Sulfasalazine side effects : Just started on these... - NRAS

NRAS

34,407 members42,788 posts

Sulfasalazine side effects

Jane76 profile image
50 Replies

Just started on these , this is my 3rd week so not on the full dose yet. Feeling really ill. Constantly dizzy. No energy. Feeling sick. No patience. Tired.

Do these side effects go? If so, how long does it take? Don’t know how long I can put up with the dizziness and feeling so crap. Did these work for you?

50 Replies
helixhelix profile image
helixhelix

Sulpha worked fine for me, and the side effects I had during first few months were digestive ones (extreme and embarrassing ones, but not debilitating) This dizziness & nausea sounds foul! I would phone your rheumy team to tell them as even tho' they're listed as a common side effects they need to know and advise you whether to continue to increase dose, or even stop.

Jane76 profile image
Jane76 in reply to helixhelix

Yes they definitely are horrible!

Thank you

Philip profile image
Philip

Hi, I’ve been on sulfasalazine, I’ve been on them for about 4 years and not had any problems.

Good luck on your hunt.

Philip

Jane76 profile image
Jane76 in reply to Philip

Lucky you Philip. Thanks anyway

SoulmanPaul profile image
SoulmanPaul

Hi. As it happens I just stopped taking Sulfasalazine. Been on them since May. Initially didn't suffer side effects until I got to 4 tabs per day when I had almost permanent nausea and frequent headaches. I stuck it out for a month or so but no improvement so after speaking to my nurse reduced to 3 per day. All was well for a few weeks...nausea and headaches stopped. However the past 3 weeks I've had terrible flatulence and bloating. The bloatings been quite scary and the other evening I honestly thought I was about to explode. I decided enough was enough and to stop for a week to see what happens. I can only add that my Rheumy nurse advised it could take up to 3 months before all side effects showed up.

Paul

Jane76 profile image
Jane76 in reply to SoulmanPaul

Thanks Paul , It’s difficult to know if I should stick it out and see if it helps. Very hard when I feel so bad though.

Philip profile image
Philip in reply to SoulmanPaul

Pore you, altogether through out the day I take 30 tablets a day and 5 injections too lol and maybe some of them help fight side effects, I have way to many illnesses £@£ lol.

Jane76 profile image
Jane76 in reply to Philip

Bloody hell! I thought I rattled with 14 tablets a day!! Lol

nomoreheels profile image
nomoreheels

Sulfasalazine beat me I'm afraid. I can usually ride out initial side effects, the ones that usually lessen as your body gets used to it but I continued with nausea & sickness despite being prescribed an antiemetic. I also developed very low mood, concerning enough to ask to stop it & I don't give up on meds easily.

I'd talk to your Rheumy or nurse Jane, the no energy/turned could be the disease not being controlled well enough but the other side effects are suspect. I feel for you.

Jane76 profile image
Jane76 in reply to nomoreheels

Thanks, on reading about this it seems it doesn’t bother some people at all but others can’t stand it.

nomoreheels profile image
nomoreheels in reply to Jane76

Twas always the way with meds I'm afraid. Don't be afraid to speak up though, some people just can't tolerate sulfa based meds.

Hi Jane76

When I was first diagnosed it was Sulphasalzine I got; bad heartburn etc, no energy. But got used to it. However, after one month suddenly felt chilled, exhausted and was unaware that an infection was developing.

Christmas Eve 2015, it was, when I had appt with Specialist, could barely get out of bed, felt so ill.

Arrived at clinic, clutching HWB, hardly able to move around, breathing weird and shallow too. And rash all over skin except face.

Immediate cessation of that drug: infection plus reaction present. Blood work took weeks to go back to normal.

Been on MTX with hydroxychloroquine since Jan 11th 2016; was sick for three weeks including Christmas.

So, as you have observed, some just don’t tolerate sulpha drugs.

Just try to be vigilant about symptoms and side effects. GP should be alert too.

Wishing you all the best with solutions to suitable treatment. :-)

Jane76 profile image
Jane76 in reply to

Thanks very much. I’m really not feeling right at all to be honest.

