I was diagnosed with RA in October last year with relatively moderate disease and quite early diagnosis.
I started methotrexate in October until end of Jan this year, when my consultant agreed to take me off it due to the side effects and I had extreme mental health issues at that point. I basically had a nervous breakdown,
He allowed me a break as my disease activity had lowered and prescribed sulfasalazine which apparently has more tolerable side effects.
I’m still not in a great place mentally, but doing better than I was. I have actually not been on any medication now for 6 weeks. But his last week I can feel symptoms returning in particular swelling of my fingers and stiff, swollen knees. Aswell as fatigue which has always been a constant.
So I know I have to go back on meds, Sulfasalazine probably, but I’m so anxious about side effects. Could anyone give me any positive feedback using Sulfasalazine?
I know I’m in denial full stop about that disease, the impact it’s had on my life, work (I’ve had to significantly reduce my hours) snd hate taking any medication. But know I have to.
Any advice, support on how this drug is tolerated would be much appreciated. The alternative is they will put me back on a lower dose of MTX and add in hydroxychloroquine.
many thanks
Kate
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Sapphire1701
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I started on methotrexate but that started damaging my liver so now on sulfasalazine, hydroxychloroquine and prednisolone plus pregabalin. No side effects of sulfasalazine but have heard some people had stomach issues.the hydroxychloroquine improved me greatly.Yes I tried to keep working but it was very manual and sadly had to give it up so know you want to try and stick with it.Yes health is poo 💩 and really alters everything sadly.
sorry to hear your problems. To be honest Sulfasalizine was no good for me on both occasions I was prescribed. Both occasions led to arrhythmias- which may be an uncommon response.
I found hydroxychloroquine worked well but it got stopped during the pandemic. I imagine when there was a theory it could help covid. It was the best drug so far to be honest.
I still find Methotrexate a chore even now after 3 years I end up in bed , getting fatigued and it’s done nothing.
I have taken sulfasalazine for many many years and it has never given me any side effects and It worked for me very well for years. Eventually after a lot of battling I was put on a biologic treatment. I think sometimes are bodies can get used to the doses after years of treatment and there needs to be a change.
A lot of the coping with RA is about feeling a bit more in control because the unpredictability of flares is a problem. You have to be able to adjust your thinking and realise you have to respect the RA but still keep doing some of the things you love. Its about choices I found my OT was the best person to help with this
Hi I was initially started on etoricoxib then 2 months later hydroxychloroquine was also added, this was before diagnosis of psoriatic arthritis 8 months later, methotrexate was then added & told to stop hydroxychloroquine, within a few days I was in horrendous pain so told to carry on with hydroxychloroquine too.
6 months later, lefluminode was also added & switched to metoject instead of methotrexate tablets, after a year more of feeling absolutely awful on metoject/ methotrexate I asked if I could stop it, it was swapped for sulfasalazine.
I'd also started getting horrendous pain in my ribs, nothing touched it, was sent for xrays, ct scan & nothing showed, was at my wits end, within a few weeks of starting sulfasalazine the rib pain dramatically reduced, I asked if I could increase the dose by 1 tablet & the pain in my ribs has gone, very very occasionally I get a niggle but omg the relief, before I couldn't sleep or sit for long due to pain so it's been a godsend & especially pleased to have no awful side effects. X
I started on Methotrexate and Hydroxychloroquin and they helped but things really improved when Sulphasalzine was added.The only lasting side effect of Sulphasalzine for me was the impressive yellow wee 😂 My dose was gradually built up to 3 tablets twice a day and with each dose increase I had a few days of slight tummy issues but it passed each time. Interestingly, my long-term IBS-C has improved a lot since being on it. 😁
i took sulpha for about 8 years along with methotrexate and hydroxy. Noone wants to take drugs, but have an6 sort of quality of life it is the best option,
It took me three months to get used to sulpha as had a very excitable stomach (basically eating or drinking away from my house was a bad idea!) but once settled it was fine, Apart of course from the orange pee.
If you are so worried about SSZ…why not explain your fears to your rheumy & ask if he will prescribe something else? Stop the worrying & ask if there is something else for you.
Sadly if a drug doesn’t suit you….all the advice in the world won’t help.
Many people take SSZ very successfully for years, but if you have such reservations about it …..It’s likely your anxiety may cause some side effects that you will put down to being from the drug.
You are very newly diagnosed, and I think you must try to take a deep breath & come to terms with the fact - that we have mostly all found it can take quite a while to find the drugs that are going to suit us.
I & many here have been taking RA drugs for 20 years or more,& most of us lead as good a life as our friends who do not have an auto immune disease.
