Sulfasalazine?: Thoughts on Sulgasalizine for... - PMRGCAuk

PMRGCAuk

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Sulfasalazine?

SMH4CRNA profile image
17 Replies

Thoughts on Sulgasalizine for inflamation? Just got prescribed.

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SMH4CRNA
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17 Replies
piglette profile image
piglette

Sulgasalizine is a DMARD like Methotrexate. Some doctors like to add a DMARD for PMR, although they are usually used for rheumatoid arthritis. They work for some and not for others. What dose of pred are you currently on?

SMH4CRNA profile image
SMH4CRNA in reply topiglette

5mg, but only been 3 weeks. Rheumatologist wants me off. See my bio.

piglette profile image
piglette in reply toSMH4CRNA

A lot of doctors want us off. Am I right that you have got to zero pred twice? It might be that you just reduced too fast each time and the PMR never actually went into remission. Does the Tylenol help?

SMH4CRNA profile image
SMH4CRNA in reply topiglette

Tylenol really does not help. I tapered to zero, but simply replaced with NSAIDs and Tylenol. She wants me off due to cardiac risk.

piglette profile image
piglette in reply toSMH4CRNA

Some people live on 5mg for life. Have you got cardiac problems currently?

SMH4CRNA profile image
SMH4CRNA in reply topiglette

Minimal. Been on a statin for 25 years, but otherwise the heart is fine. BP has been elevated lately, but lose some weight and control pain should help. A1C 5.9.

I feel good on 5mg with celebrex 200 once per day. I go off per doctors request twice. Than suffer in between, haha.

I'll try the sulfasalazine and see what happens. I'm going on a month vacation, hope the side effects don't put a damper on the trip.

piglette profile image
piglette in reply toSMH4CRNA

I must admit personally I would try to get off the celebrex if I could. It can cause heart problems if you take it long term.

PMRpro profile image
PMRproAmbassador in reply toSMH4CRNA

Cardiac risk of PRED? My cardiologist was happy at me being on a bit more pred at one point because the a/fib was very definitely linked to the vasculitis in PMR, it flared, the a/fib was worse. And the Pain Clinic doctor here (anaesthetist) doesn't turn a hair about pred - but suggest a small daily dose of ibuprofen, 200mg, and she gets really antsy. I'd look for a more realistic doctor

Tappo profile image
Tappo in reply toPMRpro

‘the a/fib was very definitely linked to the vasculitis in PMR, it flared, the a/fib was worse’.

Interested, as my ectopic heartbeats, dizziness and pulsatile tinnitus (which I have had for a few years now - previously all investigated and NAD) are far worse since having PMR. I have been wondering if I had undiagnosed LVV (especially since reading the article on LVV and 8th cranial nerve involvement) and have PMR as secondary to this. I have tried discussing this with my rheumatologist as currently being investigated for GCA. Dismissed it straight away.

How did you find out that you’re a/fib was related to the PMR? Did you have a specific investigation? Do you think the same could be said with ectopic beats?

PMRpro profile image
PMRproAmbassador in reply toTappo

The PMR symptoms and the first a/fib episodes started about the same time. I didn't realise what it was at first until it had improved on pred, they were very intermittent and short and usually if I was overdoing something. When it was diagnosed it was as a result of a drug reaction - I was in hospital, given i.v. diazepam as a muscle relaxant for severe back spasms - no problem with the first, after the second I had a long and severe a/fib episode. I was also on high dose i.v. steroids as well and they thought that was the problem so stopped that but I had another after the diazepam. I was kept in for 3 weeks (instead of the intended 3 days) and they diagnosed sick sinus syndrome. That is the sinus node of cells that govern the electrical activity in the heart for heart rate and they think the autoimmune part of the PMR did the damage. At least 3 cardiologists agreed with my question. The trouble with quite a few rheumies I have come across is that tend to see things in black and white and in boxes! However - having had an episode that I KNEW what it was - I recognised what the previous ones had been. What I then got after medication was minimal compared with before. And since the ablation last year, even less.

Tappo profile image
Tappo in reply toPMRpro

That’s really helpful. I’m convinced mine are related.

PMRpro profile image
PMRproAmbassador

Might work, might not. Case of suck it and see. If it is an inflammatory arthritis it is more likely to help than if it is PMR. Are you good on the 5mg pred?

SMH4CRNA profile image
SMH4CRNA in reply toPMRpro

This Rheumatologist is stating I have migrating inflammatory arthritis. My symptoms are often constant, and migrates. The symptoms I feel today differ than couple years ago when my markers were elevated.

Tylenol and celebrex helps, but often do not take the discomfort away fully. But, the prednisone sure did. Unfortunately, the prednisone euphoria has worn off, and now keeps my symptoms in check at 1-3/10 with a celebrex augmentation.

The Rheumatologist gave me an option of DMARDs between the Sulfasalazine or Methotrexate. Not a fan trying another medication, but taking nothing or NSAIDs for the rest of my life is even more concerning.

piglette profile image
piglette in reply toSMH4CRNA

I definitely would not take NSAIDS for the rest of my life!! Do they help the PMR? I would have thought it a bit of a waste of time for you to take DMARDS at such a low dose of pred. But you never know.

SMH4CRNA profile image
SMH4CRNA in reply topiglette

Exactly, taking NSAIDS daily worry me. It only takes the edge off. I'm not sure if I have PMR anymore, but I do have this migrating inflamation arthritis. Most likely a result from a elevation of markers for two years.

Damn COVID vaccine

PMRpro profile image
PMRproAmbassador in reply toSMH4CRNA

"Most likely a result from a elevation of markers for two years."

No, the elevated markers don't CAUSE the inflammation, they are the result of the inflammation. And there are plenty of doctors who happily use pred at such a low dose longterm - infinitely preferable to NSAIDs.

ian16527 profile image
ian16527

I had this drug 40 years ago for Crohn's Disease. I have to say I did not tolerate it well and moved off it to Pred and Imuran. It made me nauseous. 🙁

If your wee turns yellow dont worry, it does this too. Hope it works for you👍

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