Sulfasalazine: Hello everyone, Happy St Patricks Day... - NRAS

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Sulfasalazine

ccw93 profile image
30 Replies

Hello everyone,

Happy St Patricks Day!

I saw the rhem nurse's this week and they want to swap my mtx for sulfasalazine. I was still vomiting from the MTX injections. Has anyone else struggled with nausea from sulfasalazine? or had any other side effects?

Its lovely a sunny here in devon today, hope everyone has a positive day xx

30 Replies
Crusee profile image
Crusee

Hi,

My personal experience of sulfasalazine was hair thinning.Fortunately,I have quite thick hair which has helped to make it not quite so obvious.However,when I have brushed it there is a lot of hair attached to the brush and when it is wet after I gave washed it I can see just how thin it has become.For someone who already has thin hair this may have a bigger impact.

ccw93 profile image
ccw93 in reply to Crusee

oo that doesn't sound good at all!! I also have quite thick hair, but I'm not keen to lose it!

How long where you on it for?

Thank you for your response.

Birthdaygirl profile image
Birthdaygirl

Hi

I tried and tried to cope with the side effects and was left on sulphasalazine and steroids for about 18 months in the end. It did not control the RD and some of my joints were still swollen, painful and mobility was not good.

For me it caused digestive problems. My stomach distended and it turned my urine bright yellow. I also suffered headaches plus itchiness on my skin but never a rash, which they tell you to look out for because then you usually have to stop taking it. When I stopped it was a relief not to have the side effects of sulphasalazine. It didn't work on the RD for me.

If I had any advice to share it would be not to suffer for too long. I get the impression from others that it will either settle down and work within a couple of months or not as in my case. I did give myself ten out of ten for trying!

Enjoy sunny Devon and hope you get the right mix of medication soon.

BG

ccw93 profile image
ccw93 in reply to Birthdaygirl

Hi BG,

Sounds as if you stuck with despite having quite a tough time on the drug!

What other drugs did the docters swap you to instead of sulfaslazine?

Thank you x

Birthdaygirl profile image
Birthdaygirl in reply to ccw93

Like everyone on here I was willing to take anything to stop the crippling pain etc. I never missed a dose of anything. I stuck with it as I had a consultant who was adamant that if SSZ did not work all that was left was Leflunomide.

I had already failed with Hydroxychloroquine as it affected my eyes, Methotrexate because of severe nausea, hair loss and then failing Sulphasalazine with side effects already mentioned and the RD was still out of control with all of them. Some of these I took on their own or as a combination. I was also on high doses of prednisolone.

I refused Leflunomide as my fourth DMARD as my bloated stomach could take no more! and so I asked for a review of my treatment plan, with the support of my GP, as after nearly two years of trying to get the RD under control everything was failing and I Was in constant pain and mobility was poor. The consultant was very unhappy with me for questioning him.

So I changed consultant and it was the best thing ever. He gave me hope. I had no hope before. He recognised my efforts to tolerate the other drugs but also recognised that for me my body was not responding and I needed help. He then got authorisation for biologics.

I have been injecting enbrel for two years with good results.

Hope that sulphasalazine does work for you and is tolerable. It does work for many. We are all so different.

Best wishes

BG

Hi Ccw,

I am on Mtx injections, Sulfasalazine, prednisolon. I started with Sulfasalazine , no side effects, only bit tiredness. And very yellow urine. But that is not a problem as long you don't pee on the toilet seat😜.

After three month I had to take mtx as well. I didn't vomit from it, but u feel the day after I injected it not well. Very sleepy and feel likes the flue.

I hope sulfa will help for you, I don't experience real side effects.

Wish you all the best!

Greetings from the Netherlands ,

Bas

ccw93 profile image
ccw93 in reply to bassiefromholland

haha I shall try!

thankyou :)

helixhelix profile image
helixhelix

I'm on Sulpha (as well as MTX & hydroxy) and it's fine for me. No nausea, hair thinning or other nasty side effects. Yes you have orange/yellow wee but that's not really a big deal. And it did take me about 3 months to get used to it as I had a very excitable stomach to start with - but it eventually settled down.