I know that is not what you want to hear….but the magic word is acceptance…once you can really accept you do have RA…..you will be able to see how others have coped,& you will do the same.
I hope your rheumy offers you something you feel you can take….the sooner you find your drug…the sooner your life will start to get better.
Thank you for your message. And yes I’ve discussed at length with my consultant, I’ve done 4 months of methotrexate but I had a severe mental breakdown and he said there has been some link with MTX and significant detrimental mental health (albeit rare) so took me off it, and so prescribed sulfasalazine. Which I will now start.. but yes you’re right acceptance is part of the problem. I am still in denial and yes it’s still early days. But in the space of 6 months, I’ve had to give up my job, have my dog rehomed, manage the home and my daughter, worry to death how I will manage financially (I’m a single parent with very little support) and it’s been incredibly tough.
I know with time it will improve, I just as you say haven’t properly accepted the situation nor those around me really understand.
But I appreciate your message and I good to hear that with time I will adapt.
if you heave had to give up your job & have lost your income….do go to see the CAB, they will point you in the right direction to get some help.I was diagnosed in my 50’s….so was able to take my pension early, but I took Mtx for 7 years, & towards the end I had central nervous system problems & luckily my rheumy stopped it straight away & the symptoms faded away.
But at least you are now talking about acceptance…which is a major step forward. Just beaver away thinking that this time next year things will have improved…don’t try to rush things…just deal with one thing at a time.
I really hope your next drug is the start of better times for you,
that’s awful, you should not have had to give up your job, did you take any advice before doing this? Not much help now I know but NRAS have a helpline and I would contact Citizens advice to check you are claiming everything you are eligible for. Fingers crossed things improve for you. 🤗
sorry that was probably slightly misleading.. I haven’t been forced out of my job as such, but my job was quite senior and I had a lot of responsibility.. once I became unwell I just literally am unable to do the job that I used to do. It’s also in hospitality and I couldn’t do the front of house part of the role I used to as it’s v physically demanding. But it’s more my brain doesn’t work in the same way it used to.. I am in discussions with them about a small part time role which I could manage.. and I will qualify for universal credit until my daughter is 18, by which time I hope I will be a lot more stable position.
I was / am similar to you, I'm a Director of a training company with so many responsibilities, the company is owned by my dad who at 82 still works despite having colon cancer & the day after his operation having a stroke.
I found it so difficult to tell him I don't want to do it anymore but did, he was absolutely fine & just said don't 🙄 but, as a Director I still have some responsibilities, however, in the main I just deal with a couple of emails & occasional zoom meetings, I haven't actually been into work since December 2020.
I too still find it hard to accept & keep thinking they'll tell me I don't have psoriatic arthritis 🙄 then I remember how much pain I was in before & whenever the meds have been changed / stopped etc & think crikey, they must be right 🤣 I was diagnosed November 2020 so still a fairly newbie 😂
I hope you find this group really helpful as I have done, although occasionally I've read a reply that I thought was not very sympathetic or helpful but then reread them & realised they actually were, that's the problem with the written word, so many interpretations. 😘 x
I have been diagnosed with RA about 12 months ago and I have been on methotrexate injections but had to come off them due to side effects. I was given Sulfasalazine about 6 weeks ago and I like you are frightened of taking them. Did you manage to start taking them and how are you now. I will be ringing my nurse today as my pain is back in my hands and knees and it is worse than before. Hope you are sorted out now, let me know how you have gone with the sulfasalazine. Thank you
I didn’t stay on sulfasalazine, I’m now back on methotrexate, but injections this time.. tho only 2 weeks in..
I’m sorry you’re feeling frightened to start the sulfasalazine, I completely hear you. To be honest I’m like that with most medication so with me I think the psychological impact plays a big part.
Hopefully the call will your nurse will help you, I wouldn’t want to offer anything medically as I think everyone reacts differently to all these medications. I suffer on methotrexate..but it does improve the disease, so learning to live with it somewhat.
I am in denial too and it had been four years for me. It is hard. I take leflunimide and recently a biologic. Sufasaluzine didn’t work for me. Methotrexate was a hard no due to severe stomach cramps. There are lots of people on here that have been on medications for 30-40 years and they are still fine so that helps me not be as apprehensive about trying the drugs. For mant the medications make them good as new so that makes me hopeful. Best.
Hi I'm on both sulfasalazine and a biologic called Benepali. I had been on methotrexate and it messed up my liver function, they tried twice with it and the second time was worse. I have really been lucky and had no side effects from either that I'm aware of except for shingles which I had never had before which went away really quickly with treatment. There have been times where I've flared and they have increased the dose of sulfasalazine for a short time to help with this. Being honest here I would take anything rather than be disabled and unable to function with RA.
