Okay, I have a question, not strictly related to my daughter's main illness (but who knows).
She was given a trial of hydroxychloroquine (HCQ) by the rheumatologist on the basis that her hypertensive-type OCHOS has an autoimmune basis and that HCQ is reasonably low risk among the DMARDs providing you watch out for side effects and have regular eye examinations.
Unexpectedly, the HCQ resolved wrist and hand pain that she had had for about 15 years. This pain was not overwhelming so it was not something she had stressed to doctors over the years considering everything else she has to deal with.
The wrist pain was only felt during weight-bearing activity and the hand pain was felt after exerting her hands (even mild or moderate exertion). Her hands tended to get red, hot and achy. As she has not been working or doing much normal activity, she didn't particularly rate this as a problem.
She then stopped the HCQ because the prescription ran out and it didn't seem to have had any effect on her OCHOS. But the hand and wrist pain is coming back.
And, she is now realising, having had a break from it for about six months, that it was bothering her more than she realised, and it is quite nice to have pain-free hands on the days when you can manage to do a bit of cooking or gardening.
Is it reasonable to ask for the HCQ to be reinstated to see whether the pain resolves again? Or would she have to go down a diagnostic path to work out what exactly is causing the wrist and hand pain?
Previously she had been told that this pain and some other minor arthritis-type things were early-onset osteoarthritis, which is certainly possible, but now we are not sure. As I understand it, the response to HCQ indicates but does not prove autoimmune involvement.
Edit: It has been pointed out that this post could be seen as asking for medical advice. I apologise for that. We have asked the rheumatologist about this matter several times, but by the time I get my daughter to any appointments we are both exhausted, and on getting home we have realised that he never addressed it.
Up until the pain came back, we had decided to shelve autoimmune investigations as being unlikely to yield anything useful. But now I see my daughter crying because her hands are hurting again, and I wonder whether I should Do Something.
I will ask her GP what to do.
The problem is that everyone says "Oh, just have another appointment to discuss it", but as you all know it aint that easy.
