It seems like sulfalasalazine does want to do something positive. That or my two year flare has gotten tired. I’m thinking it’s the former.
Since June I worked up to the normal dose of 4 tablets a day and just nothing much changed, although I did develop two fractures in my pelvis just to make it a really good summer - not. However I took a really short 8 day course of steroids in mid September for my holiday in the Lake Disctrict and realised then what a few days of being properly able was like.
So around early October, I had a moan to the rheumy’s nurse line. Especially after finding out my bone density scan was virtually normal for someone of my age. And I was persuaded to go up to 6 tablets a day, so I did. And hey presto I am certainly starting to feel far better. Elbows still annoy me but really capacity levels are significantly increased.
I’m lucky too as I simply have no side effects on it either. But on Sunday I managed to walk up a seriously high hill on the Downs. Slowly given I’m so unfit generally but feet, legs and just everything else managed it. For me that was just astonishing. And what was even more astonishing was that after nothing ached horribly other than feeling I’d given my muscles a good proper work out.
Next rheumy appointment is mid November so I’m guessing the NHS will be happy I’m just a cheap date presently.
Absolutely awesome!!! I’m soo very pleased to hear that something is working for you, it’s been a rough time, will keep my fingers crossed that this is the start of some real improvement, you deserve it!!!
Thanks all of you. It is nice being a cheap date presently and so the only thing is to take full advantage of it. I know from all your experiences that many of these things don’t last sometimes too. Another bit of good news came in yesterday. My full inflammatory spinal MRI results came in. It appears fairly normal for a 55 year old woman. Some degenerative issues in lumbar spine but nothing of much else, other than like many others in my family I’ve got a bowel that wants to be diverticular but so far that isn’t an issue either.
That’s great news! I’m working my way up to 6 a day - had been on 4 for ages, tried going straight up to 6 in February and (hopefully coincidentally) ended up in hospital 1 month later with what they now think was encephalitis . Have been understandably reluctant to increase again, but in the past 2 weeks have gone up to 5 and am going to have 2 weekly bloods again just in case. Aiming for 6 if all goes okay and hoping I get the same results! 4 have been okay-ish, but I’m hoping for better on 6 as still stiff and sore at times. Fingers crossed x
Definitely fingers crossed for you. I did 5 for one week and then 6 from then onwards. I have had just zilch side effects of any description not even yellow wee on it. Poor you on that hospital stay - scary in the extreme - and I so hope it was just horribly coincidental.
4 a day did very little. Obviously it was a little better but really wasn’t worth talking about. 6 day is just heaps more effective for me. So all fingers and toes are crossed for you.
️ Such great news!
. Have been understandably reluctant to increase again, but in the past 2 weeks have gone up to 5 and am going to have 2 weekly bloods again just in case. Aiming for 6 if all goes okay and hoping I get the same results! 4 have been okay-ish, but I’m hoping for better on 6 as still stiff and sore at times. Fingers crossed x
