Sulfasalazine : What’s people’s experience of... - NRAS

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Sulfasalazine

Laura8989
Laura8989
94 Replies

What’s people’s experience of Sulfasalazine? I’m on my second week so now taking 2 tablets per day, increasing to 4 tabs by week 4. I was fine on 1 tablet but since increasing to 2 tablets 5 days ago, I’m feeling really weak, shaky & nauseous.

I’m still in a flare up and unfortunately Prednisolone and steroid injection hasn’t helped so relying on constant co-codamol :-(

I would love to hear anyone’s experiences. Thanks x

94 Replies
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Ruth12345

I felt sick and was very occasionally sick when first put on it, but i stuck with it and it wore off and unless im more tired than usual im fine but it took a little perseverance. Good luck.

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Laura8989
Laura8989
in reply to Ruth12345

Thank you for your reply. Il persevere with it :-) how long were you on it when the side effects subsided? X

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Ruth12345
Ruth12345
in reply to Laura8989

About couple of months as I remember. Hope it goes earlier for you. I still don't take them on an empty stomach as I feel dreadful if I do.

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Laura8989
Laura8989
in reply to Ruth12345

Thank you :-)

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helixhelix

Took me three months to get adjusted to them (sorry!) but then was fine for next 8 years.

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Laura8989

Thanks for your reply :-) if I know what to expect, I can persevere with it!

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AgedCrone
AgedCrone
in reply to Laura8989

Do speak to your Rheumy nurse..... When I was newly on meds I was sick every day for three months on sulphasalazine - I was ever hopeful it would settle down so stuck it out.....but when I eventually went to my rheumatologist he said I should’ve spoken to him much earlier...I had no benefit from it & I have never stuck it out like that again.

Maybe your nurse could add something or depending on circumstances, change meds....maybe 2 weeks is too short a time to give in......but never be worried about discussing your medication....it’s very much an individual choice...so call your nurse now....& take her advice.

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Laura8989
Laura8989
in reply to AgedCrone

Thank you for that, that’s good to know as you feel like you have to try new meds for a while and suffer in silence. Il see how I go, rheumy nurse is calling me in about 4 weeks so shall see how I go until then :-)

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Jamarruk

Hi. This is something I posted a while back......

I’ve been on sulpha since October last year. Was on 4 per day up until jan this year; it seems to be doing the trick and in the last month I’ve upped it to 5 per day. What I can say is that the joints although not completely pain free do feel much better. Not sure if this is due to the extra tablet or due to how long I’ve been on them?

I did forget to take them for a week in Dec when I was on holiday; well largely because of the booze; which caused a flare but that is back under control.

I wanted to give the sulpha a go before moving to MTX and have to say I’m pretty pleased thus far. Although it does make me a bit fatigued at the end of the day. On that note; what do people use to fight fatigue ??

Before sulpha I struggled to exercise but now I spin most days and if I listen to my body I can go for long runs every now and then.

I’m just 40 so hoping sulfasalazine will work out in the long term!

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Laura8989
Laura8989
in reply to Jamarruk

Well that sounds positive, are you still on it now? It’s great that it took most of your joint pain away. Did you get any side effects when first started?

Thanks :-)

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Jamarruk
Jamarruk
in reply to Laura8989

Took me a while to get from 3-4 due to tiredness and occasional stomach issues. But I persevered and now an on 5 per day.

Still get a bit tired every now and then but minimal pain so in my experience it was worth sticking with it !

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Laura8989
Laura8989
in reply to Jamarruk

Glad it’s worked for you and helped your joint pain :-)

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poemsgalore1

I was OK up to 3 tablets then on increasing to 4, I started to feel nauseous so went back to 3. But eventually I managed 4. Not on it any more, but I hope to ask my rheumy if I can add it to my Leflunomide and MTX when I see her tomorrow. Bet she says no!! :-O

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Laura8989

May I ask why you stopped the sulfasalazine? I couldn’t tolerate the methotrexate, tried both tablets and injections but felt horrendous and didn’t help my joint pain :-( how do you find the leflunomide?