Crusee profile image
Crusee

Hi.

I was taking it for approx 3 years in total.I was initially prescribed a dose of 3 tablets twice a day but I started to notice hair loss and it began to stress me out.(my hair is my crowning glory).my rheumatologist then reduced it to 3 tablets once per day but the hair loss continued.I didn't gave much option but to continue with it due to other medical conditions I have.I was then put on methotrexate injections which I also think caused hair loss.Due to a recent medical episode I have had I have been taken off both sulfasalazine and methotrexate and put on a low dose of steroids.I have not had sulfasalazine or methotrexate for nearly 5 months now and gave noticed a difference in the volume of my hair and also the condition seems to have improved.These drugs affect everyone differently so what I have experienced may not affect you.Good luck hope this helps.

ccw93 profile image
ccw93 in reply to Crusee

Thank you, I hope you find the right mix of drugs soon. They all seem to have different effects on different people!

Pinkbungelowgirl profile image
Pinkbungelowgirl

Hi,

When I started on Sulfasalazine, many years ago, i came out in a pink rash. Less than a week after starting this med., I was covered from head to toe and felt distinctly unwell. My G.P stopped it straight away. However a close family member stayed on this med., for many years and tolerated it well. After a few days I was back as I was.

If I'd stood in front of the brick work I would have dissappeared 😊 ( pink bungalow).

Good luck and hope you are able to make the most of this lovely spring weather.x

ccw93 profile image
ccw93 in reply to Pinkbungelowgirl

I am jealous of your pink bungalow!

Thank you, I will probably start taking the low dose and hope for the best!

I hope you are also enjoying the spring weather x

'Happy St Paddy's Day to you. I've been on sulfa since August 2015. I have no side effects at all. Make sure you are given the sulfasalazine with the letters "EC" on the bottle. The "EC" has a specail coating on them as not to upset your stomach.

Take care

Sue

ccw93 profile image
ccw93 in reply to

Thankyou, I shall make sure I'm prescribed the 'ec' version! xx

nomoreheels profile image
nomoreheels in reply to

If you have tum problems Sue check each of your tablet meds are enteric coated (ET). Also bear in mind you've not to break or crush them.

Hope you're weather's getting nicer like ours. x

Paula-C profile image
Paula-C

I was put on it when first diagnosed, ended up taking 6 tablets a day. I had no side effects what so ever, not even the orange wee. On saying that though I am one of the lucky ones, never had any side effects from MTX or Enbrel. My SLZ had the coating on as stated in the previous reply. Good Luck xx

ccw93 profile image
ccw93 in reply to Paula-C

6 tablets a day seems like a lot, is that all at once or spread through out the day?

Thank you xx

Paula-C profile image
Paula-C in reply to ccw93

When I was first diagnosed I was taking 4 a day, I had that increased to six when I things started to get bad. I took three in a morning and three in the evening. After two years of being on SLZ I then had MTX added. From what I know 6 a day is the maximum that they normally prescribed for RA. x

in reply to ccw93

The maximum dose of sulfasalazine is 40mgs per kilogram of your wieght. So if you weigh 75 kgs (165 pounds) then the maxium is 6 tablets a day. Your doctor may prescribe a lower dose.

in reply to

I live in Canada and we weigh ourselves in kilograms and pounds. I don't know the calculation for stones. I'm sure your doctor does though :)

nomoreheels profile image
nomoreheels

Sulfasalazine is one of two DMARDs I've to consider (the other being leflunomide) to add to MTX. I've done my homework & followed posts on here & decided it is like most things, you need to suck it & see! It's hit & miss with any of the meds we need, whether we respond to them &/or have side effects so I think all we can do is be guided by our Rheumy's & try what's suggested.