Mandy8175 profile image
Mandy8175

I have been on Sulfasalazine for about 8 months and mtx for 6 weeks now! I had headache, nausea, and dry mouth in the first few weeks, but only have dry mouth now.

Sulfa based drugs aren't for everyone, we all have personalized treatment plans that we found by trial and error.

Give your rheumatologist a call for a definitive answer and best of luck!

Jane76 profile image
Jane76 in reply to Mandy8175

Thank you Mandy

chrisb4 profile image
chrisb4

I was only in my second week on sulfasalazine when I stopped. Felt so dizzy, sick and could not work. Was only on half of the final dose, so my gp advised me to stop. I was also very tired and felt awful.

Jane76 profile image
Jane76 in reply to chrisb4

Sounds just like me

Jane76 profile image
Jane76

Anyone also get hot and sweaty easily?

I never usually do. But have been for a week or so.

SoulmanPaul profile image
SoulmanPaul in reply to Jane76

Hmm....its only just occurred to me but since being on Sulfa I've sweat heavily after eating anything.

Louis- profile image
Louis- in reply to Jane76

I get hot and sweaty more than the normal and I am on mtx.

Jane76 profile image
Jane76

This is the first one I’ve tried

AgedCrone profile image
AgedCrone

Ssz was the first drug I was given on diagnosis ...took it faithfully every day for 12 weeks cos that is what I was told to do. I was sick, could not eat & felt dreadful...but I was determined not to chicken out.

When I saw Rheumy my bloods showed it had had no effect & he told me never to struggle on like that again! So I never have ...but I do have a great Rheumy who seems to care & LISTENS.

Get a blood test then try talking to your Rheumy nurse ...they usually know if what you are Suffering is leading somewhere, or if you might as well chuck it in now.

Not very clinically correct...but you're the one suffering....get some advice.

Jane76 profile image
Jane76 in reply to AgedCrone

Thanks, I appreciate that!

beeckey profile image
beeckey

Sulfa beat me also worst drug i have been on and i have felt bad with quite a few.It was about 14 years ago since i was on it but i will never forget how ill i felt on it and i lost a lot of weight while taking it horrible drug but some people do well on it just shows how different we all are hope it settles for you good luck with that x

shaylanaran profile image
shaylanaran

I've been on sulphasalazine around 2 months and have just stopped taking it. I've been constantly nauseated and sick can't tolerate eating anything slowly eating less and less to the point I eventually began blacking out. Going from hot to freezing. Migraines and such a low tolerance to light. The worst thing though was how depressed and anxious I've been. I figured it was because I only have one week of school left until I started exams, a stressful time. I started reducing my stress from school but my anxiety continued to grow no longer just affecting my schooling but my relationships too as I became paranoid and was having multiple panic attacks a day and would just not leave my house unless necessary to avoid being around people lest they see what a wreck I've become. I've only stopped taking it two days but I'm feeling so much better. Obviously it works for some people but others it becomes a nightmare for. I suggest if you're already feeling this way contact your rheumatologist and find something different for you to trial. Best of luck.

Kyza84 profile image
Kyza84 in reply to shaylanaran

I had the same issue with anxiety & depression whilst taking it & I stopped taking it after a week. I tried again after 2 weeks break & felt exactly the same. It was impossible to function at work so I am no longer taking it. It made me feel horrible.

Neverending63 profile image
Neverending63

Within hours of taking it I had a terrible reaction to it. A hot itchy rash all over my face and neck that was unbearable. Had to stop it immediately. Mind you I haven’t had much luck with the others either. Leflunomide raised my BP and methotrexate raised my liver function. So can’t take either of those. Now in Benepali for 6 weeks. So far only mild itching the next day but tolerable. Some people just seem to have bad reactions to the meds unfortunately. I’m 2 years down the line and still haven’t got it right !

Paulajolo profile image
Paulajolo in reply to Neverending63

Same here. 2 years in Dec. Every drug so far has caused allergic reaction. Sulfasalazine was the worst.