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Jimbo7819
Jimbo7819
in reply to Laura8989

Hi, I have recently been through mtx both injection and oral and they made me sick too, next was leflunomide and the weight dropped off me plus Iwas even worse with that only lasted 6 months on all of the meds until I got put on sulpha, been on them for the last 6 months and really enjoying them, still got pains in my feet but these are the best for my body by far I feel. Can go about most of my daily chores no problem

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Laura8989
Laura8989
in reply to Jimbo7819

Thanks for your reply. Glad to hear you’ve found something that works for you. Unfortunately I’ve had to stop the sulfasalazine as had the worst migraine yesterday, couldn’t move or talk for an hour when I woke up. My neck and throat were swollen too, due to start lefolumide next week, let’s hope that works for me :-/

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poemsgalore1

My rheumy emigrated and while waiting for his replacement I got lost in the system. When I bacame very anaemic my GP stopped all meds as she suspected I had internal bleeding. She referred me again and when I got a new rheumy he put me on MTX. I still have intermittent anaemia but there's no internal bleeding and never was. Leflunomide is great, but caused high BP.

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Laura8989

Glad to hear there was no internal bleeding. Thanks for your replies :-) xx

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Pinkypie2018

Hi I started these tablets almost a month ago, like you once I was on the second week moving to two tablets a week I was extremely tired and just general weak feeling and not myself at all. I just took it easy as best I could an carried on increasing the dose every week, I'm now on the four tablets a day and I'm pleased to say that tired yucky feeling is now getting better. I guess it's just our bodies getting adjusted to new medication. My pharmacist said to make sure an take it with food and keep well hydrated and thankfully that has kept the nausea away.

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Laura8989

That’s good to hear that things get better, glad it has settled for you, hope it continues. Has it helped your joint pain yet? Il make sure I have a meal before taking it. :-)

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JulezH

I got massive migraines when I tried upping the dose. Ended up coming off it after a few months.

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Laura8989
Laura8989
in reply to JulezH

That’s a shame :-( what did they try next?

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Pinkypie2018

I'm definitely taking less painkillers but I did get a steroid injection at the same time as starting them so it's hard to say whether the sulfasalazine is taking effect or whether the steroid injection is still doing its job. I'm also on methotrexate since February so I'm hoping the combination of both dmards will work.

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Laura8989

Well done for sticking with the methotrexate. I couldn’t deal with the side effects are being on them for 5 months. I had a steroid injection a couple of weeks ago and it did nothing :-( hope things carry on improving for you.

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Minty1972
Minty1972
in reply to Laura8989

I tried methotrexate and it did not agree with me. Ended up loosing every hair on my body and Stephen Johnson’s syndrome., fortunately the hair on my hair grew back but the rest is still very fine

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JulezH
JulezH
in reply to Laura8989

I went onto Enbrel injections which worked a bit more but gave me horrible rashes. Headaches stopped almost immediately

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Laura8989
Laura8989
in reply to JulezH

The side effects from these meds are not nice! I’m feeling so spaced out at the moment :-/ got to give it longer though. Glad you found something that works for you.

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Biofreak

Methotrexate didn't suit me and I was switched to sulphasalazine. That was 14 years ago. I take 6 a day. They worked very well and the nausea subsided after a couple of months. After about 5 years they became less effective and a biologic was added but I am still taking them because they say biologic treatment works better when used alongside a dmard. Hopefully your nausea will settle down but if it doesn't or gets worse speak to your nurse. I was told it takes at least 12 weeks to become effective. Best wishes.

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Laura8989
Laura8989
in reply to Biofreak

Thanks for your reply. Il persevere longer. Let’s hope it settles like it did for you. :-)

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Biofreak
Biofreak
in reply to Laura8989

Here's hoping 👍

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beeckey

I was on Sulpha years ago and felt very unwell on it.Just felt so sick all the time and lost almost 2 stone on it in a short time.People that had not seen me for a little while were shocked and as soon as i was seen by my Rhuemy she stopped them right away and it never helped me in any way but some people do well on it but it was not for me.

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Laura8989
Laura8989
in reply to beeckey

Sorry to hear it didn’t work for you :-( have you found a Dmard that works for you?