I'm sorry you weren't able to continue on MTX, I remember you asked about having a yellow tongue, I didn't know you were nauseous with it too that must have been miserable. I hope you get on with it & things start turning round for you. :)

ccw93 profile image
ccw93 in reply to nomoreheels

Yes along with the yellow tongue ( no longer yellow) I was being sick most weeks after my mtx which wasn't too fun! It's frustrating that a lot of the medical is educated guess work. Just hoping the sulfaslazine works. Else its back to the drawing board.

Thankyou :)

nomoreheels profile image
nomoreheels in reply to ccw93

The thing is autoimmune diseases aren't one size fits all so neither is treatment. I do well on MTX but know my limit, any higher than 17.5mg & I start having side effects (I inject & take 6 folic acid a week), my liver objects as well but take me off it & I'm in a real mess.

Good luck.

keeta profile image
keeta in reply to nomoreheels

O am having problems with methetrexate have been on 20mg injection for over a year. Have had to come off so many times because of plaurasy prolong cough. Low white cells .High liver al.count .hair loss.have felt so ill but keeps pain and swelling at bay.i see the rhuematoid doc on Tues and am really afraid as to what he will put me on next.

I have been off the injection for a month now and in so much pain .can.t sleep .pins and needles have come back.during night.i am a strong person and Don. T tell my family how bad it is .but cry myself to sleep.

nomoreheels profile image
nomoreheels in reply to keeta

Could you not do as I have & say you want to reduce the dose or even try something else? Because I was better controlled on 20mg but the side effects were too disruptive I wanted to reduce my dose back to 17.5mg but had to agree that I would add another DMARD to hopefully give me similar control as when I was on 20mg. I know what a tough decision it is when a med works wonders on the disease but the side effects become so disruptive. I was determined to keep on MTX as I know it works well for me, because of matters beyond my control I wasn't on any of my meds, including MTX, for 3 months & experienced the worst flare I've had since diagnosis.

On Tuesday do please ask your Rheumy to go through your options with you Kathy, you need honest straightforward advice of which treatment plan he's considering & he needs to involve you in the decision.

Has your Rheumy discussed a similar plan for you, reduce the MTX dose & add another DMARD? Or you could ask if he thinks whichever dose you try your lung problems, WBC & LFT will still be an issue. I'd use this time leading up to your appointment to plan your 'argument' for better care.

Take care & let us know how it goes? :)

keeta profile image
keeta in reply to nomoreheels

Oh thank u I will .I do love u all and appreciate your time replying.

I will let u know.x

NicolaP profile image
NicolaP

I've been on 5 tablets of Sulfaslazine daily (3 in the morning, 2 at night) for the last five years, originally with MTX but after developing problems with that, I now take them with a monthly injection of Simponi (a Biologic). Other than the yellow wee and slight problem with orangy discolouration on underwear (solved by using biological washing liquid) I've not had any issues with them either. However, as others have said, it does vary from person to person. I would though give another vote for the Enteric Coated tablets rather than the non-EC. For some reason I was given non EC once and they are were circular and larger than the EC variety and much more difficult to take.

Domhem profile image
Domhem

Hi, I only got diagnosed last summer and went onto sulfalasine, started with a two a day and got up to 6 a day, 3 in the morning and 3 in the evening. Other than yellow urine I had no side effects at all, it didn't completely kill the pain though and I was going to be put on plaquenil as well but I fell pregnant so am now off the drugs. (Yes it's really painful!). I had no issues with it at all. hope that may give you some confidence

ccw93 profile image
ccw93 in reply to Domhem

Hello!

Congratulations :) that was one of my concerns with the mtx. Sulfalasine obviously doesn't effect your fertility? Definitely helps hearing others experience. Hoping to start the new drugs next week xx

beeckey profile image
beeckey

I did not do well on Sulfalasine was really unwell and it did not help RD

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