Recent RA diagnosis. Started sulfa 3/52 ago and was doing ok until this week when upped to 3 tabs/day. Now bloated+++, mid/right upper abdo pain, some nausea and loose bowels and just feel pants. Not expecting any change to RA symptoms this early on but if anything, these are also worse than have been for a few months!
I have decided to drop back down to 2tabs/day to see if it settles (as advised when prescribed) and am wondering about putting a call into the RA nurse ... or is it too soon (have one booked for 6th May)? I know it’s early days for me but these side effects are worse than the symptoms I have from the RA in terms of affecting my day to day life so the meds just don’t seem worth it! I think I am feeling a bit sorry for myself as I’m on holiday this week and spending time with my Mum which I want to enjoy after all the lockdown etc but the side effects are making me grumpy. I’ll have a word with myself but just needed to vent ....
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MTBadventure
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Hi MTB - welcome to our group 😉Such a shame that this has happened just when you were looking forward to a lovely week - hopefully it will settle quickly and you'll be able to make the most of the rest of your break.
Obviously if you continue to feel rough you should ring the rheumy nurse but as they advised you to drop the dose if the side effects were too much, maybe you should wait to see if they settle.
Did they advise you to try increasing the dose again? If so (and if you can face it) maybe you could do that once your holiday is over so that you can report back fully at your review? I seem to remember being told to do that when I started Sulfasalazine 🤔
I was lucky in that, apart from a few days of nausia with each dose increase, it suited me and definitely helped my joints - I'm now on 5 tablets a day. I can tell that it affects the digestive system but again for me that's a plus as my long-term IBSc is actually much better.
Hopefully things will settle but try not to be disheartened; it can take some time to find the right medication regime which is frustrating but 🤞it won't take too long.
Meanwhile, you'll find lots of support here from folk who really understand what you're going through so please keep posting 😊
Thank you for the reply-it really helps to know how others are coping and what experiences they’ve had. The advice was to reduce if started with side effects and try increasing again once settled. I’m just stubborn and wanted to get on with it but I’m realising that maybe I need to listen to the advice! Already feeling brighter today which maybe reflects my relief at making a decision! If it settles, I can try again. If not, then I can contact the RA team. Really appreciate your support
Welcome to this lovely forum. I am sorry you have recently been diagnosed with RA. Lots of great support on this forum and from NRAS too.
I think it would be worth a call to your RA nurse just to let them know the symptoms you had when you increased to 3 tablets a day.
So sorry it has impacted when you are on holiday and spending time with your mum.
I am on Sulphasalzine alongside a biologic and prednisolone at the moment. Sulphasalzine was my first medication. I had some nausea, upset stomachs when I was increasing it. I have now been on it for nearly two years now. No side effects and does help. At first it was the only medication I needed so was good. I now take 6 tablets a day and no side effects.
A call to your RA nurse sounds the best way forward to report the side effects so that they know. One of the mistakes I made when newly diagnosed was not contacting my team and just trying to deal with side effects of the meds on my own. x
Thank you for your welcome, it is very much appreciated. It does really help hearing how you found things. It’s hard asking for help as I feel like I’m bothering folk as I am aware there are many who are in a more challenging position than me. Am hoping it settles with a reduction in dose and then I can try again ... working on my patience!
It is a real shock being diagnosed with RA so be kind to yourself lovely. I am around 21 months into diagnosis and still getting my head around it. I have been through so many emotions and still have my days where I have a wobble or three. It is worrying having to take these medications too but as Jaxine says without them things can become so much worse. Early treatment is key but so daunting. Trying to work out what is the RA, side effects of the meds or something else is a challenge in itself. I so hear when you say that there are so many people who have a much tougher time of things but that doesn’t take away what is happening for you. Oh I am still working on the patience thing to. So used to having a treatment for other illnesses and getting back on my feet but again am learning that patience is needed with our RA meds as they take time to work. Never struggle on in silence though lovely. Asking for help is something I still struggle with too but am slowly but surely learning to ask for help when needed. You are doing great by joining us and we will always be here as a listening ear and support. Gentle hugs. xx
I've found that all the RA meds I've taken have had side effects and it's a case of just going with them until they begin to work. But it may not be the same for everyone so you should get proper medical advice. One other thing to bear in mind sometimes we do get other things and it might just be co-incidence so have you any signs of say a urine infection or have you eaten anything which could cause these symptoms? I've never had SUL but MTX, LEF, AZA and Benapali all had side effects which do go.
