Struggling with sulfasalazine headaches

[GillB45]

Can anyone help - I’m on day 5 of starting sulfasalazine. Do the headaches pass once your body adjusts to the drug. Thanks in advance 🥰

[Hidden]

This happened to me to the point I couldn’t function I then had an allergic reaction requiring a ambulance. Keep an eye out for allergic symptoms. There are many who get through this with sulfasalazine

[Mmrr]

Sulphasalazine left me feeling quite yeuch everyday, headachy and so fatigued. I struggled for several weeks, could not up my initial starting dose to the therapeutic dose due to these effects, so stopped taking them. Others seem to do ok on it. It us such a personal thing, but if the effects are worse than the RA there isn't much point.

I tried all the usual suggestions...plenty fluids, changed the time I took the meds and so on, they made no difference.

[GillB45 in reply to Mmrr]

Hi. Thanks so much for taking the time to reply. I’m hoping it will all pass 🙏🏻

[KittyJ]

If you look at the patient information headaches are a very common side effect unfortunately. Many drugs will have side effects that lessen as your body gets used to it over time but obviously if you are really concerned then I’d speak to your rheumy team as they will come across this all the time and might have some solutions for you. It’s a long time ago that I had sulpha but hopefully others on it more recently here will be able to give you some tips. 🤞🏻 they lessen soon.

[GillB45 in reply to KittyJ]

Hi Kitty. Thanks so much for replying. I’m keeping everything crossed it passes xx

[AgedCrone]

After only 5 days your headaches could just be tension whilst you get used to a new drug.Try to enjoy the Easter break & look forward to the SSZ doing its job….give it time…….all the drugs we are offered need patience…..

[GillB45 in reply to AgedCrone]

Hi. Thanks so much for replying. You are right - I will see if I can stick it out longer. Happy Easter to you too 🥰

[Madmusiclover]

You are doing better than me. I only got to day 4. Ugh. 🙄 rheumy said I could stop them.

[Hidden in reply to Madmusiclover]

Me too only to day 4 🙄

[GillB45 in reply to Madmusiclover]

I’m trying my best - feel awful. Thanks so much for your reply. It helps to know how others felt 🥰

[Madmusiclover in reply to GillB45]

There’s no need to suffer. I was trying to work at the time! Impossible.

[GillB45 in reply to Madmusiclover]

Working is very hard with RA full stop then a change of meds makes it impossible to work xx

[GillB45 in reply to Madmusiclover]

I’m doing my best. Thanks for replying - it helps to know how others felt too xx

[MuppetBaby]

I don’t remember headaches but the tinnitus was horrendous. Felt like some was drilling into my head, I’ve never “felt” tinnitus before but apparently it can happen. This lasted a 7-10 days then nothing since. I’ve been on them 2.5 years now and no problems but keep an eye on it like others have said you don’t have to suffer.

[Deeb1764]

Day 7 I was taken off them as mine were crippling and just felt awful but many on here are doing well. Just keep in touch with your team

[GillB45 in reply to Deeb1764]

Hi. I will see how I go. Thanks for replying. I appreciate your help xx

[Moomin8]

Hi, I take 2 twice a day. It took quite a while to get used to them though. I remember that I built up to this dose very slowly. Definitely had headaches. I was asked to increase the the to 3 twice a day, but that made me feel really nauseous and I had headaches, so went back to my current dose. I've been on this dose for around 6 years. Just keep your team informed, and maybe ask if you can make it more of a gradual introduction - if you haven't already done that. Best of luck.

[GillB45 in reply to Moomin8]

Hi. Thanks for replying. It helps so much. I’ve been told to increase 1 extra tablet per week until I get up to 2 in the morning and 2 in the night. I’m currently taking 1 now. I’m dreading the increase. I’m so pleased they are working for you xx

[Moomin8 in reply to GillB45]

To be honest, I wouldn't know whether they're working on not, I've been on them so long! I also started on methotrexate injection (Metoject) a long time ago. I have had various biologics too. The only side-effect of Sulfasalazine is yellow wee! 🤫🤭

[GillB45 in reply to Moomin8]

Me too with the metroject injection. I’ve been on this for 11 years. The sulfasalasine seem to be working by reducing inflammation in my hands but I have nausea and indigestion. I’m praying these pass. Did you increase week by week or spread it out longer? Best of luck to you too 🥰

[Moomin8 in reply to GillB45]

It took weeks to be honest - I can't quite remember 😅

[GillB45 in reply to Moomin8]

Thanks 🥰

[janmary]

I lasted 3months on SSZ - headaches tailed off a bit after a few weeks but generally felt awful. But I’ve had bad responses to all the oral meds I’ve been prescribed . Now on Etanerecept but getting headaches on that too!

