Hi all I have just started taking this medicine a week ago. Previously used methotrexate but the side effects were terrible. Now I'm just started this med so on 1 in the morning 1 at night. The last 2 days have been terrible. I have bad pains all down my body into my fingers and toes. Have managed about 1 hours sleep last night and I'm worried now about these pains.. have also pins and needles in my fingers at times. Can anyone say if this is a side effect or maybe advise me what to do?? My nurse is not available only Wednesdays for 2 hours.. thanks
Sulfasalazine: Hi all I have just started taking this... - NRAS
Sulfasalazine
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Carharley
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My reaction is don't wait until you speak to your Nurse as you need advice now . I'd suggest you ring non emergency 111 or whatever it is in your area being the weekend.
Second this.
Can I ask why u say that? Do u think its bad? I managed another hours sleep there so hopefully will feel a bit better now than earlier
For peace of mind that what you're experiencing is "normal". You asked for advice but at the end of the day it's your choice.
I appreciate the advice I just wondered had anyone else experienced this. I am going to try to get the doctor on call now. I'm hoping they will know. Thank you.
Update: I have spoken to a nurse in the emergency doctor and he advised to stop taking the medication until I can speak to the rheumatology nurse and to take some ibuprofen for the pain. Hopefully it settles soon. I appreciate the replies here thank you.
Sound advice. I would have stopped it anyway.
Thank you Jackie I haven't taken any today and because I was only on it for a week I'm hoping the side effects go quickly. The arthritis isn't as painful as this.
Meds do take a time for your body to get used too. I'm a lightweight where they are concerned. You did the tight thing. Best of luck!
I understand I'm hoping they will have a solution. Been on methotrexate before I was nauseous all the time but never had an experience like this before. Was just hoping somebody else would've had the same but I understand everyone is different. I'm glad I found this forum tho x
If you have only taken 4 doses & are not taking any other meds…I’d call 111 & ask if you can just stop now!
Unfortunately we don't have 111 in Ireland but I did speak to a nurse in the emergency doctor this morning and he said don't take it until I speak to my rheumatology nurse... I had been taking it a week. The pains are still here I'm exhausted now but hopefully will soon subside.. thanks
When I first took SSZ…..I was very newly diagnosed and thought when my Rheumatologist said, give it 12 weeks to work that was gospel & what I had to do……… so I think I was vomiting every day for 12 weeks and when I fell into my Rheumatologist’s office, the first thing he said was “You should’ve stopped it a long time ago! “I never took it again.
Lesson learned…..if you feel ill very early on stop taking it…if you think about it I don’t know of any Dmard you can’t just stop taking if you feel really bad.
Hope you find something to suit you very soon.
It sounds like an allergic reaction as it's come on so.quick.
I haven't taken it since last night. Still in pain but hoping that will subside soon. I had niggly pain all week but passed no remarks was working away then all.of a sudden this just happened.. pain even in my toes.. Will speak to my rheumatology nurse but she is only available on Wednesdays.. thanks foe the reply x
stop taking it asap go drs or hospital
I took this medication and had lots of side effects , I put up with them because I thought people get side effects and it’s ‘normal’ . Persevere and will settle down . 4 months later I was on holiday and got a rash saw a pharmacist that sent me to a&e . Got given steroids and antihistamine . Didn’t mention my bloods . Week later routine bloods done and got a call from my local a&e . Get to hospital now . My alt had gone up to 1556 . (Yes no typo ) I had dress syndrome a week in hospital checking I didn’t go into organ failure . Head of rheumatology called me asking me what happened over the 4 months , they advised I should not have ignored side effects they should have been reported . I hope they find a regime that works for you
Whenever i see the name Sulphasalazine. I remember my experience. I was first diagnosed with RA i was 21. I was put on quite a few meds. Sulphasalazine was 1 of them. Along with Indocid, a high dose of steroids. Plus Co-Dydramol & Co-Codymol. I started to feel permanently sick. All the time. I felt awful. So sick. It took about 3 months for my body to get used to the meds. I was on a high dose of everything. One day. I started to feel confused. I couldn’t even read or write. I couldn’t understand a programme i was watching on the tv. I was with my husband. His brother came into the room & i didn’t know who he was. He looked familiar. But i didn’t know his name. I was scared. I was like a zombie. We contacted my rheumy. She was very calm & just said reduce the dose a bit the next day. 24 hrs later. I was normal again. It’s just so scary what drugs can do to the body. Good luck with everything.
It's crazy what they can do to ur body. U was only on 2 a day as I had just started a week before. I can speak to rheumatology until Wednesday so that's why I just stopped. I feel so much better today but the pains and pins and needles were something else. I managed to sleep early this morning so hopefully as the day goes on I will feel better a bit more. Thanks for your reply and I hope u r doing good now.
