RA: Hello I’m new to this ! Diagnosed with RA... - NRAS

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RA

Riddlemethis
Riddlemethis
18 Replies

Hello I’m new to this !

Diagnosed with RA, methotrexate didn’t work , currently taking sulphasalazine and not feeling great , terribly fatigued, low mood , feeling sickly and not preventing flare ups , mainly my wrists , fingers and ankles and feet, has anybody else experienced this on sulphasalazine? Methotrexate was damaging my liver so had to stop that , I feel like my life is not living as it should right now , I don’t sleep well and feel depressed with it all .

18 Replies
oldestnewest
oldtimer

Sorry to hear that you're not improving.

Keep a record and let your medical team know.

There are other alternatives - have a look at the treatment pages on the NRAS site.

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Riddlemethis

Many Thanks old timer , i,m back at the hospital in may so i'll have a good chat about other alternatives ill also look at the treatment pages on the site . Thank you :)

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helixhelix

A few people on here have had problems with sulpha affecting their mood, so be sure to tell your medical team. I was on it for years with no problems once I’d got used to it. But that did take a couple of months.

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Riddlemethis

Thank you , hopefully after a month or so things will settle , and I do hope so , ra can be so debilitating and painkillers don’t seem to touch it , been having to use steroids on and off for months . It took just over a year to finally get a diagnosis. I was shocked how many points of inflammation on my body my specialist doctor found . I do know there’s a lot of trial an error to suit the right medications. Thank you very much for your response helixhelix. 👍🏻

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ceckyblever

Ask your doctor for pain meds it takes awhile for the sulfar medication to work

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RichardG

These drugs do take a while to act I think and there are other alternatives but they have to try the easy (and cheaper) ones first. I personally couldn't tolerate sulphasalazine which gave me terrible tummy pains. Took me nearly 2 years trying different combinations with limited improvement until I got the biologic humiria which worked well for me and within 4 weeks all the pain had gone. I am still pain free several years later. I am sure that eventually you will find something that works, it just might take a while. You have to keep going back and asking for something else.

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nomoreheels

MTX has sent my LFT's rising on occasion, usually with a dose increase but thankfully I'm pretty settled on 20mg injections, always room for improvement though!

I also tried SSZ, as double therapy with MTX, but as you're finding it affected my mood. Hopefully you'll find the longer you take it the less that will become but I gave it a really good go, months longer than I should have really but my Rheumy was on extended leave & nobody would take responsibility to stop it without her ok'ing it. I also had bad nausea which wasn't helped by the antiemetic which previously has helped. I think as long as you give it long enough to expect the low mood problem to lessen & go then you can't say fairer than that.

Your pain needs to be addressed whilst you're waiting for SSZ to work or finding a DMARD to control you so I'd push for that to be discussed at your next appointment. I'd list options, another DMARD, maybe read up about hydroxychloroquine or leflunomide & also NSAIDs to help reduce your inflammation until you're properly controlled.

Let us know how it goes next month?

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Shreeve1979

Have you been in hydroxychloriquine?

I currently take methotrexate via injection hydroxychloriquine and salphazine and folic acid with predisolone and naproxen when the predisolne was reduce I still had great pain but as stated on here they have to try tablets first for 6 months before anything else. I’m now on all of these tablets and biologics benaplai I have chronic stomach pain sometimes and with the sukfazune it made me feel very sick nearly all day are you taking omeprazole ? Folic acid? They help with that I’m now down to 5mg predisolone on biologics and all the same tablets but I have to say although still a bit of pain and stomach cramps loose bowels a few days a week I’m getting about and the pain is so much better.

It’s all trial and error but do keep going back to rheumo and tell them

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Sjhoney

Hi, I felt the same on sulphasalazine and cane off it. I’m now on lefluonomide, my fourth dmard, and I haven’t had any of the horrible side effects I got with the others so I’m hoping it will be a success. See you taking any painkillers? Your pain needs to be controlled while you wait for your meds to work. Hope this helps 😊

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Lynniechinny

I also went on Lefluomide after awful side effects of Methotrexate, I took it everyday for 14 weeks, it never worked at all for me, then went onto Sulfasalazine now awaiting appointment for Rituximab infusion.