Hi, I started on sulfasalazine and have no side effects now. I had tinnitus in the first few weeks but no stomach issues. It’s not doing much at the moment, methotrexate and hydroxychloroquine have really messed up my stomach. Like you , I started with a sense of not accepting the disease, but I’ve been in pain for about 10 months now and decided enough is enough. I’ve tried the 4 Dmards and although sulfasalazine did work at the beginning ( although it took time to make a difference) it’s stopped now. I’m hoping in a couple of weeks when I get my appointment they will suggest something else. A bit terrifying the thought of biologics but I can’t carry on like this, as every day is a struggle and I live on my own with family. Good luck
I’ve been on Sulfasalazine for quite some years now and the only side effect I get now is bright orange pee 😂🤦♀️
Seriously it is one of the least harsh meds I would definitely give it a go. I had to have hydroxychloroquine added but we are currently trialling me coming off it.
Unfortunately I had an allergic reaction to sulphasalazine so no experience. But I was on hyxychloroquine for many years - it was partially successful at controlling the Rheumatoid Disease but I had (as was common then) lots of courses of steroids for flare-ups - that wouldn't happen now (i hope!)there are more options.
You might be comforted by my experience with methotrexate - my relatives thought that I was developing pre-senile dementia - but it resolved completely when I stopped because of severe gastro-intestinal side effects.
Have you had a look at the options for treatment on the NRAS website? That might give you some comfort too that there are lots of options. Unfortunately we're still at the stage of trial and error rather than being able to tailor treatment to the disease - but that will come. nras.org.uk/resource/drugs-...
Don't worry about asking for support on here - most of us have been in the depths of despair from time to time and understand it all too well! Or just to have a moan...
Hi Kate, I'm so sorry to hear what you're going through. It is so hard with very active disease that has a major impact, especially at the start. I was diagnosed just a year before you and am still getting my head around things although they have improved a lot since diagnosis. It will get better.
I started on methotrexate and hydroxycholoquine and later added sulfasalazine because I wasn't keen to go down the biologic route at that stage. We're all different but I had no side effects whatsoever from sulfasalazine, although it took a good 3-4 months to see any noticeable benefits. It's worth a go. I also switched from methotrexate tablets to injections quite early on, and that helped with some of the side effects, for what it's worth.
One thing I noticed from your post is that you don't mention any corticosteroids, like prednisolone. They're powerful anti-inflammatories and often used as a bridging treatment in the early days with RA because DMARDs can take a while to kick in. They're not right for everyone, but as your symptoms are returning and you're starting again with the DMARDs, it might be worth talking to your consultant to see if that could be an option for you, if you want it. The loss of function with RA - physical and mental - is absolutely brutal and I just wonder if it might help with the emotional impact to see some appreciable improvements while the right combination of DMARDs is found. Wishing you all the very best.
hi, thank you for your message - and yes prednisone has been offered and prescribed, but I have to be honest I refused to take it as felt I could manage.. I also can’t handle more side effects.
But it may be that we revisit.. it’s good to hear that you had no side effects with Sulfasalazine, though I know it will take time. A big part of my problem is I don’t want to be medicated..for anything.. so there is a deeply ingrained psychological element which is hard for me to overcome. And everyone is different. I don’t tolerate medication well.
But just posting here today has been helpful and I really appreciate all the replies and supportive comments xx
I’m on both and have been for years yes few side effects at start but they soon go away but now I think they don’t have same effect as had at the start. But you have to take them regularly to have any affect also what works for me doesn’t mean it’s going to work for you talk to your nurse she knows you better and as they say it’s trial and error. You will get there in time
I was also diagnosed early and went on hydroxychloroquine which was quite good but I still had some symptoms. I was given the choice of MTX and sulphasalazine. Because of the side effects I’ve heard of with MTX I decided to try S first. I had some mild headaches initially and lost my appetite for a short while. But after a few weeks I had zero side effects and I’m in remission. I know not everyone is the same but I hope this reassures you. I know someone who takes 8 sulfasalazine tablets a day for a bowel condition and she has no side effects and feels well.
