Sulfasalazine : I am three weeks in taking... - NRAS

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Sulfasalazine

Nicodin profile image
24 Replies

I am three weeks in taking Sulfasalazine and i am not well from it, i am always exhausted and have terrible head aches.What was your side effects with sulfasalazine.

It would mean so much to me, as i cannot really talk to my friends or family, they do not understand what i am going through.

Thank you.

24 Replies
Moomin8 profile image
Moomin8

Hi, I'm sorry you're not feeling great. 😔 I have taken Sulfasalazine for some time now. It took a while to settle down - I had to introduce it really slowly, over some weeks. Maybe try that? RA generally makes you feel pretty tired anyway, so maybe some of it is that too.

Nicodin profile image
Nicodin in reply to Moomin8

Thank you. I have gradually introduced them as well, but i do not seem to get better, it just got worse.

Moomin8 profile image
Moomin8 in reply to Nicodin

Definitely talk to your rheumatologist. We all react differently to different meds. There will be something that suits you.

bpeal1 profile image
bpeal1

Everyone reacts differently to different medications. Personally I have taken sulphasalazine we no issues at all but haven’t tolerated other drugs. I suggest you talk your rheumatology team and ask if these side effects are likely to ease or if they are something to be concerned about.

Nicodin profile image
Nicodin in reply to bpeal1

Thank you. I will speak with them

Deeb1764 profile image
Deeb1764

I was very poorly on it the headaches were bordering migraines and talking was almost impossible for some reason. When I spoke to my RA team they took me off them and I went on to something else So, speak to your team some drugs just don't suit us so its very individual and don't suffer in silence.

Lolabridge profile image
Lolabridge

Sorry to hear you’re suffering. Do contact your Rheumatology helpline/nurse tomorrow and tell them how it’s affecting you.

I had a major allergic reaction to Sulfasalazine and ended up in hospital.

MichMx profile image
MichMx

I was the same when I first started this. I increased my fluid levels and over time my body got used to the medication and now my headaches have gone. Might be worth speaking to rheumatology nurse for advice. I was also very exhausted but I think it was the RA flare that was making me feel like that. Hope your symptoms settle soon. Take care.

LuzyCLL profile image
LuzyCLL

I have also been on Sulfasalazine for three weeks. The only side effect that is new is diarrhea, not bad but 2x/day. I already was completely exhausted ALL the time. I think the Sulfasalazine has made my muscle & bone pain better. There are other DMARDS that they could try. My Rheumatologist told me to take Robitussin in the morning, it does seem to help the flu like symptoms.

BMCV profile image
BMCV

I tried for nearly 7 weeks with sulfasalazine but simply couldn't tolerate it. The headache, brain fog, terrible nausea and dizziness were awful. But the worst was completely losing my sense of taste which I found, through some research , happens to a small percentage of people on the drug. The doctor agreed I needed to come off it immediately and switched me to methotrexate and I've had no issues since then.

lewis152 profile image
lewis152 in reply to BMCV

I am glad I am not the only one ,who after 6wks lost all taste.It was over Xmas which made it worse also made me tired and had a bit of tinnitus.I am on methrotexate now so hopefully a better result.

AgedCrone profile image
AgedCrone

You aren’t the only one! It was my first drug & it was my drug from Hell.

Do speak to your rheumy team……they will know from your symptoms if things might improve…..mine didn’t…so I just stopped & moved on.

Hope you can get in touch with somebody soon.

janmary profile image
janmary

I tried S for about 12 weeks - never got up to he full dose but was still getting headaches , no appetite ,feeling unwell and losing weight. So was told to stop it

MidnightBlue2001 profile image
MidnightBlue2001

Hi there, I've been taking it about the same amount of time as you. I'm getting awful continuous headaches, my eyes feel very dry and I'm extremely tired. I feel rather out of it to be honest. However, I'm also taking Leflunomide 20mg so that's probably adding to me feeling awful. Leflunomide wasn't working well on its own so the Sulfasalazine was added. I wasn't having headaches or dry eyes when i was only taking Leflunomide so I'm thinking it's the Sulfasalazine. I'm going to see my consultant this week to discuss trying something else.

Gymcactus profile image
Gymcactus

I have been on sulfazalazine for6 years, but take the enteric coated ones that protect stomach, no problems, you need to drink plenty of water when you take them.

Rachmaninov2 profile image
Rachmaninov2 in reply to Gymcactus

I may have to take sulfazalazine, and wasn’t aware that enteric coated are available. Thanks for that information.

Madmusiclover profile image
Madmusiclover

I feel your pain. I did not suit it at all. Don’t suffer in silence. Talk to your rheumy. It’s your body; your choice. Many other drugs are available. We understand. X

cyberbarn profile image
cyberbarn

I felt awful on sulfazalazine, everything was worse. I rang the rheumy nurse who said I could try a lower dose, carry on to see if it gets better, or stop. I asked what is the point at which it is a good idea to stop and what are those symptoms. She couldn't really answer.

