Have been on PAS page and Thyroid UK page for a few years but just thought I'd be greedy and join yourselves too.
Have been having increasing levels of pain and discomfort for years but just told lose weight, take brufen. Last few years have been awful , eventually got a referral to Rheumatology. Bloods, scans , US then told we aren't completely sure because your negative for lots of results but there is some inflammation present, which we wouldn't have expected when negative. Felt like they just wanted me to go away but I was not happy with that option. Offered physio, have been down that route 3 or 4 times in the last 2 or 3 years. Offered steroid injections, I declined as have done that several times with only a little temporary relief. So offered Hydroxychloroquine to try and see if it helps till next appointment in a couple of months. If I feel it has helped she would suggest I stay on it or if it doesn't says we could consider a trial of SSZ. Just wondering if this is usual and what peoples experiences are of these meds. Thanks
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Polo22
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It is usual to go through a hierarchy of drugs, so starting on the most common one for your condition, and if that doesn't work moving to the next one.
Everyone is very different, everyone will have a different reaction to the drugs. For instance I have psoriatic arthritis, so even though I have very little psoriasis, they didn't offer me hydroxychloroquine because that can make arthritis worse. I went on SSZ but had a bad reaction to it (asked my son if I had a rash on my legs. "Mum, your whole body is covered in a rash!") then methotrexate which worked for about 6 months then I had a reaction to that too.
And yet there are people here that have been on those drugs for years with only good results.
So best to try them and see what happens, and be prepared for some chopping and changing if they don't work for you.
Yes have regular eye test, last couple of months ago, will watch out for any issues thank you for response, always happy to gain more information from others more experienced 👍
Which will tell you about the various treatments available and the progression through them that we need to endure to show what response is obtained.
Keep good records of how you respond, which joints hurt when and how much (take photos) , and any side effects. Your records will be invaluable as we need to be our own experts on our own condition.
Yeah that is pretty much what happened with me. Seronegative types of inflammatory arthritis do exist so I'm not sure why they'd necessarily expect inflammation to show in your blood.
I took hydroxychloroquine first, which helped, but after a year I went downhill quite rapidly.
Hope it helps bring some relief. It's a well tolerated drug and worth persevering through the initial side effects if you can, as they do pass and the alternatives are harsher.
Hi, I was on hydroxychloroquine for years I'm on a holiday from it at the moment. From my research, this drug is used for loads of disorders and I am sure it worked for me. Following your, wanted me to go away, my sister got that feeling from her Dr they refused to do the blood tests even though my consultant had offered to see any member of my family with symptoms of RA because they now know it runs in families, don't feel alone and give it a try
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