hi Sapphire. Sorry to hear that you’re struggling. It is a really difficult diagnosis to deal with and I certainly felt I had no control over my life and would never be able to do some things again. I was diagnosed in 2019 and spent most of 2020 on steroids, which was great until I got a stress fracture in my foot. I tried Mtx, didn’t tolerate it, tried Sulfasalazine, had a horrible reaction to it, so went on the waiting list for biologics. I really wasn’t coping physically or mentally, went off sick from work, had a breakdown, and have slowly been trying to recover ever since. That was 18m ago and I’m now on biologics and Hydroxychloroquine which have been very effective at preventing major flares. I’m still struggling but am aware that this is an upward struggle instead of the helpless freefalling that I felt before. Ask for support wherever you can - if you don’t have close friends or family around then ask your GP - research what is available - exercise referral scheme, free courses, mental health support groups, psychotherapy, etc. and ask to be referred. Feel free to message me if you want to chat xx I hope you find the meds that work for you soon xx
Hi Tired-fed-up, thank you for writing.. a lot of what you’re saying is the place I feel I’m in. I did get a brief respite of feeling good coming off the MTX and having a complete breakdown (being off work helped too…) but this last week the pain and stiffness have returned, and the fatigue.. oh my god the fatigue is so full on. I think that’s the bit people don’t understand about this disease.. i’ve literally just woken now about an hour and a half nap and feel like I’m trudging through mud. But I’m presuming that’s because the disease is returning.. so I have restarted on Sulfa, and will see… I have a check up this week.
And likewise the mental side of it is incredibly tough. I used to be so fit & strong, would work 10-12 hour shifts, gym 5 x week, walk my dog twice a day and raise my daughter as a single parent.. now I can barely look after myself.. I think the loss of that, and the person I was (and going through the process of rehoming my dog which is breaking my heart) is just the hardest bit to get around. Especially when a lot of other people don’t understand and see you looking the same.. one comment I got from a work colleague was ‘well it’s not like you’ve got cancer, there are loads of people worse off’.. to which I burst into tears…
anyway enough moaning! Thank you for sharing your experience too, everyone here has been amazingly supportive so thank you so much xx
losing “who you used to be” and replacing it with endless fatigue and “doing nothing” (resting 😊) is really tough. I have found it helps to find non-physical things you enjoy doing like crafts, painting, writing, meditation…for me it’s a lot easier in the summer when I can sit in the garden instead of sitting in bed cos it’s cold 😞 Take care xxx and message me if you want to chat xxx
What a terribly insensitive comment from your colleague 😯. I'm not surprised you burst into tears, I would have done the same and my heart goes out to you. They are totally skewed in holding that opinion, because Methotrexate is actually a cancer medication, as are some other meds for RA. They are taken in a smaller dose over longer period to control the faulty immune system. If you explained that to your colleague, I wouldn't be surprised if their jaw dropped open a little as a lot of people don't understand RA. They don't get that it can affect your whole body, as it's your immune system that's faulty. They think it's joint wear and tear with a few aches. It's so frustrating and upsetting when people assume things without having a clue!!! Actually a few of us on this site would love to see RA renamed so it's more differentiated from Osteoarthritis. So many people who aren't affected by it or know someone with it think it's the same when it's just not.I'm really glad you've found support on this site. I hope you find the meds that work for you x
you have perfectly summed up how others perceive.. the arthritis part of the illness is so confusing to people who don’t know. I get asked all the time questions like ‘oh does that make your wrists hurt’..
but yes it’s definitely all the other stuff, it’s so much more than just a joint disease, but so few people know or understand
Thank you to everyone for replying to my post..I am quite overwhelmed at the support and hearing others experiences, has been really helpful, so thank you all xx
Hydroxy chloroquine tastes awful and sulpha turns your wee orange. Bar that I've been on both in the past no significant side effects but I'm off them now as I think they weren't really doing much. I'd try the sulpha first and see.
There is no one treatment works for all with RA...there is a lot of trial and error.
Hi. He's some positive feed back! I have been on Sulphasazine for 16 years with no problems. I now inject Etanacept weekly but still take the Sulphasazine. It does make the wee yellow but decreases in colour as the day goes. There's no harm in that. You will be monitored at first with 3 monthly blood tests or thereabouts. I have mine done twice yearly. Many years ago I used to inject Methotrexate but a few years later I became allergic to it. Stayed just on Sulphasazine until Etanercept last year
Hi. I’ve been on all of those meds and had varying results with all of them. We all react differently and RA drugs are very personal in terms of what will work for you.
But I wanted to respond to your comment about mentally being in a bad place and in denial about the disease. I was diagnosed when I was 38, so have been living with it for nearly 20 years now. There are a couple of things that I would strongly recommend.
Check out NRAS (National Rheumatoid Arthritis Society). I’m a member but you don’t to have to be. They have a helpline that you can call to talk about medication or other issues you are facing. They will listen and understand as the founder was an RA sufferer. I’ve used them for advice several times.
Secondly I would recommend talking to your GP about attending a pain management course. This will help you with the mental aspect and give you alternative methods to drugs for coping with pain. It took a while for me to get on a course as my GP wasn’t supportive. But hopefully things have moved on since I did it. You can also speak to your RA team about this.