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nomoreheels

I stayed on SSZ too long. I had nausea on it for which I was prescribed an antiemetic by my GP, but it didn’t help either. Circumstance really as my Rheumy was on extended leave & nobody would take the initiative & stop it, not the nurses, nurse prescriber or a locum Rheumy. Even the highest dose, nothing. It was as double therapy with MTX & when it was eventually stopped it was replaced with leflunomide which also had to be stopped. I remain on MTX.

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Laura8989

Sorry both sulfasalazine & leflunomide didn’t work for you. Seems crazy they’d give you more drugs to stop the side effects of that drug. Feels like everyone is so different with what works. How long were you on it and were you nauseous the whole time? Hope the methotrexate controls or for you. :-)

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nomoreheels

This is it, not everyone responds the same so, in effect, it's not a question we can answer definitively! I have to say though I'd rather take another (very small) tablet if it meant that I was able to stay on a more important med such as a DMARD. I continue to do so as I’ve only relatively recently started to have nausea again on MTX, after 10 years. I don't have my notes to hand but I started SSZ about 3 years ago & think I was on it around a year. The nausea worsened as I increased the dose, over a matter of weeks after starting it though. It also caused very low mood, can't honestly say depression because I know how much worse that can be but it certainly made a big difference to how I felt. Hopefully you'll be fine. 🤞🏼

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Laura8989

It definitely affects everyone in different ways. Feeling rubbish this morning, no energy, sore tummy and spaced out. Let’s hope it improves!

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nomoreheels

It does, so really even though we ask for experiences of a med it may not necessarily reflect our own. I'm sorry you're feeling so rubbish, especially feeling space out, that's horrible.

I hope the flare abates. I suppose if you can remain on SSZ that will be the test. Have you asked if the prednisolone could be increased? I don’t respond to general steroid injections (oddly enough I do to localised or targeted ones) but oral pred I do. Possibly you would too if the dose was increased for a period of time, at least until it tackles your flare? Worth asking possibly?

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Laura8989

I started on 30my prednisolone about a month ago on a reducing dose but it didn’t help at all. I don’t seem to get any relief from steroids. That’s interesting you also don’t get relief from a general steroid injection but do from targeted ones, I could ask for that next time. The dr said he couldn’t do targeted ones last time as so many of my joints hurt! I also can’t take NSAIDS as it really upsets my tummy, bit of a nightmare that neither help!

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woodstar1

Just a quick one! I've been on it years, no issues except, bright yellow pee!!

For me, along with my other meds, it works, long may it continue!!

Good luck with it 🤞🤞

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Laura8989
Laura8989
in reply to woodstar1

Haha I’m waiting for the bright yellow pee!! Glad it’s suited you, hopefully il be the same :-)

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Hodc
Hodc
in reply to Laura8989

I've just been taken off sulpha, as overdue to start amgevita. It's amazing how quickly pee returns to normal!!!

I always took mine with breakfast and dinner, and didn't find any problems. I've been on it for years, so don't really remember how I felt back then, but drink plenty of water too, as that helped. Good luck

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Whezziewhoozie

Hi,

Totally felt the same and it was a good three months getting back to feeling ok. It would just suddenly come on and I would feel shaky and sick. Been on it a yeah and Now I take it without even thinking. I agree it so hard though, if someone could have told me I would feel better in three months it would have been a lot easier to keep going!

Good luck

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Laura8989

Thanks for that, sounds like I need to persevere with it and hopefully after a few months, things will settle. Methotrexate didn’t work so I really want this to work.

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HevJ

Hi.

I would mention it to your rheumy nurse. I was on it briefly. First week fine, second feeling not myself, third week nausea and fourth I had a bad reaction. Skin flared up with all over rash and I was so ill. My bloods were all over the place. I saw my GP who told me to stop ASAP. So for me I am very wary (I’ve never had a reaction to meds before).

I appreciate it’s another strong meds which is great for some people. However keep alert of how you feel and react.

Good luck

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Laura8989
Laura8989
in reply to HevJ

Woah sorry you had such a horrible reaction to it. These drugs sure are strong. Il definitely keep an eye on things. Thanks :-)

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HevJ
HevJ
in reply to Laura8989

I know. I’ve always been a bit blasé about meds as I’ve just taken them. It made me reassess these meds - brilliant result if they work but they are also damaging if not right for you.