Hey Carharley. The meds we’re all on, are vital for our conditions. They can really improve things. But they can also have crap side effects. Steroids can massively improve loads of illnesses. I’ve been on & off them for yrs. I’ve also had steroids injected into my eyes loads of times. One time, i wasn’t in the mood for a needle in my eye! So i asked for the tablets instead. I was on a high dose. I had so much energy. I couldn’t believe it. I couldn’t stop cleaning. I was polishing everything in sight. (Even my boyfriend’s head!) I couldn’t sit still. Then after a while. Fluid started building up in my neck & face. My eyes were bulging like a frog. I’d become moon faced. People were giving me weird looks. Plus i started to have bad mood swings. I became quite agressive. I also ate alot. I love my food anyway. I’m a size 14. I didn’t want to get any bigger. So I was desperate to come off them. I realised a couple of mins discomfort, are worth it. Rather than months of ‘weird stuff’. So glad you’re feeling a bit better. Sleep can make a massive difference to us mentally & physically. Good luck with your app. X
Haha including ur boyfriend head good 1... its just about finding the balance so.hopefully when I speak to them they can reassure me.. I've no problem taking something to make me better but I honestly thought I was going to die the pains were that bad. I still have lots of tingling which is a side effect apparently but I'm just wiped now after the last few days. I am so glad I found this forum tho because its so nice to chat to people who understand and have maybe been there already x
I know how u feel. I always give this little ‘tip’. Just listen to your body & when it says ‘i’m knackered’. Stop everything. Get the kettle on. Get a couple of biccies or a chunk of cake. Get into bed. (I can’t live without my tablet). Put something funny on. I always go to the Royle family. (Not the real ones). I love Ricky Gervais. Anything of his makes me laugh my head off. Alan Partridge (smell my cheese) is my hero. Laughter is the best medicine! Glad you’ve found this forum too. X
That's the best advice to give... and that's exactly what I did nearly all weekend just slept as much as possible and rested... today I'm gonna have a big steak for my dinner that always makes me feel better... have a good day and thank you for ur kind words xx
I guess I was lucky. I have been taking 2 Sulpha tablets in the morning and 2 at night for the last ten years. I’ve had no symptoms at all that I was aware of.
At one point, I was taking 6 per day but have stabilised on 4. The tablets have kept my RA at bay apart from 3/4 times of awful flare ups. Good luck.
Very sensible to get medical advice and stopping it. I was put on it after being first diagnosed. Side effects were minimal for me, but it didn't work on my RA. Hope you get things sorted soon.
Thank you. I hope they will sort something soon. I guess its all trial and error.
Hi
After reading I'm glad you've got some urgent advice and stopped the meds. Contact your rheumatologist first thing and get an urgent appointment. I was unable to take this medication due to the side effects, but I know it works for some. I hope you manage to get an urgent appointment tomorrow. Good luck x
Thank you. I am going to try and get them tomorrow but unfortunately they are usually only available for 2 hours on Wednesdays. I'm disappointed it didn't suit me but it made me feel worse than the actual arthritis pain. Hopefully there is something else that suits me better cos I wouldn't wanna go thru that again it was scary x
When you say they only have rheumatology appointments for two hours on a Wednesday, do you mean the nurse led clinics? Are you not able to ring up your rheumatologist's secretary for an urgent appointment this week?
I haven't been given that information altho I just said to my mum earlier I was going to ring and ask to speak with him directly. He's a lovely doctor and very easy to talk to. My nearest rheumatology clinic is an hour n a half away from me!! It's a joke over here like ur lucky to get an actual appointment once a year... worse since covid.. yes the nurses are who u usually contact and used to be Monday and Wednesday but again that's changed. I may even see my gp and get her to call him.. either way I will get sorted x
RA can cause carpal tunnel syndrome the effects often being pins n needles and tingly fingers.I got this with ra.if it doesn't persist you're ok!
Thank you. I actually have psoriatic arthritis. They seem to be very alike tho so maybe could be that. I'll not take anything until I speak to the rheumatology team. My pain was through my arms right down to my toes.. sometimes in my chest.. its not as bad now tho.
Hi,I agree with the responses here and would just like to add that when you begin to have any strange symptoms from taking any of your RA meds, stop taking immediately and seek medical advice.
This is especially important when it's a new medication for you.
The reason I'm sharing this is, I have got Seronegative RA among other conditions relating to this.
