Possibility of coming off sulfasalazine?

[karenfizz]

I have had PMR for just over 2 years, and yesterday was my first pred free day as I have reduced slowly down to zero. In December last year I was down to about 5mg but then had a bad flare; the rheumy decided I had sero negative arthritis as well as PMR so suggested I go on Sulfasalazine as well to try to come off the pred. I did so and have managed to reduce pred since then till now. so my question is, has anyone come off sulfasalazine too, as I'm wondering if the disease has burnt itself out now? I have no joint swelling or pain, no morning stiffness (other than that which I would consider normal for 62) and feel fine. Obviously I realise the drugs are masking symptoms possibly, but as I take no other meds and am fit/healthy otherwise, I'm wondering is this a drug I have to take for life or might it be possible to get off it?

Interested to hear anyone's experience, thanks

[MrsNails]

Hi Karen

I don’t think there are many of us on Sulfasalazine so l think your best bet would be to put it in the Search Option & then you’ll get replies from other Arthritis Groups where you may get some answers.

Good Luck

MrsN

[karenfizz in reply to MrsNails]

Thanks, I'll do that

[PMRpro Ambassador]

A rheumatologist wanted to put me on sulphasalazine but as I was about to move to Italy I wasn't enthusiastic (keep out of the sun!) and needed a specialist to monitor its use which was rather problematic at the time. I am interested to hear it worked for you though.

I think you need to hang on for a bit because plenty of people are fine at 1mg pred but the last step to zero is too much.

If he is right and you have an inflammatory arthritis - whether it is LORA or anything else - I imagine you will need the sulphasalazine ongoing as it is a DMARD, it reduces the effect of the inflammatory arthritis on the joints so the damage is minimised. Unlike PMR, none of those inflammatory arthritides go into remission as far as I know.

versusarthritis.org/about-a...

[karenfizz in reply to PMRpro]

Yes, that's a good point, as it is a DMARD; I guess it depends whether the diagnosis is correct or not.. I have been on 1mg for 6wks then 0.5 so now the final step. Let's see how it goes

[PMRpro Ambassador in reply to karenfizz]

No hurry - the slower you go the more likely it is to succeed

[bakingD]

Keep us posted as I’m interested as my rheumatologist wanted to do the same with me but have resisted- am on 4.5 mg Pred now and much better than I was a few months ago- good luck!

[karenfizz]

Hi everyone, just thought I would post an update on this thread about sulfasalazine and progress; I stated sulfasalazine when on 5mg pred and gradually continued reducing pred to zero over the next 7 months, ending in Sept 2020. Since then all I have taken is sulfasalazine plus adcal; I have no joint pain (other than ropey knees from skiing/ortho surgery) and take no other meds. Total time on pred =26 months, now on sulfasalazine almost 2 years. Just wondering whether its now time to try to reduce the sulfasalazine (and whether the original diagnosis of seroneg arthritis was correct)

[PMRpro Ambassador in reply to karenfizz]

IF it really IS sero-neg arthritis you will need the sulphasalazine ongoing. It tends not to go into remission like PMR and the DMARDs stop any joint damage developing. Something to discuss in detail with the rheumy I suppose.

[karenfizz]

Sorry I should have added that my original diagnosis was PMR but on having a flare up (hand pain only) my rheumy decided I had sero neg arthritis in addition (I’m not so sure).