Good luck with yours

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Castroll

Hi

I am on sulazalphine and 2weeks short of the 3 month mark.

I still feel nauseous occasionally but generally feel Better in my self. Stick to it as everyone has said we will both start to feel better.

Regards

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Laura8989
Laura8989
in reply to Castroll

Glad to hear it’s settling for you. Il definitely give it a go as really want it to work. Need to get my RA controlled better. :-)

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Horse_and_hound

For me, the nausea got worse as the dosage increased. After several months on 6 tablets per day, I reduced back down to 4 per day and the nausea has almost disappeared. Now taking methotrexate by injection too. So far so good. 😊

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Laura8989

Pleased to hear you’re getting on well with the methotrexate, I couldn’t tolerate it. Fingers crossed the sulfa works for me too :-)

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Esmereld

Hi Laura. Don’t hang around waiting for the nausea to pass please. Get your bloods done just in case and call your reumy nurse next day. They might be able to prescribe something for you. Or pop into your chemist. There might be an over the counter med you can have to settle things down for you. I’ve been silly in the past putting up with discomfort for whatever reason because I believed it’s just how it is and I have to accept it. It’s not necessarily so. You’ll kick yourself if you put up with this for another month just to find there’s a simple solution for you. I had sz for a good while in my early stage and had good results. No side effects except of course the yellow pee. 😂

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Laura8989
Laura8989
in reply to Esmereld

Thanks for your reply. I had a blood test a week after starting the meds and have another one next week. Keeping a close eye on my bloods. Hopefully it’l settle soon. :-)

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Esmereld
Esmereld
in reply to Laura8989

In case you don’t know, the best time to get your bloods done is when you’re at your lowest ebb/suffering a flare. They can see your levels and better understand.

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Kateb18

Hello Laura , I've been on sulphasalzene now for 5 or 6 years. Started on lowish dose, increased fairly quickly to 6 a day. It has really made a big difference, less rheumy pain and flare extremely reduced in severity. No side effects. I do have pain from osteoarthritis, bursas and tendon trouble and so on but the underlying didease iscwell managed. Must be lucky so good luck to you also!

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Laura8989
Laura8989
in reply to Kateb18

That’s great to hear that sulfa has helped your pain and RA flare ups. Sorry to hear about your other conditions.

I need to control my RA better as getting very bad flare ups. Been having once since beginning of Oct so hoping this helps! :-)

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Nuttyshirlz

If I remember right think I was a bit off for first couple of weeks when took them but my nurse told me to bear with them and I did and she was right lol being on over 3 years and no side affects now. I have a banana when take mine on morning and evening ones take after tea 🙂

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Laura8989

That’s great to hear you have no side effects now, il persevere. Feeling awful this morning but hopefully things will settle. Thanks :-)

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Nuttyshirlz

Yes it’s just til your body gets used you will be fine. I was same though didn’t think mine liked it lol then one morning woke up no affects what so ever. You just got to give it time.

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Wrh03

Ssz didn’t work for me, made me sick and tired. After 4wks had a nasty allergic reaction and plummeting white cell count. Made me really sick. Taking MTX and hcq now and these are working well so far, about 4mths in. Good luck with your medications - hope you find one that works without too much side effect

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Laura8989
Laura8989
in reply to Wrh03

Thanks for your reply. Poor you, sounds like a horrible reaction. Glad you’ve found something that works for you. It’s always a hard time when first starting new RA meds. Il try to bear with it! :-)

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Pooch22

Me too I asked for the coated ones as some didn’t seem to have it helped a little

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Bluepegasus

I was so pleased to see your post and the replies Laura, I'm about to start sulfasalazine too. I started on MTX tablets, moved to injections and couldn't tolerate either. It's hard to know how long to persevere isn't it - I really hope it settles down for you soon.

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Laura8989

Let me know how you get on with the sulfasalazine. Are you starting on 1 tablet for a week then increasing up each week? I’m due to increase to 3 tablets tomorrow and worried already! Hope it works well for you. :-)

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Bluepegasus

Thank you and I certainly will. I'm starting on one, increasing each week and hoping I don't feel as wretched as I did on MTX. Good luck with your increase tomorrow . 🙂

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Laura8989

Thank you, not sure whether I’m increase tomorrow as really struggling on the two! Hope it works better for you. :-)

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Bluepegasus

Thank you so much Laura. I'm really sorry you're struggling, it's a nightmare isn't, especially after struggling with MTX too. Take good care of yourself.