An hour later I realised I had a rash not just on my legs which I had noticed that morning and told the nurse, but it was no all over my body. I stopped immediately.

I am now on methotrexate injections and the mild headaches have been easily controlled by more folic acid. The difference in reactions has been huge!

Follow your instinct; is this a normal reaction you can live with, or is it more.

Nuttyshirlz profile image
Nuttyshirlz

it’s only been 3 weeks you have to give it time I was rough at the start with it and now being on it for 5yrs with no side effects whatsoever

Vixen2 profile image
Vixen2

Hi Nicodin. I’ve had RA since i was 21. (52 this yr!!!) Plus i have 2 serious eye conditions. Iritis & Glaucoma. I remember being on Sulpha yrs ago, before they started giving me a 6 weekly infusion.

I was on Sulpha, Indocid, co dydramol, co codamol & steroids. I felt like a total knackered zombie. I felt sick constantly. I was on about 10 pills a day (or more). The pain was horrendous. I had RA in every single joint. 1 day i couldn’t recognise my own brother in law. I couldn’t read or write. The fatigue was awful. I rang my consultant & she just told me to lower the dose of Sulpha. The next day i was normal again. But it took a few months for my body to get used to the meds. I suddenly stopped feeling sick too. I know it’s very depressing having this condition. But i’m so grateful for my infusion. I really can’t cope without it. It’s meant to help whenever i have an Iritis flare up. But at the moment i’m having 1 of the worst flare ups of my life. The vision’s awful in my left eye. I’ve had to go to Moorfields a&e twice in the last week. I’ve had to go on hrly steroid drops for 2 days & 2 nights. (Had to stay up both nights), just putting drops in. Then stay on them hrly during the day for 1 week & slowly taper down. Plus i’m on 3 other drops too. It’s so boring & tiring. But again i’m so grateful for the meds.

Good luck with your condition. I know it’s very hard to deal with. It’s all about pacing yourself. Know when to rest. You have to listen to your body & when you do need to take it easy. That’s what a tablet’s for. (Not the medical type). Just make a lovely cuppa, get a treat. Get into bed & put a comedy on or a good drama. As they say. Humour’s the best medicine. (Plus pain killers!) It really can take your mind off your physical crap! This forum’s great too. You can come on here & moan. Day or night. Good luck. X

Jackie1947 profile image
Jackie1947

Sorry you're experiencing this. I'm on it for 16 years now. If you feel so poorly contact your rheumatology dept for advice

Aporiac profile image
Aporiac

I also had nasty side effects from Sulfasalazine, but as others have remarked, we're all different. RA is already exhausting and not exactly mood-enhancing, so any additional tiring/depressing effects from meds are not exactly welcome! I tried out Sulfasalazine with MTX (with the usual gradual stepwise introduction), but it caused me terrible stomach problems (MTX is bad enough on it's own), generally made me feel sick and out of sorts and gave me kidney pain like I'd been in a boxing ring! I tried backing down the dose, which didn't really help, then stopped completely (the symptoms cleared in a week), reintroduced it (the symptoms came back), and then gave up! Eventually got prescribed Hyrimoz, which along with MTX controls things fairly well. As I'm sure you've already discovered, you have to be your own advocate and proactive when it comes to your condition and treatment. You can't expect miracles, but if something clearly isn't working for you then say so, and ask your rheumy team to try something else.

GordonEdin profile image
GordonEdin

Everyone is different. I had no evident side effects for a few months and it fixed my RA such that I went off and climbed a Lake District mountain. However, my liver function tests then went haywire, I felt very tired and had to stop.

You should be getting monthly blood tests so one will be due. These tests are very important If the test shows problems then you will be told to stop or reduce the dose. As others have said, if you feel really bad (and you don't believe it is because of uncontrolled RA), speak to the RA nurse to discuss the problems.

Elayda profile image
Elayda

*Update 24 feb 2023

Discontinued use on docs advice due to these side effects.*

I started taking sulfasalazine 4 weeks ago.

Like you, by week 3 I felt worse than ever with headaches, all over body aches , severe fatigue, nausea, neck pain, low appetite and low mood.

I started with 500mg per day then increased by 1 every week until I was supposed to reach 2000mg. I am currently supposed to be at 2000 mg a day.

However due to these side effects, I decided to go more slowly so in week 4 rather than upping the dose i reduced the dose to 1 a day. Then say about 2 weeks later i might increase to 2 a day etc.

If still having these side effects i will look for alternative because its impossible for me to get through the day in this state.

Hope this helps

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