Hi All,
Have not posted for a while, but always read. My main SJS problems were always gastro, but after several gastro drs, procedures, etc., they never really helped, but things seem to clear up after time. Of course, I had eye issues and mouth too. I stopped seeing a rheumy because nothing she ever prescribed helped my issues or I couldn't take the meds due to side effects. So I was just getting by ok on my own.
Well a few weeks ago, out of nowhere, my hips started hurting really bad, then knees followed. A weird pain that went all around my hips into groin and all around knees. I was on a 3rd antibiotic at the time for a sinus infect that would not go away. So I had some prednisone and took some to help get rid of the sinus infection.
Well, low and behold, the pain in the joints totally went away. The sinus infection stayed a total of almost 3 months, ugh. But a week after stopping the pred, back came the pain and now in knees, hips, ankles, shoulders. So bad I could hardly get up and down or walk. We were about to go away, so I went to my pcp and she gave me some more pred. Worked like a charm and trip was great.
But here I am another week done pred and all pains back!! Also my neck hurts and low back! Now they are not joints so I am wondering if it is joint or muscle or nerve??? I don't know. Well I was scheduled for a physical so told my pcp and she gave me a lower dose pred, and the name of a new rheumy to try. I will have to becuase the pain is unbearable and really dibilitating. I can not function. I can't believe this and wonder what it could be. My pcp says she really knows nothing about autoimmue stuff, so is not much help.
Also my insurance changed and is awful. I have to pay for everything, even meds, until I reach a $2500. deductible. So if tests and expensive meds are coming up, it will be hard, but I can't live like this. Why the heck did this have to happen? Next June I will be on Medicare and or couse have to get a supplement, but at least stuff will be covered.
Does anyone else have this? Any ideas what it could be or what could help? I did have blood work that shows positive ANA (as always) and high inflamation, but neg SSA, SSB.
Thanks for any help, Rose G
Forgot to add, I did take plaquenil a couple of years ago, for 7 months. Had to take brand because the generic gave me blurry eyesite within one hour. It was expensive and did not help my stomach issues. As a matter of fact, it gave me very bad diarrhea which I already had issues with (I have bile salt diarrhea since gallbladder removal 32 years ago). But I did not have joint issues, or this pain I have now. I would be willing to take that if it made this go away, maybe look for a different manufacturer for the generic. I may be could take imodium to counteract the diarrhea.
That sounds like me before diagnoses and meds... I still flare once in a while, but much less now. I have Fibro too which causes a lot of muscle pains, but it is really hard to tell what the pain is from. Definitely a good idea to see a new Rheumy. Auto-immune diseases can cause pain, and my Rheumy said that it is really hard to rule out others that like to hang out with SJS. So far my Rheumy can't rule out Lupus or RA for me. Just a wait and see...
Wish you well on your Dr visit!
Thanks Karen13, i just can't imagine what this is. Have never experienced this....such pain. But, I just started taking 10 mgs of pred today and already my neck no longer hurts and shoulders, knees and hips feel a little better....crazy. Hope a new rheumy has some answers and better yet a fix other than pred.
SJS, Lupus or RA can cause terrible pain. So it could be from any one of those three. I hope you find something that works! Be sure you are taking probiotics and watching your diet or the prednisone will give you a terrible case of candida/yeast.