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Kazwilks

Hi Laura

Sorry for this post but sulpha did not work for me. I tried to stick with it but I was in a constant flare which had me at the end of my tether. The consultant then put me on methotrexate which I had a really bad reaction to. I am now on benepali injections and touch wood they seem to be working. I feel like I have some of my life back, mind you i sometimes overdo it when I'm having a good day then the R A surfaces just to remind me it's still there. I hope it works for you and you get some ease from the pain take care x

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Laura8989
Laura8989
in reply to Kazwilks

Thanks for your reply, is benepali a biologic? I felt like I was in a constant flare when on methotrexate, was horrible. Definitely, when I’m having a good day (feels like months ago now), I generally overdo it as feel like I used to before the RA then suffer for it!

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Kazwilks
Kazwilks
in reply to Laura8989

Hi Laura yes benepali is biologic. You have to qualify to be prescribed them in other words money comes into play as they are expensive, regardless of the fact my hands are now deformed because the other drugs did not work. R A sucks but at least now I am able to do more. The wrist pain was unbearable but thankfully that has now gone, if you are no better in a few more weeks I would push to go on biologics. Take care

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Anniebl24

I had problems with increasing the dose and the Rheumatology nurse told me to take the one tablet for two weeks and then try to increase to two. I would check with the nurse for an opinion if you are not feeling great.

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Laura8989
Laura8989
in reply to Anniebl24

Yes I think il go back down to the one tablet & see how that goes. Thanks

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ladyabosso

I wasn’t sick or anything but on monthly blood test they discovered it was destroying my red blood cells. Make sure you get monthly checks.

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Laura8989

I’m having fortnightly tests at the moment, sorry to hear it didn’t work for you. These drugs can be nasty. :-(

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patricia_210

Was on it for a few months

No real side effects only it didn’t work for me

Hope you have better results

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Didimo

Hi, I’ve been on sulphasalazine, MTX, and hydro chloroquine since January. I struggled with bad nausea for the first few months, we cut back the sulphasalazine to 2 tablets after 2 months for a few weeks then back up to 3 then 4 and that helped. I also always take tablets with food and also found that it’s better to spread the 4 tablets out over the day rather than 2 in morning 2 at night. Hope you feel better soon, the nausea is such a struggle. X

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Laura8989
Laura8989
in reply to Didimo

Thanks for your reply :-) Do you still get nausea now or has it settled down? Is the combination of meds helping your joint pain?

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Didimo
Didimo
in reply to Laura8989

I occasionally feel slightly nauseated but if I take it with some food it’s fine. It just lasted a few months. I’m doing great compared to this time last year, but lately inflammation increasing and getting pain again. See consultant next month so will see. I also get bloods was weekly now once a month. I dread to think where I’d be without the meds. This site is so helpful, everyone sharing helps so much!

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Laura8989
Laura8989
in reply to Didimo

As you say this site is amazing as you all understand as have experienced it too. :-) I hope they can help with your joint pain & inflammation. Take care

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Csavo

I have been on this for about 4 years I was also taking humira and now have changed that to truxima I take 6 pills a day and doctor was hoping to reduce the dosage but has not worked out that way get headaches and am quite fatigued and not sure which drug is doing it but hopefully it works for you

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Laura8989
Laura8989
in reply to Csavo

Is Humira a DMARD too? It’s so difficult knowing which meds are helping & which are causing bad side effects. I’m struggling on the sulfa but only been on it 2 weeks! It’s so difficult.