Srf8 profile image
Srf8

I have just given up on it too. Spent 3 weeks trying to get beyond 2 tablets. Horrible tummy, sweats, rash, zero energy. Fortunately had appointment with Rhemy nurse who took me off them.

Suzy-P profile image
Suzy-P

I had the most dreadful side effects from Sulfa-it was the first drug I tried and initially it was fine but as soon as the dose was increased I became so ill -feverish, unable to keep anything down, headaches etc. I was told by my consultant to stop taking it immediately and when I felt better to come and see her. I then started on Methotrexate which is fine if I keep the dose to 15 mgs per week and now I take Leflumonide 10mgs a day and that is fine too. We are all different - don’t struggle on as there are alternatives out there and it’s a matter of finding the right combination for you. Good luck.

Gowp77 profile image
Gowp77

Hi there. I found it difficult to adjust to taking sulfasalazine. To begin with, I felt really dizzy, exhausted and light headed, along with low mood and tearful. I took some time off work to rest (few weeks). The first month was the worst, although gradually got better every week, although it was a very slow process. I've been on them 6 months now and they have made quite a difference to pain and swelling and I am feeling (almost) myself again. They have made me consistently anaemic which I am hoping will settle. It was such a dilemma whether to keep going early on. Rheumy thinks to persevere. I'm glad I did now, although would like my bloods to go back to normal. I really empathise with where you are at. It's really hard. The thing that helped me was my partner helping me see that each week I was getting a bit more myself. If you have someone close to you might be good to check in with them. I think if it makes you too miserable might be good to ask for a change. Good luck. X

Hobbledehoy profile image
Hobbledehoy in reply to Gowp77

Ow 'eck! Big tale of woe for Sulfasaladine... Glad to be forewarned, cos my Rheumatology nurse murmured about trying it. The problem is that I am doing great on Mtx - except the hair thinning is not settling. But I see there are problems with all the medication, even Biologics. Am reluctant to start a long muddle of "suck it & see" when there is no real likelihood of improvement. Unless anyone has the magic formula..?! Any/all feedback appreciated. Best wishes to everyone. This is still Our Life! x

Gowp77 profile image
Gowp77

Was just thinking too, are you getting your bloods monitored? X

Jane76 profile image
Jane76 in reply to Gowp77

Yes just had my first blood test

nattynooo profile image
nattynooo

Hello I have been taking sulfasalazine since March the only side effect I had really was bad headaches in the beginning, they lasted for about 3 weeks and a little bit of nausea. My main side effect was it gave me really really bad thrush. 3 weeks ago we halved the dosage back down to two tablets a day and I have been fine ever since and I also started benepali which is a biological this week and dropped the methotrexate injections x good luck, but if it's making you feel that bad speak to rheumatology ....my rheumatology department are amazing and so the nurses.

sappy profile image
sappy

Hi sounds like you are having a tough time? I have been on Sulfra for about 5 weeks and I have suffered with awful headaches and fatigue like never before. Its been so bad I have had to take some time off work which isn’t like me. My GP convinced me that I had to give the Meds chance and needed to stop pushing through the pain and fatigue at any cost. I have AS so already take biologics and as I have also been changed from Enbrel to Benepali I really don’t know what is causing what? I plan to return to work next week but am worried I won’t sustain the hours as I still feel wiped out much of the time. The headaches are slowly decreasing tho which is a positive.

I hope you find relief soon

Lisa

Harimah profile image
Harimah

I've been prescribed Sulfasalazine after having to come off Methotrexate but hav'n't taken them yet and I don't think i'm going too, Methotrexate caused breathing problems among other things which I still have and it's worsening, From the research i've done online it seems Sulfasalazines side effects are just as bad and it's a case of the cure might kill me first, But since it's me it'll kill not the Rheumatologist that's alright is'n't it

Flash180 profile image
Flash180

Hello, after about two weeks on sulfa I started to get a weird rash on my eyelids. Doc took me off of them, precautionary step, the rash went away and I don’t take them anymore. Of course it could have been something else but seems to make sense it was the sulfa. Good luck to you.

