Sulfasalazine questions :)

[Sfmama051004]

Hello! I'm new here and this is my first post so I hope I'm doing this right :). I'm 35 and am being treated for an inflammatory arthritis. I just started treatment a few months ago. I was started on Sulfasalazine and worked my way up to 4 pills a day. I didn't have any side effects really and after a couple of months taking them I truly felt so much better! However I just had my 3 month labs done and my ALT and AST liver enzymes were high, and my WBC is low, So my Rheumatologist told me to stop taking the Sulfasalazine. I've only been off them for 5 days and I already am having joint pain, body aches, fatigue etc. So my 2 part question is:

1) Has anyone else had high liver enzymes and LOW white blood cell counts as an effect of Sulfasalazine? I've found a few people who have said it elevated their liver enzymes, but I can't really find any information about it lowering white blood cell counts.

2) If you have had to stop Sulfasalazine, how quickly did your arthritis symptoms come back? 5 days seems extremely quick in my opinion. Just looking for some clarity.

Thank you so much!

[AgedCrone]

You are just embarking on a long journey that has many ups & downs.

No two people are the same…& Dr Google is not to be recommended at any point, but especially for you, not right now.

Take all your drug related queries to your rheumy team, then second bring your questions & doubts here.

You will almost always find someone who echos your experience..I can only just say SSZ was not for me…..but that was 20+ years ago, & contrary to many I thrived on Methotrexate.

So call your rheumy nurse & get the Benefit of her experience…forget trying to work out your blood tests,& look forward getting a medication that will suit you.

[Sfmama051004 in reply to AgedCrone]

thanks for your reply. I have already spoken to my rheumatologist, was just looking for others in similar situation.

[AgedCrone in reply to Sfmama051004]

That is good,,,,trust your rheumy & in a few months you will hopefully have found a drug that suits you & things will look brighter. But we all had to walk before we could run….well hobble!🧘‍♀️

[sylvi in reply to AgedCrone]

Well said Aged crone.xxxx

[virtualreality]

Hi there, sorry to hear you've had this setback so soon into your treatment. I've never had any significant or lasting changes in my blood monitoring tests, but did have to stop my RA medications (including sulfasalazine) recently due to having covid-19.

My RA symptoms did start to (mildly) return about a week to ten days after stopping so your experience doesn't surprise me too much. Sulfasalazine has a short half-life so it does leave the body within days when you stop it and your treatment hasn't had much chance to get established yet.

The big question is whether you're able to re-start it soon, or if your rheumatology team are looking at other options, so that you don't have too long a gap in your treatment. Sometimes changes picked up in the regular monitoring are short-lived. Fingers crossed for you that it works out soon. I'm sure other members of the forum will have more experiences of changes in the blood tests to share too.

[stbernhard]

Hi Sfmama, I was lucky and had no side effects from Sulphsalazine. As you are new to all of this, you'll have lots of questions. In many people's experience, knowing as much as possible about living with RA is a key component of a good outcome. I'd highly recommend that you have a look at the NRAS website or even give their help line a call. They can point you in the right direction with tips on what to concentrate to start with. On the website you'll find a plethora of good, sound and fact based information about all aspects of living with RA. Don't use Dr Google.I had to come off some or all of my meds a lot in the last three years and even though I was in remission, joint pain, fatigue and swelling came back within a few days at times. I recovered quickly once I was back on the meds! All the best and keep posting.

[aliplayspiano]

I took sulphasalazine for about 6 years with no issues and then it started to lower my white cell count/neutrophils. Had to come off it and a couple of months later was started on leflunomide. Meanwhile I was still taking hydroxychloriquine and I didn’t notice many symptoms. The leflunomide didn’t really work very effectively so after about a year I was switched to a biologic. This also lowers my white cell count/neutrophils so only take once a fortnight.

[cyberbarn]

I had a adverse reaction to sulfasalazine. I stopped it before I had the results of the blood tests because of the rash but when I got the results the liver enzymes were high. I just checked and my white blood cells had dropped, but not dangerously low. However they might have if I had kept taking it.

Yes, the pain and that feeling of started back again fairly quickly but my liver enzymes returned to normal too, within two weeks.

I wish you better luck for the next drug you try!

[Mmrr]

I have had lowered WBC since the beginning of my RD, 7 years ago. It can just be part of the illness and not related to the meds you take.Having consulted the haematologist my neutrophils are permitted to drop to 0.5 (very low) before I have to stop meds.

It might be worth asking your rheumatologist how they can go before you have to stop taking meds.

Liver enzymes are a different story.

[Trishfrog1]

My ALP is chronic I've just found out today and my white blood cells too low..I've been on this drug 7 wks but took my self of it because how it was making me feel ..ive been into the drs today because of another problem that I had 5 mths ago came back last night...and dr told me my blood results today and he said I'd fine the right thing taking my self of it on Friday .Hate these drugs