Hi there- I tried a biologic that made me incredibly ill, getting down to 98 pounds, I was dreading having to try more. I decided to try Sulphasalazine as I had been on Hydroxy. for some time w/ no relief. It took a few months, but it worked for me. MY inflammation levels were off the charts when I started. I had some gastro intestinal issues along the way, but they went away, maybe a little headache too, but all of that passed. If you can ride out the side effects if they are not too bad, try, because it could help you. My new Rheum. Dr suggested adding Methotrexate, which I do not want to try, right now anyway, as long as this is working. Good luck. Give it some time.
I think I am in reverse of everyone who has replied.
I have been on Sulfa for a great many years combined with Benepali Bio.
My rheumatologist specialist nurse at the last appointment Suggested that I no longer needed the Sulfasalazine and told me to reduce and then stop which I have done with no Ill effects.
i have been on this medication for nearly 2 years with no side effects and it stops the swelling, however i have no side effects from methotrexate! hopefully the new medication will be better for you 👍
I’m sorry to hear that you have had such a difficult time, having also previously had a breakdown I know that it was probably difficult for you to reach out and ask questions. Well done and know that you’re not alone, as the numerous replies confirm 😊
I’ve been taking Sulphasalazine and Hydroxychloroquine for about 7 years now and don’t have problems with either. I count myself lucky that I don’t because I had terrible reactions to so many other tablets previously. Hopefully you have been referred to a pain management specialist too so that on those days you have ‘extra’ pain, you know how to deal with it.
Wishing you well as you manage your life as it is now. You’ve got this, I promise xx
thank you Karen.. yes it’s been difficult, though I feel a bit of a fraud compared to some as I guess my pain is pretty manageable (or I’m just used to it/painkillers etc) but it’s all the other stuff, the terrible fatigue, brain fog, memory lapses, any stress that causes all the symptoms to return etc.. and not being the person I was. Trying to cope on my own, finances, work, family.. and then yes the meds. Methotrexate was awful for me, though did work for the disease itself, but the side effects just awful.
Going from working full time to now barely working, and worrying all the time about how I will manage!
I know in time that I’m sure I’ll get more used to this and life will return to some semblance of normal - whatever that is - but it’s just hard right now. I’ve spoken to people who live with this disease now for years and the impact is minimal, so I’m hopeful that, that day will come.
Everyone here has been super supportive and has really helped, so thank you xx
juggling the medications is on of the hardest things about Auto immune illnesses, so many possible side effects and interactions added to which you have to cope with antibiotics when you get infections and in my case, recently pain killers and blood thinners following a fall resulting in a broken hip
I am suffering from hair loss since taking methotrexate, non of the meds Ive tried seem to help the Raynauds and so it goes on.... tempting to become a hermit until the Summer
Hi I have been on sulfasalzine since 2019, started on 2 a day twice aday till 2021 when I got Covid pneumonia and was really poorly so had to stop meds till an xray showed lungs clear, went back on them after 13 weeks but 3 aday twice aday and all good. But I was still not back to what I was before covid and I don't want anymore steroids, so RA nurse put me on an extra 1 x 10mg leflunomide with my 6 a day sulfasalzinr, and everything is great, esr 15 crp 23 I've never had any side effects from sulfasalazine nor leflunomide, try sulfa and see how you go takes a little longer but suits Me x
I’m sorry to hear you’ve been having such a horrible time, and welcome.
I’m on both MTHX and Sulphasalazine, with SSZ just being added last year. It’s worked well for me, I had severe inflammation in my hip and bone marrow odema, and since having Sulfa as well it’s much improved after my last MRI. I’m still very fatigued though, but I suppose we all get used to that.
So in short I’ve found it good in combination with MTHX, but I’ve not taken it on its own. I’ve also taken Pred and I’ve found steroid injections saved my life as well.
👍
I do understand you worrying though, I was in a similar position when my son was at home, and I have had to reduce my working hours to just 28 hrs per week, and a single parent, I found Child Credit helped me, it was a real bonus I didn’t even know I’d be eligible for. Now I’m only 5-6 years away from retirement, so I am kind of trying to hang on till then. I’m so sad you had to rehome your dog though, I’ve managed to hang onto mine, but I can’t walk him as much as I used to, but he’s an old boy now anyway. 🐶
Hopefully the meds will work well for you and you’ll be back to normal-ish soon. 🙏
I took this drug for 5 weeks gave me tinnitus and dizziness and balance issues. Still recovering but I had lots of side effects from it. But we are all different.Good luck xx
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