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Csavo
Csavo
in reply to Laura8989

Humira is a biologic drug I gave myself an injection every 2 weeks it worked for me for about 2 years then didn't have the same effect they have changed me to the biosimilar truxima and have had my first round of that which is 2 infusion drips a fortnight apart

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Laura8989
Laura8989
in reply to Csavo

I hope the new injection works well for you. :-)

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Scarlet56

Hi Laura! I have been in SSD along with mtx for about three years. I haven’t had any serious side effects and the benefit to me has been amazing. I was considering retirement as I couldn’t even hold a pen - my daughter wrote all my Christmas cards before medication. Don’t suffer - speak to your nurse she will be able to help you. Fingers crossed they soon find you the medication that best suits you - it will give you your life back. Take care

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Laura8989
Laura8989
in reply to Scarlet56

That’s so nice to read a positive story, so pleased it’s helped. I just need to find something that helps now! :-)

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oKerrio

I was fine on 2 tablets but once it increased to 3 and 4 that’s when my problems started! Reoccurring ear infections fluid trapped behind my ear drum for 3 months it was horrendous! I’m now partially deaf due to the amount of infections I picked up whilst on the medication, and have to wear hearing aids at the ripe old age of 37 . Hopefully you will have more luck than me.

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Laura8989
Laura8989
in reply to oKerrio

Gosh you poor thing. :-( have you found a other med that helps? I feel like nothing helps me. I have lots of pain in my neck glands near throat and shoulders, not sure if it’s down to the sulfa or something else? It’s making me feel really paranoid about how I’m feeling!

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ZsaZsa22

Been taking it daily for 17 years. Had orange pee for 17 years. Taking 2 two twice a day. But Scottish rheumatologist refuses to diagnose RA, even though I was diagnosed with Sero negative RA in South Africa. The sulphasalazine stops the prickly heat in my hands and feet, 30 mins after taking it. Thìs non-diagnosis is a waking nightmare.

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Laura8989
Laura8989
in reply to ZsaZsa22

It seems that they aren’t keen on diagnosing sero negative RA around here too, my diagnosis is inflammatory arthritis as my bloods are also negative but they are treating me for RA. I’m glad to hear the sulfasalazine is helping you. Take care

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Bacharia

My rheumatologist added SSZ when I was already taking MTX and HCQ, prednisolone and iron. She wanted to put me on four tablets immediately, but I said I was already taking so much I would rather start on a lower dose. I took one a day for two weeks and then 2. Then I got tinnitus and stopped!

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Laura8989
Laura8989
in reply to Bacharia

Gosh 4 tablets straight away sounds a bit drastic. Sorry it didn’t work for you. I’m on 2 tabs at the moment but been feeling awful since increasing so I’m going back down to one. It’s been giving me weird nerve pain & my skin feels so sensitive to touch, getting these weird chills. :-(

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Lyneal

I had to come off it because of feeling nauseous all the time, went on toMethotrexate tablets then injection. Do you take a folic acid tablet daily to counteract the side effects. Good luck with it.

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Laura8989
Laura8989
in reply to Lyneal

Thanks for your reply. I’ve not been told to stop the sulfa by the rheumy nurse as woke up with the worst migraine this morning & couldn’t talk or move for an hour. Also my throat and neck have swelled up. :-( starting on leflunomide next week so hopefully that’l work. :-)

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KatzeB

Sorry to hear about your flare-up and tiredness. I was on Plaquinil (hydroxychloroquinone) but was allergic to it (quinone drugs) so I had to switch to sulfasalazine. I was on 2 tabs of 500 mg twice a day for a while but I had tonnes of pain after tapering off prednisone, so my rheumatologist upped it to 3 tabs of 500 mg twice a day - I am still in some kind of pain in foot joints but a majority of them are controlled, and finally off prednisone (yay!!!). I would suggest that you try to get to the right dose before giving up on it if you could. The pain may subside and if you control your diet etc, it might help when you're at the right dosage.

I've been tired too, but I can't be sure what the true cause might be, could be my Hashimoto's, or the fibro or RA or stress, all might play a role in it. I'm seeing her again in Dec to discuss other options. Once you have one autoimmune, there's a chance of a 2nd one too.

She was talking about biologics the last time I saw her but it's so expensive (I'm currently in US) so I'd rather stick to DMARDs if I could help it. I have insurance via my employer, it's just that in case of anything, biologics can be a huge bill.

Big hugs xx

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GranAmie

MTX did for lungs but recovered now... then SSZ which caused emotional probs and brought suppressed anger to the surface... now on Truxima bio for 18 months or so which has been excellent. Still taking just 2 tabs daily of SSZ reluctantly but have displaced the anger. good luck . no replies please xx

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