected at any time.
And there are a number of other cardiac causes that can lead to embolic formation.
These are the ONLY criteria we apply in making a decision whether or not a patient's benefits outweigh risks by giving them ANTICOAGULANTS (Xarelto being one of those types of drugs). By the way, the above criteria when correctly applied to preventing strokes should result in a choice being made of ANTICOAGULANT medication....NOT ANTIPLATELET or ANTIAGGREGANT medication. Also, there is no evidence that COMBINING anticoagulants and antiplatelets is any more effective in preventing strokes for the above classified individuals compared to just anticoagulants alone. All that happens is that bleeding risks are multiplied enormously...and more so if patients are in the elder category.
Not at all that you are in that category my young lady....however, some who are farther along the ladder of life in years may actually increase their risk of bleeding complications just by being older and having less ability NOT to bleed...if that makes sense.
And so, the bottom line on HYPERCOAGULABLE states is that they are caused from anything such as dehydration to infectious diseases to METABOLIC CONDITIONS, to SMOKING, to genetic defects that cause abnormal productions of certain blood factors such as Factor V Leiden, or autoimmune diseases such as SLE, VASCULITIS, CEREBRITIS, or SJOGREN's SYNDROME, and NONE of these conditions or consequences are successfully treated, prevented, or even mitigated to any significant amount by using anticoagulants. Again, studies are pretty clear that the only that happens is that increased risks for bleeding occur and the patient is no more protected against the next TIA or STROKE than before taking the drug. Therefore, it is simply not used when applying current standards of care.
I am going to include 3 very interesting links on LUPUS TREATMENT AND MANAGEMENT, INFUSION THERAPY AND LUPUS, and CARDIOEMBOLIC CAUSES OF STROKE which I'd like you to read and then, ask questions about. I'd like you to be armed with information on the risks and benefits of the proposed CYTOXAN since I believe first intention for treating autoimmune problems should be using the most effective drugs possible with the least aggressive or morbid consequences. And I believe that would describe more the drugs such as PLAQUENIL, STEROIDS, and METHOTREXATE. If these are found to be ineffective or intolerable to the patient then, I believe there is better justification to go to the immunomodulatory drugs that can suppress immune systems (which in your case isn't a great idea at this point since you are coming off of a recent serious bout of Legionnaire's Disease), result in some cases in the activation of cancers, and cause serious other problems which sometimes don't reverse such as hair loss, severe nausea/vomiting, or bleeding through the bladder causing what is termed a HEMORRHAGIC CYSTITIS.
And that's not to say at all that PLAQUENIL, METHOTREXATE, OR STEROIDS are benign because that is far from the truth but in most cases when patients are started on these drugs it is usually to catch the very beginnings of side effects that start out being rather mild and can be easily dealt with instead of FULMINANT from the get go which is what an infusion setup is likely to do.
Here are the links I'd like you to look at and read. They are written in a very concise and interesting manner which is sure to get your attention and make you remember them....that's why I liked them so much when I read them:
INFUSION THERAPY AND LUPUS
https://www.hss.edu/conditions_lupus_and_infusion_therapy_what_you_should_know_now.asp
CNS LUPUS TREATMENT AND MANAGEMENT
https://emedicine.medscape.com/article/0000-treatment#d1
CARDIAC CAUSES FOR STROKE
https://jfkmc.org/pdf/njrehab/Feingold%20-%20Cardiac%20Causes%20for%20Stroke-shrunk.pdf
Once again young lady, if I've provided useful and helpful information to your question I would very much appreciate your CLOSING THE QUERY along with some POSITIVE words of feedback and perhaps a 5 STAR rating if deserving?
And I'd be very interested in knowing what your final decisions are in concert with your doctor's input and how your symptoms are going as soon as you get a chance to write to me for this or any other concerns at: www.bit.ly/drdariushsaghafi
Cheers!
This query has utilized a total of 194 minutes of professional time in research, review, and synthesis for the purpose of formulating a return response.
P.S. It's good to hear that the radiologist took such a proactive approach to contact your doctor vacationing in Europe. Maybe one day I'll have the resources and time to do the same! LOL!
Notwithstanding, the significant diagnosis of a vasculitic process does not necessarily translate into pushing PANIC buttons and overplaying the hand you've been dealt. My impression is that we have time to put you on the standard of care without throwing the kitchen sink at you and see how you progress. I mean, quite honestly, if it's taken them 2 years to get to this point then, I'm not sure I understand the immediate necessity to start peeling rubber at this point? Make sense?. Don't forget to write back.....your case is one that I definitely want to hear about....your results and how things go will help others similarly affected. :)
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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