what kind of headache with sulfasalazine?

[Hippo1234567]

I hardly ever have headaches. I’ve been on sulfasalazine for about 7 weeks now and I’ve had a few episodes of sharp pains in my head. I’m worried. C is this typical of sulfasalazine? Or does it normally cause more of a typical dull ache?

[Deeb1764]

I had horrendous headaches when on this drug but after talking to my RA team they took me off it as it just became so hard to function and at that point hardly functioning anyway!

Speak to your team.

[nomoreheels]

I had to come off sulfasalazine for another issue. Headaches are a common side effect though, although the type isn't specified. If they're debilitating definitely report it to your Rheumy team, I think especially so as you rarely had them prior to starting SSZ. There's nothing worse than a headache bad enough it limits what you can do, been there & thankfully out the other end.

[Madmusiclover]

sadly I only managed 5 days on Sulfa. Headaches were awful. Talk to your rheumy.

[Belle76]

Hi this drug was the only one that I could tolerate, what dose are you on? Did you up your dose slowly eg add 1 after a week etc, you must drink lots of water (fluids) too

[Hippo1234567 in reply to Belle76]

yes I worked up slowly. I wasn’t told I should drink a lot but I did notice that I was dehydrated

[Sms94]

drink LOTS of fluids. Your usual water intake, triple it! X

[Whezziewhoozie]

obviously if you are concerned get it checked out. But I am on SSZ and grading up was pretty tricky. Headaches, which includes sharp shooting pains defo happened as well as many gastro problems and low mood. I found that getting the gastro resistant tablets defo helped. They have a coating around them and slightly more gentle on my tummy. For the headaches I managed with paracetamol and the shooting pains were also better if I took paracetamol. It’s a very tricky process and I wanted to give up and very nearly did 100 times. But once I had graded up and been on it a couple of weeks all the side effects went. I totally understand though if it’s too much!

[Hippo1234567 in reply to Whezziewhoozie]

my appetite has changed, you’d think I’d be thrilled as I’m overweight. But I don’t feel the signals of hunger the same and eating meals has lost a lot of pleasure. I hope it might come back?

[Whezziewhoozie in reply to Hippo1234567]

It does come back - , I needed to eat very bland plain food and was not interested in cooking- which I love and I am not opposed to a bit of spice either! Eating was defo a chore and I lost all enthusiasm… It’s a rough couple of months but I assure you that you come out the other side and back to normal on everything, the headaches subside, the nausea, goes and so do all the gastro symptoms. Like I say it’s a lot and I understand why people stop.

[BMCV]

I couldn't tolerate the SSZ at all. Headaches, very foggy head and total loss of taste as well as dizziness. Only lasted 6.5 weeks on it then had to come off it

[Zephre]

Hi there I've been on Sulphasalazine for few years now ,I didn't have headaches with it but it takes a while to get used to them took me a while ,but I'm still in them doesn't always work for everyone trial n error good luckx

[Beadie]

Hi I've been taking sulfasalazine for 3 yrs 1500mg twice a day now along with 10mg leflunomide once a day, at the start I had a few headache problems but not any for a while now, ask your RA team, they are the best to ask for advice as everyone is different and has different oddities with any meds . So to be sure and safe check with your team its always advisable! either nurses or consultant in RA .Hope this helps.

[Jaysharp]

I've been on SSZ for a couple of years. Only take 2 x 500mg a day. My bowel couldn't handle more than that. So also on 200mg Hydroxy and currently down to 1mg Pred. Never had any headaches, but our bodies all different and respond in unique ways - the whole medication scenario for RA and autoimmune disease in general is a bit hit and miss, trial and error. I've lost a lot of trust in the medical profession and am instead working on my microbiome, following current research on causes & exploring Functional Medicine. So my advice is keep your Rheumi up to date, and hopefully you'll find what works for you soon - and at the same time explore beyond the conventional wisdom and medical practice, which is out of touch with recent research anyway. Good luck.

[Hippo1234567 in reply to Jaysharp]

I’m also interested in gut health, I do intermittent fasting. I also take supplements and I work hard on my mental health. There’s a theory that the amount of stress I was under as a child has caused this autoimmune disease and that by tackling the issues I may be able to improve matters

[Jaysharp]

Hi. I'm with you on that. So many factors influence our immune system and health in general. Stress is a big one, especially if you've been carrying it all your life - I can empathise wih that. Then there's sleep, exercise, diet & emotional wellbeing. IMHO if you can tackle any of these it'll all help. The medicines we're prescribed are aimed at symptom control and poisoning the immune system so it can't attack you, which I find inherently wrong. Better to understand and treat the causes - and some report terrific success in this area claiming to have cured themselves etc. which I take with a pinch of salt, but hope is a key ingredient in what keeps me going.

[Jaysharp]

Hows the fasting going? I used 5-2 to get down to a better weight some years ago but have now read about numerous other health advantages. So when I've fnished my 3 months of ZOE (joinzoe.com) - microbiome, blood glucose and blood fats testing - I'm signed up to do their fasting study - I think it's 14-10 - quite tame but probably more sustainable long term.

[Hippo1234567 in reply to Jaysharp]

I’m eat within a 10 hour window usually more like 6 hour window. It’s ok, I saw my blood pressure come down, but since the first few pounds my weight has been constant. I’ve actually been doing it for a couple of years. It’s hard to know what difference is due to the IF and what is down to drugs/stretching/exercise etc. I also use the Zoe app but I haven’t been invited to do the health study yet

[Jaysharp]

Well done for keeping it up. Sorry it's plateaued. The thing that worked for me when I wanted to lose 3 stone was mostly quitting sugar. It took a long time to give up, and I still have the odd biscuit. But I'm down to 10stone now and happy at that. Since reading 'Pure White and Deadly' I have come to believe that sugar is implicated in so many diseases and I just had to get over it. I would reach for sweet snacks daily and also when stressed, and, long term, I think this set me up for my AI condition which was triggered by a particularly difficult few months in 2018. There was me worrying about becoming diabetic and taking blood glucose readings from time to time, when all the time I was unknowingly setting myself up for something very much worse. Sorry, I'm rambling. The stretching and exercise will surely do you good in many ways. Take care.

[Sprocknitter]

Hi

I have been taking Sulfasalazine for 3 years and had several side effects I don’t recall dreadful headaches but I did have several problems. It was awful but after 3 months I did find it starting to work. Being able to move joints without pain. I had a chest and urine infections the first few weeks but was glad I stuck with it. I really hope you feel better soon. Hazel

[Hippo1234567]

I can feel it working already, I hope it will be even better as time goes on. I can sleep without waking from the pain of rolling over 😌

[AcerGriseum]

Sorry to hear of your headaches. I persevered with Sulphalazine for 6 weeks but had to stop because of side effects. All over pain …not so much headaches but all over flu like symptoms..tiredness muscular pain and very restricted movements. Then went on to Leflunomide and Rituximab which worked.

Hope you get it sorted.