hello doctor, I'm 49 years old, female, 2 kids, 18 and 15 years old via sectio,I have very much problems with my health for about 13-14 years now, tired, joint pains, and now diagnosed with ankylosing spondylitis, hemochromatosis and hypo-thyroidie. For hemochromatosis I had 8 times bloodletting within 3,5 months. It wasn't nice, I didn't feel great. Than I started with erytrocytafereses, a double doses in one time, a week later my terrible back pain suffering started. this was early july 2012. in september an Xray showed an inflammation of my right sacra-ilium. the MRI confirmed the inflammation. I was on naxopren 500mg 2 times a day since july 2012 and also 4 times paracetamol 1000mg. HLA b27 pos. two weeks before the backpain started I had a slip-up twice with my right leg. and it did hurt. years ago I had dislocated sacro joints, my physiotherapist did fix that each time. this time when the hurting started I couldn't lift up my leg, couldn't lay down or sit. My osteopath did help me en located the joint and some thoracle vertebras. but the pain remained. My reumatologist gave me Arcoxia but I did feel much sicker with these medicine, back on naxopren and than she gave me fenylbutazon, but that was even harder than the arcoxia. so in january I was allowed to start with Simponi, 1 doses each month. because of the monthly afereses I have to take the Simponi right after that. the combination is very hard. I also get paronychia on both hands, it hurts very much, my nails do come of, headache, nauseous, I had a terrifying heartstop at night and also spontaneous tinnitus after the second injection. I really don't want to take this medicine again, in those two months the pain still stayed the same. So, as for what they say about Bechterew, keep on moving, don't lay down, is not for me, each and every step is so hurtful and when I lay down the pain is reducing. and my back is less hurting. I don't wake up at night from pain. Since the bloodletting I do have a good night rest (I didn't have a good sleep since about 13 years), but unfortunately still tired through the day. 4 weeks ago I decided to take out the Mirena device, (this was my third, so I have had Mirena devices for 14 years now) I feel like another woman. I have more endurance, sometimes less tired, my skin is better, but the pain is still here. But my back is more flexible, i can reach the floor and i can walk straight up, so I do think this is great. My theory is that the Mirena causes a sterile inflammation in the uterus and this can get my immuunsystem on the run. but now I ask you, can you think with me? what can i do now. Next week I have to go to my reumatologist. I wish there was someone who has the brains for the 3 illnesses together. so what is the best treatment for me, thinking of the combinations of the illnesses. Is there a specialist who has the knowlegde of those 3 illnesses.
I hope to hear from you. thank you in advance. Dorine