Thank you for your reply - I wasn’t sure about posting as used to just getting on with stuff myself - but this whole RA thing is very new and so it’s taking time getting my head round it. No change of diet or UTI type symptoms but will keep an eye on if it settles having dropped back to two tabs. It’s a strange concept that meds needed to stop disease progression as my current RA symptoms don’t feel like they warrant it so I struggle to put up with side effects that make me feel worse than the disease ... but I will listen to the RA team and do what’s best long term. It’s early days for sure ....
I feel better about hanging on in there having spoken out on here. The replies have very much helped as I’ve realised it’s not just me having these thoughts and side effects. It’s been quite lonely being diagnosed during a time when social contact has been limited and we’ve been told to stay home. My husband and mum have been great but having made contact with others who are in a similar place I can see how helpful that is. Just have to be brave and speak out. I wish you luck with your meds and hope side effects settle - for us both!
Sorry to hear you've had a recent diagnosis. It can be extremely hard coping with the disease itself but the plethora of side effects that these drugs can cause can be extremely debilitating to cope with. However, unfortunately without them if RA is not controlled in time it can start to effect other parts of your body, and in time your RA will become progressively worse. There is no cure for this disease so the only way forward is to take the drugs. I completly understand how you are feeling at the moment, I've experienced the same emotional turmoil as you you when I was first diagnosed. You will become stronger and face RA full on and you will cope. Believe me it s not easy it s a hard journey at times, but we need courage and determination to get through it. You will find a drug that s good for you. I also experienced chronic abdominal pain and lower back pain, which became unbearable consequently having discussed this with my nurse i stopped taking it. Often though it can take time to ride through the side effects at the beginning until you body gets used to them. Most importantly talk to your Rhymy nurse and in the mean time try not to loose hope it often takes time for you to find the right meds. Good luck
Thanks so much for your words - really helps put everything in perspective. If I’m honest, I still can’t quite believe the diagnosis so the meds feel like an aggressive response. The consultant was absolutely smashing and answered so many of my questions - I do trust them but think it’ll just take time to sink in! It does make a difference reading others stories of their path from diagnosis as you realise you’re not alone - so thanks for sharing. Fingers crossed for us all!
I was also surprised initially by my consultant's aggressive treatment approach (the rheumy nurse even commented on it) but I was actually relieved as my hands are vital to my job (which I love) and I was more concerned that they wouldn't take it seriously. The more I read and researched, the happier I was with the approach as I came to realise that there are other potential problems and I'm eager to do as much as possible to nip this thing in the bud.However, it's important that you're happy with your treatment as there's nothing RA likes better than stress so do keep in touch with your team.
I also hesitated to post on here when my problems seemed almost insignificant to those facing some other members but I've had nothing but understanding and support and it really helps to chat things through with folk who really appreciate our challenges, even when they're different ones to their own.
Hello MTB - I have just started on Sulf too and am struggling with headache and dizziness . Inflammation , though visible, never shows on my bloods but is alarming on ultrasound! Have not managed to tolerate other oral NSAIDS or Tofacitinib, so have just been on MX injections - for 9 years. Had massive disabling flares recently, hence the sulf. Let’s hope we develop tolerance ! I’m not planning to increase the dose yet but the lovely rheum nurses assure me it will get better...
Your side effects sound rather unpleasant but fingers crossed they settle and the drug helps with your flares. At least I can drop dose a bit and get used to it before trying to increase again ... need to work on my patience with introducing these meds!
Hey MTBadventure 👋Sorry to hear you're getting these side effects alongside your RA - it's such a pain! When I started taking Sulfasalazine I felt AWFUL for about 4-6 weeks. Like I had the flu. My nurse told me to persevere and then it calmed down. I doubled the dosage in January and the same thing happened plus debilitating headaches every day. I persevered for 3 months before calling my nurse and they said to put the dosage back down.
It's a funny drug, some people get no side effects and some get these nasty ones. I would say just give your nurse a call and let her know what's happened just so it's on record. Then you could talk in more detail at your next appointment.
I already feel better thanks to the support I’ve had on here. I struggle to admit I feel awful ... but along with the gastric issues it feels like someone drained my batteries! I will continue at a lower dose and speak to the RA team just so it’s noted although I full expect to be told to persevere. Which I will as hopefully things will settle for both of us!
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