[GillB45 in reply to janmary]

Hi. I’m hoping they tale off. Thanks so much for your reply. Sending lots of thanks xx

[MichMx]

I’ve been on Sulfasalazine for RA since January. I had headaches too initially but these have now settled. Hope you feel better soon.

[GillB45 in reply to MichMx]

I’m hoping the headaches take off - thanks for your reply - it has helped me a lot xx

[Belle76]

Hi headaches are normal, best to get up to the dosage required slowly upping 1 tablet at a time over time. I have been on these for half my life and are the only medication I could tolerate. Have them with food and drink plenty of water too.

Good luck x

[GillB45 in reply to Belle76]

Good morning. I will try this to see if it helps. Thanks so much for replying. I’m dreading increasing to two tablets next week!! I think I have had a flare on top of the side effects of sulfasalazine. Hopefully I will get to tolerate 4 tablets when I get to the 4 week mark. I’m so pleased to hear you can tolerate them. Anything that’s positive is a bonus at the moment xx

[Vickie100]

Mine certainly did, I struggled for the first 2 months, now I won't give sulphasalazine.

[GillB45 in reply to Vickie100]

Okay so at least I’ve got that 2 month as a marker - Vickie did you mean you wouldn’t give them up now? I will start taking them after a meal instead of a snack. That may help too. Thanks again 🥰

[Jackie1947]

Like a lot of drugs your body needs to get used to them. If you're finding it intolerable seek advice. I've been on Sulpha for 16 years and all is fine.

[Hidden]

Morning. I genuinely can’t remember 🤔. Try upping your water intake to see if this helps..

[GillB45]

Thanks Jackie that gives me hope 🥰

[Whezziewhoozie]

I felt really rough on them for the first 3 months. Tummy and head symptoms and was close to giving up at points but I was able to push through and now have no side effects. Good luck. It’s hell to begin with so I feel for you

[Blodynhaul]

Sorry to say it didn't work for me. Many years since I tried it and felt terrible on it with awful headaches, feeling sick & feeling horrible, so only lasted a few weeks. But, as others say, it can work for some and people sometimes get over the headaches etc, Not for me to advise, but I wouldn't carry on with it. Methotrexate then generally worked for me for many years (though nausea issues!). Hope things work out for you !

[GillB45 in reply to Blodynhaul]

Hi. Thank you for your advice. I’m on Day 8 and the headaches and nausea have stopped. I’ve slowed down upping my dose over a 8 week period instead of 4!! Let’s hope this helps. Sending healing hugs to you. Xx

[KittyJ in reply to GillB45]

Well done for persevering Gill let’s hope they start to give you some relief soon.

[GillB45 in reply to KittyJ]

Thanks Kitty. I’m keeping everything crossed although I’m still only taking 1 tablet per day xx

[Boxerlady in reply to GillB45]

I found that the side effects (nausea in my case) lasted for a few days each time I increased the dose although I recently went from 5 to 6 tablets a day with no side effects at all. Hopefully it will get easier as you go on and it will have a good effect on your joints 😉

[GillB45 in reply to Boxerlady]

I was thinking this may be the case once I increase again - keeping everything crossed xx

[Boxerlady in reply to GillB45]

I found that it really helped to know that the side effects would pass relatively quickly and looking back, I'm really glad that I stuck with it as it's working well for me - hopefully you'll find the same 😉🤞🍀

[GillB45 in reply to Boxerlady]

It’s already helping and it’s good to know the side effects will again pass quickly. My inflammation seems a little less even on one tablet!! Your feedback is very much appreciated 🥰

[Blodynhaul in reply to GillB45]

Great news! Well done, sounds the right plan. Good luck and thanks! Xxx

[GillB45 in reply to Blodynhaul]

Thanks for your support xx