Sulfasalazine side effects : Hi all just need a bit of... - NRAS

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Sulfasalazine side effects

27 Replies

Hi all just need a bit of advice. Started sulfasalazine on Tuesday had a headache within an hour of first tablet. And intermittent headache on Wednesday and Thursday. To day had a headache before I woke up and it’s been there all day I’m so tired and dizzy I had to leave work. I know these are listed as side effects but this is really disabling how long does it take till I can tolerate this medication?

27 Replies
Mmrr profile image
Mmrr

SSZ knocked me for six too, things did improve over a few weeks and it helped my RD. I found eating carbs helped the nausea and drinking lots of water helped reduce the headaches.

Unfortunately I had to give it up as I developed an allergy to the salacytic acid component.

in reply to Mmrr

Thankyou x

Lyndy profile image
Lyndy

Sorry to hear you are having problems with it... I love sulfasalazine but I know how it is when side effects develop, you end up dreading every dose. I don’t know how many you are taking but if you can drop down until your system gets used to it that might help. I would take painkillers or whatever helps... at least to begin with. We know that not every med helps everyone, so it may be that this is not one for you xx

in reply to Lyndy

Thank you I’m only on 1 tablet 🙄🙄 hey ho I’ll keep trying

AgedCrone profile image
AgedCrone in reply to

Speak to you rheumy nurse...she knows all the options.....I stuck it out for 12 weeks & had zero success...so keep in touch with the nurse.No point continuing if she thinks your symptoms aren’t going to go away.

charisma profile image
charisma

I had that as my first DMARD; it made me very nauseous etc and just as I was getting over that, a reaction hit that was characterised by exhaustion then an infection along with rash all over torso (to begin with, spread later) and bloods all showing it too. Three weeks till back to normal.

Best speak to RA nurse.

in reply to charisma

Thanks just spoke to nurse said keep taking it till Tuesday if no better ring her then I will have to stop it.🥺🥺

charisma profile image
charisma in reply to

Wait and see... we are all different! I only lasted one month on it. If I’d been working, it would have been less. I was thinking earlier today that I tend to put up with adverse effects and pain far longer simply because I’m retired and there’s no rush or pressure to get out in the mornings.

Gjkas profile image
Gjkas

I had the same problem with Sulfasalazine. Bad headaches, nauseous, no energy whatsoever.

I took them for 2 weeks and had to come off them,because the nausea turned into actually vomiting. So unfortunately they didn't work for me.

Give it a few more days and see how it goes. because they are a good tablet for

Rheumatoid. Just as long as you can tolerate the side effects.

Hope you feel better soon. 😚.

Pinkypie2018 profile image
Pinkypie2018

I felt i couldn't tolerate sulfasalazine even though it helped my joint pain. My rheumatologist was quite cross about it although I felt like mmrr I was just literally knocked for six on it. My rheumatologist couldn't understand this. I stuck it out for 2 months and was told to stop it there on Tuesday. I can easily say I'm starting to feel better but I can feel joints stiffening again. It's still early days for your body to adjust to new meds, so if you can you should try and continue but if your having such effects on 1 tablet a day your gonna find it tougher once you get to the full dose of 4 tablets a day, that's when my side effects hit me hard. It was six weeks in when I noticed a difference in my joints, as you know it takes awhile for them to work.

HappykindaGal profile image
HappykindaGal

It takes a bit of time this one. I was quite nauseous for a while. I spoke to the pharmacist at the gp practice who said try and hang on for six week which I did. He was right, they stopped and I’ve not had any side effects since.

achyknitter profile image
achyknitter

I had the same problem with Sulfasalazine - I was so dizzy I could not move from my chair - and had to stop. I now take methotrexate and hydroxychloroquine and am fine.

Bluepegasus profile image
Bluepegasus

Thank you for asking the question J1707, I’m grateful to have seen all the replies. I’m on one tablet at the moment about to go up to 2. I’ve been fine except for dreadful heartburn but am quite worried about increasing the dose. I was on methotrexate and hydroxychloroquine which were a killer for me. So glad it’s working for you achyknitter (I’m an achyknitter too!), how different we all are.