Paulajolo profile image
Paulajolo

Nasty drug. Be very careful. If you have side effects contact your Rhumy Doc. It took 3 tablets to make me very sick with burnt itechy skin which took 3 months of dermatologist treatment.

Jane76 profile image
Jane76 in reply to Paulajolo

OMG that’s awful!!

Claireybee profile image
Claireybee

Hi, I’m in a similar boat. 3 weeks in and up to 3 Slulfa tablets, I’m having headaches almost daily and incredible fatigue that just hits like a bus! Fortunately the nausea is only occasional and I do have spells where I feel slightly human so I’m also questioning whether to persevere. It’s good to hear that some manage to get past it. Good luck and I hope it settles for you soon x

Peep44 profile image
Peep44 in reply to Claireybee

I didn't last past 3 weeks. And 3 a day. Unbearable headaches, fatigue and was unable to do anything but lay on the couch. It was like I had to flu. I had previously been on Plaquenil which was a breeze to take, and was working well until after 4 months I became insanely itchy. I didn't want to invest any more time in the Sulphasalazine.

Jane76 profile image
Jane76

At the moment I’m having them every 2 weeks

RichardG profile image
RichardG

Everyone is different but I never got past 1 tablet a day. Such extreme stomach pain, really couldn't tolerate it. Apart from the bright yellow wee which is a bit disconcerting! On Humira and MTX now which has worked well for several years.

Relly profile image
Relly

Yes Jane, felt the same.. was taking 4 a day along with all the others they put you on! Eventually went off it as it was not worth it! There are many combinations of medications they appear to trial and treat you with, keep communication ooen with GP and hopefully something works for you.

Kyza84 profile image
Kyza84

I tried sulfa for a week & that was all I could handle. I had an extremely cloudy head, I was really short tempered, had a sore throat and just generally felt horrible. They made me feel really anxious & I felt as though if I stayed on them I would end up quite depressed. I gave them another go after a short break but I was unable to stay on them as they made it almost impossible to function at work. I contacted my specialist and said I had stopped taking them. He has given me a script for mesalamine but I'm yet to start it.

Jane76 profile image
Jane76

Came off it a few days ago and feeling better as the side effects are disappearing. Need to trial another one now, hopefully with less side effects. Or with side effects that aren’t as bad 🙄

hartmez profile image
hartmez

I started mine on Jan 19th so im a little over a month in and ive been having daily pressure headaches abd feeling a little lightheaded. Its got me going nuts! Im hoping its just this medication and nothing more serious! Its been a few weeks and hasnt subside yet! Hope your situation gets better.

Loobedoo profile image
Loobedoo

Thanks Jane and to everyone who has posted about Sulfasalazine. I’ve been on it two weeks and am zonked, sleeping almost around the clock and unable to achieve anything. I start on three tablets tomorrow but I’ve noticed that my cheeks and chest are bright red and itchy, as if I I’d got sunburnt. I haven’t even seen the sun as I’ve been sleeping in my bed. My joints are killing me and I’m desperate for something to work. A year on Methotrexate gave me nine months of excruciating infections including a pilonidal cyst in my stomach. I’m watching and waiting at the moment and hoping it will alll settle down and possibly lose the three stone I put on when I was on Prednisolone. Love and healing energy to you all <3

Jj01994 profile image
Jj01994

I am so sorry to hear your having so much trouble with Sulfasalazine. I have been on it for 12 years, 4 pills a day. I was 12 when I started and also on a lot of other meds too so I do not remember it being too bad other then the shocking bright green pee and maybe nausea, but I was also on a higher dose of MTX at the time too. I found Ondansatron was really helpful for nausea and also Methotrimeprazine, and Dramamine the motion sickness medication. I hope this helps and bit and again sorry you are having so much trouble with meds and if you need to talk I am always up to listen if you need it. Hope you get this figured out soon.

You may also like...