I do hope it works for you, best of luck.

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MargaretStirling

I know how you feel I had to come of Methotrexate inject and tablet damaged my kidneys I started on sulphasaline I got as far as 4 a day then everything went wrong I took a urine infection needed antibiotic rash on my legs and back itchy too like headaches I seam to have difficulty in concentrating I’ve stopped them again I don’t think anything will agree with my system it’s been damaged

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Lynniechinny

Oh, you & I could be twins 🤣 .....I started Sulfasalazine in January this year, before that I have been on Methotrexate, then Lefluomide both failed, have the same side effects, sickly feeling, diarrhoea, fatigue also thinning hair. It’s just not doing much at all, having flare ups in my ankles, toes & wrists, but main problem is dry none productive cough.

Seen RA Consultant last week, now awaiting Rituximab infusion.

Best of luck

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Riddlemethis

Thank you everybody for your input , I’m now back at the hospital next week after being told today on the phone to stop sulphasalazine, it’s trial and error, bloody fed up with it , anyway many thanks all of you x

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Mmrr
Mmrr
in reply to Riddlemethis

I suspect my biologic isn't working either, it's so disappointing.

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Riddlemethis
Riddlemethis
in reply to Mmrr

It really disappointing, I’m taking tramadol to the maximum, omeprezole, folic acid , steroids, ibuprofen, paracetamol sometimes , hopefully the next one they try me on will work, crossing my fingers big time , sulphasalazine and methotrexate are not right for me .

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Jaxine

Ditto to everything youve spoken about, we've been on sane drugs to no avail! Same RA symptoms too, my RA is mainly in my wrists and knees. Steroids have been great for the last 7 weeks to the point I was in denial about having RA! But then it rears its ugly face. I have a beautiful family, four children good friends but unless you suffer from this condition no one understands how you feel. It's not just the swollen angry joints, horrible fatigue it effects you emotionally. The trial And error that we have to go through to try and find the right drug is demoralizing as it just adds to the emotional side. I try to be upbeat, strong and posituve but sometimes i just say ' damm it i feel like shite leave me alone im doing nothing today' I just concentrate on my good days now, and I have a lot of them.

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Barabrith

I have been suffering from severe drepression and anxiety for 3 years, 6 months after starting sulphasalazine. Stopped taking them a few weeks ago and in a couple of days my mood lifted, my anxiety virtually stopped and gets better everyday. I noticed that some pains are beginning to return but worth it in comparison.

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Riddlemethis

Sulpha has done the same to me , Rhuematology nurse said stop taking it , flare ups are back in my wrists and ankles ,they said they was going to try me on biologicals because already had methotrexate and it didn’t like my liver so then sulphasalazine which has done exactly the same - anxiety is horrendous n I feel so depressed, anyway went to rhuemy last week and changed their minds on biologicals and put me back on methotrexate and hydroxy and steroids , plus all the painkillers which don’t really help that much with a bad flare too ,I can’t get my head around putting me back on mtx due to it affecting my liver last time, so I’m writhing In pain and my head feels messy , Sometimes I wander do they actually care or is it just about the cheapest option , Only people that suffer with RA get what the disease actually does to you and emotionally makes you feel crap , and the fatigue is so bad you get up in the morning and just want to get back in bed , it’s never ending , there’s so much ignorance from people that do not have this disease, I’m hoping I can pick back up once sulpha is out my system so we’ll see , I can see putting me back on mtx again is only going to result in them sayin stop it , my liver does not like it , they know this ,I find it not right to do that , I said are you kidding me and basically I’ve just no choice in it , fed up with it all ,I just want a rest from pain anxiety etc etc .

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