Bookworm55 profile image
Bookworm55

I’ve had a bit of a rocky road with Sulfasalazine- due partly to a mix up over who was prescribing it. This meant that the side effects of mild nausea and headaches I’d had at the beginning (Aug)returned when I restarted it. My prescription is 2 twice a day but, since I restarted Sulfasalazine in October I’ve not managed to take that many without side effects - so it varies between 2 or 3 a day. I’m on 12.5 mg mtx once a week too. Hoping to build up slowly to full dose before consultant app at beg of January. It does seem to be working well though!

ann_martin37 profile image
ann_martin37

I had similar side effects too. I managed to stick it out for 12 weeks and by then it was helping my joint pain significantly. The side effects then eased off and I have been taking it for four years with no problems. It depends how bad your side effects are and how much you can cope with. If they are too much for you, tell your rheumy and ask for something else. The doctors don’t take the meds so they can’t judge how bad the side effects are.

After I'd been on MTX and HCQ for 3 months, my consultant wanted to put me on 4 tablets of SSZ immediately, no gradual building up. I was worried about side-effects (as in the Patient Information Leaflet), particularly the greater than one in ten chance of getting tinnitus. My consultant and the pharmacist poo-pooed that idea. I persuaded them to let me start on a low dose, at least, so I started on one a day. After 4 weeks I had tinnitus! I've been off the SSZ for 4 months and I still have tinnitus. I also have less trust in the consultant and the pharmacist, sadly. They are lovely people, but I feel I was misled / over-ruled about the downside of SSZ.

Nuttyshirlz profile image
Nuttyshirlz

I wouldn’t be without mine. I did suffer with headaches at start my nurse told me to stick with it as it just needs time to get into system and I did and now I pop my 4 pills no problem and really does help me all side my other pills.

Anniebl24 profile image
Anniebl24

I was on one tablet for several weeks, regularly tried to get up to two tablets and had to stop after about three days every time. Also have tinnitus and dizziness. No idea if hanging in for several weeks improves things but you have to try and live during the period of time building up the dose.

Sumdy profile image
Sumdy

Hi J1707

I had to come off Sulfasalazine after a very short time. I had a bit of nausea and headache which I thought I would be able to cope with short term but strangely it affected my mood in a big way. It was like a big black cloud in my mind. I didn't feel like myself at all. Quite awful really. It quickly cleared when I stopped taking it and I was soon back to normal. Thank goodness!

My first DMARD, Worked brilliantly within the first week. Didn't have any probs until I got up tp 4 tablets. I just dropped back to 3 and carried on with it.

Thank you everyone for your advice and experiences. A great help

Balletmum71 profile image
Balletmum71

Hello J1707. Sorry to bear you are feeling grim on top of everything else.

I couldn't tolerate sulfa zalizine either .

I had a wheeze , rash and felt out of myself.

I'm on etanercept now .

I tried Leflunomide which I tolerated well but didn't work.

Happily I can tolerate etanercept and it works ! Yay

Like others have said see how you feel on Tuesday and do what your rheumy nurse has said.

There are loads of treatments available so there is one out there for you I'm sure.

Take care

Balletmum71

Hobbledehoy profile image
Hobbledehoy

Sorry that you're suffering. The sad fact is that RA meds are trial & error. It may yet work for you, or it may not suit you. I couldn't tolerate it, but it helps many. Keep your Rheumatologist closely informed. Good luck.

ellilu58 profile image
ellilu58

I feel for you. I didn't make two weeks with this drug..thought it was going to kill me...never felt as bad. If you don't improve soon, let your rheumy know and stop it. Hope you feel better soon xx

in reply to ellilu58

Thank you .... I’m getting worse I’ve a bad cough and my chest is burning so looks like I’ll be ringing the clinic again 🙄🙄

Sorry to hear you are feeling awful. I took it for three months when I was first diagnosed. It felt like a miracle drug, most of my stiffness went, but then my liver decided it didn’t like it, so I had to stop it. I hope it settles for you. There are other drugs out there if it doesn’t.

ellilu58 profile image
ellilu58

Oh you poor thing. Honestly, it was the worst drug I ever had so I really feel for you. If I were you, I'd stop taking the drug now. Don't have anymore. And don't let them fob you off that you'll 'feel better' in a couple of weeks. There are other DMARDS that you can try so don't feel bad about stopping. Hope you feel better soon xx

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