I may be new to this forum but I am grateful to you all already for the amount I have learned from reading your discussions.
I still feel a bit of a fraud with this diagnosis since up until now I have been labelled with fibromyalgia (15 years). It was the rising inflammatory markers and the swollen hands and feet which didn’t quite dovetail.
My new GP wasn’t convinced and tried me on a high steroid dose which much improved my condition. It also gave me type 2 diabetes and GERD even though i am not overweight.
But at least I am now on the right track - I hope. And I am much reassured by what I have read here. I have been on sulfasalazine for 6 months but I don’t think it has helped. Each time I reduce the steroids I am getting a return of symptoms so I expect this will be changed by my rheumy when I see him on Tuesday.
If I am honest I am not sure which I fear the most - the illness or the drugs. But I see this is a recurring theme here. Which means I must have come to the right place. I’m sure we’ll have much to talk about.
Welcome. I’m in the UK too. And I just love you live on a small farm, my idea of heaven frankly.
What dose of sulfasalazine are you on? It didn’t work for me until I was told to take 6 tablets a day. Then it did and then I could reduce the steroids. Sadly for me then it only worked for about 7 months but now I’m on a biologic - Benepali and doing pretty good again. So the meds have certainly helped me and although I love the effect of steroids on me but as you know already it’s causes other problems, which are best not having.
The only drug I truly couldn’t tolerate or get along with was mxt. It was the only drug which gave me side effects that rendered me incapacitated. But for seriously loads of people it doesn’t do that and it certainly helps too. The rest of the drugs I’ve tried and am still on don’t give side effects which affect my daily life at all. So quite honestly be reassured that it’s much better, indeed far better, fearing the disease rather than the drugs. Honestly.
Thanks for your reply. I have never really got on with the sulfasalazine as it made me pretty ill to start with - and I hate trying to swallow the things. I am on 4 a day at present. Like you I got quite a psychological lift from the good effects of the steroids but it has been a bit down hill since then. Its great you have something which is working now. That gives me a bit more hope too
Hallo, yes absolutely steroids are a phase later superseded by other medications, thank goodness. In my case at the moment both mtx and biologics (cosentyx) and its quite good, but it took time for treatments to kick in, think I started medications for the disease as soon as it was diagnosed about a year ago and at the time couldn t walk had to use crutches now a year later am not using them and no longer need heavy painkillers. Treatment is the way to go, even if was reluctant at the time.
That’s great to hear, letizia. I have to confess I have had times already when I have considered doing away with all the medication and taking my chances. But reducing the steroids has caused such a bad reaction each time that I have had to reconsider.
As I remember I asked the rheumatologist to stop the prednisone, but that was only after had started the biologic as well as mtx and had already stopped heavy painkillers, after months of treatment, maybe almost a year? The dose was gradually reduced, and then stopped after quite some time, and initially no prednisone resulted in some pain, but absolutely bearable, and now no longer. Guess Cosentyx had started kicking in by then. But it was me asking to stop the cortisone. (always ask the doctor to stop as many medications as possible, but often am not allowed and must say that result is so good now am reconciled to treatment, especially since so far it has meant not having to recur to knee implants)