Follow on from my post re Sulfasalazine: So many of you... - NRAS

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Follow on from my post re Sulfasalazine

Laura8989
Laura8989
21 Replies

So many of you lovely people replied to my post the other day re side effects on Sulfasalazine which I was struggling with once increased to two tablets.

I woke up this morning with a horrendous migraine, I’ve never had pain like it. I couldn’t talk for the first hour or move. My throat also feels swollen and glands in neck have swelled up. I’ve barely moved all day :-( spoken to my Rheumy nurse and she said to stop taking it immediately.

She’s booked me in next week to start on Lefulomide. What are people’s experiences of this? I really want a DMARD to work, it’s my third one.

Thank you in advance :-)

21 Replies
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KittyJ

Hi Laura, if you put leflunomide into the search box ( filter for NRAS posts) then past posts about it will come up 😊 NRAS also do a publication about meds that you can download if you haven’t already

nras.org.uk/publications/me...

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Laura8989
Laura8989
in reply to KittyJ

Aw that’s great, il take a look. Many thanks :-)

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KittyJ
KittyJ
in reply to Laura8989

You’re welcome. I hope it works for you.

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Sidera

Hello Laura. You poor thing - what a horrible way to wake up. You read lots of awful things about leflunomide but I took it for 8 years and it was fab. No side effects at all and I felt like I didn’t have RA! So I really hope it works for you. Good luck.

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Laura8989
Laura8989
in reply to Sidera

Thanks for your reply, yes I’m feeling rotten. Not easy when you have young kiddies, luckily my husband is being amazing. It’s so good to hear a positive review, I really hope I can get on with this one! :-)

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Pinkypie2018

At least you don't have to suffer with the sulfasalazine anymore and fingers crossed the new meds will be the right one for you! Since I replied to you the other day I've been struck down with horrendous stomach cramps and feels like I'm not leaving the bathroom, these meds and their side effects. I had my routine bloods this morning and the nurse never paid any attention to my complaints. Hope you feel better soon.

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Laura8989

You poor thing, sorry to hear that. What meds are you on? Don’t suffer with it if it’s affecting you that much. I just couldn’t carry on dealing with those side effects. Take care too.

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Pinkypie2018

20mg methotrexate and now 4 tablets daily of sulfasalazine. If it doesn't improve I will ring and ask to stop sulfasalazine, I'm just lucky I'm off work this week on annual leave but such a way to be spending my week off.

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Laura8989

Bless you, it sucks doesn’t it. Rest up. I’ve had to stop working as it’s all been too bad. Let’s hope we both get some relief soon.

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nomoreheels

What a way to find out you can’t continue on SSZ, horrible. You'll still be feeling fragile I would think. It might be worth asking your team if you should avoid other sulfanomides including sulfa-based antibiotics if they feel you’ve had an hypersensitive reaction.

Hoping you feel much better & that leflunomide suits you. It was my 4th DMARD.

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Laura8989

Yes I will do, thanks for that. I really hope the next one works! Thanks :-)

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Brushwork

I used to get regular nasty headaches on Sulfasalazine, but not that bad! I hope you do better on Leflunomide.

Having RD is challenging at the best of times, must be difficult with children too.

Do remember that we are all different, with a vast array of reactions to the various DMARDs, you simply have to go through the process of trying them to find what works and is acceptable for you. Lots of information on the internet, be informed. Good luck.

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Laura8989
Laura8989
in reply to Brushwork

Thanks for your reply. Yes we’ve had to adjust a lot of things since I’ve had RA. I’m hoping the 4th DMARD will suit! :-)

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Suzy-P

I feel for you - I had exactly the same reaction to SSZ - I nearly ended up in hospital as I was so poorly. Now on methotrexate and leflumonide and no side effects in the last year or so, and I am leading a “normal” life. 🤞it continues. Good luck. One thing RA teaches you is patience!

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Laura8989
Laura8989
in reply to Suzy-P

You are definitely right there with the patience! It can be frustrating at times.

So glad you’ve found something that works for you. I’m really hoping the leflunomide works.

It’s so nice to feel more human today & actually be able to get up & get dressed! :-)

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Suzy-P

Don’t read all the side effects of leflumonide makes it sound horrendous - we are all different and react in different ways. Have a friend who has been on it for years and it worked for him too. Just make sure you tell your doctor not to prescribe sulpha based drugs in the future - just in case you have the same reaction. Good luck.

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Laura8989
Laura8989
in reply to Suzy-P

Thank you, will definitely avoid sulpa based drugs in the future! :-)

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Suzy-P

😊

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Biofreak

Sorry to hear this. It just goes to show we all react differently to Ra drugs. I just wish people didn't have to suffer so much before a drug is found that suits you. But unfortunately I suppose it's the nature of the beast. Good luck on the leflunamide.

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Laura8989
Laura8989
in reply to Biofreak

I know, it certainly takes time trying to find a drug that controls the RA. Fingers crossed the lefulomide works. :-)

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Nuttyshirlz

Sorry to hear it didn’t work for you I also had really bad side affects but was told to bear with them nurse said all give some side affects but I did as she advise over 3 years later still on them. But it’s trial and error hopefully next ones will better for you 🙂

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