I have not managed to stabilise on any meds since diagnosis four years ago. Every new drug I start I've reacted to but on one particular occasion, I was so much worse off but kept taking out of desperation for something to work. Little did I know that my neutrophils count had dropped dangerously low to the point my consultant saw my routine blood test result and wrote to me saying I should stop taking it immediately. I did not get the letter until weeks after which fortunately I had my consultant review the day after I got the letter.
She was obviously sorry I did not get the letter in due time. I'm not sure why they didn't just ring me to say this 🤔 . They've started ring me now though if something is wrong 😊
The take away from this for me is to stop meds immediately when symptoms appear and get advice immediately.
It may not necessarily be a similar symptom to mine but it always means something is wrong and needs to be looked at.
Please put your mind at ease though, most or all side effects are reversible once you stop taking meds soon enough. (This is my understanding anyway)
Hope it's all OK for you and that you get settled on meds that works for your RA soon 🙏 😊
Thanks so much for the reply. I have stopped taking it yesterday. I was only on it a week so hopefully no damage done. I will contact the rheumatology team this week hopefully I can get them tomorrow. Oh wow u were lucky that u had the appointment next day but also yes they should have rang u to confirm u received the letter. I hope u are doing OK now x
No worries 👍 ☺ We're here to support each other here, it's comforting to share and get feedback from people on here who actually understands what you might be going through physically and mentally.
Yes, they should have rang me but lucky for me with the next day appointment after receiving the letter.
I'm taking one day at a time, the battle is real for us who have the difficult to treat type of RA. I'm hopeful though that something will finally work for me. I have my next treatment ( a JAK Inhibitor) now delivered for me to try.
Fingers crossed 🤞 this will finally work.
All the very best to you😊
It's wonderful to hear other people's experiences as I personally don't know anyone going thru this.. I hope u find something that helps.. 😁 x
So very true 👍. Most people without this condition just cannot understand us and our individual struggles. For the most part, some of us look very well physically. Most don't understand the meaning of an invisible disease. Until the disease advances without adequate treatment.Fingers crossed 🤞 for my new treatment. Thank you. I hope you get settled soon too 😊
Thank you so much 💓
Hello, I had this drug on my doctor's advice who didn't want me to go onto mtrx straight away. I have never been as ill in my life and ended up extremely suicidal. I have never ever had mental health problems before this. My rheumatologist took me straight off it and said that she has never liked the drug. Methotrexate took me a good while to get used to but it gave me my life back and I'm used to it now. It's so interesting how one man's saviour is anothers poison. My mental and physical health returned after stopping sulfasalazine and starting mtx. Beat of luck I think it's takes us all a good while to find what does and doesn't work for us x
Hi, I'm so sorry u had to go through that. Sounds scary. I was at a point last night that the pain was just unbearable I would've done anything to stop it. Thankfully I'm much better today. Still little bouts of pain but I'm up and about which I wasn't able to do all weekend. I found the methotrexate really good for my psoriasis and it was helping me but the nauseous feeling was horrible but now I'm definitely thinking it was way better compared to this. I will chat to the team and see what's the best way forward. I hope u r doing OK now 💓 xx
My daughter just reminded me, she took me to a and e when I was on it because the pain in my arm shoulder and collar bone was so horrific I thought I was having a heart attack. It was scary because heart attacks are very common in my family. Maybe it caused a big flare I really don't know it's all a fog now but it all settled on stopping it and starting methotrexate. Hope your symptoms settle lovey it's such a blooming challenge to find the right meds and dose. My nausea did settle after taking methotrexate for a long time. Initially it was like having constant morning sickness. You'll get there, I'm very well at the moment 🤞xxx
I would stop it immediately. I suspect blood tests are advisable. I took it successfully for decades and it suited me. I came off it slowly when Benepali was added as instructed, and now I no longer take it. However a good friend of mine was hospitalised and very indeed due to being on sulphasalazine for a short time. I cannot tolerate methotrexate. We are all different. Good luck.
Carharley• in reply to
I have stopped it since yesterday and feel so much better for it altho I was only on it a week my god I've never experienced anything like it.. was so scared but thankfully I'm much better today and apart from being tired and the odd wee pain I'm getting there. I will be speaking to rheumatology to see what they suggest next.. thanks for reply x
Hi I've taken double the dose for years . Never had anything like that. yellow urine yes but need to drink loads of water.
Pins and needle I would get checked out atGP or out of hours . Especially if you have pains all over !
Thank you. I did call the out of hours doctor on call and the nurse advised me to stop taking the medication. I have done now and feel 10 times better today pains not gone completely but no where near as bad. I will speak to rheumatology and as soon as I can get them and see what they advice. I'm glad it works for u and I really wanted it to work but unfortunately I don't think its for me. I'm not a big pill person anyway never was.. but I'll try anything to see if it works.
I have no option. I hate pills but now on Hydroxychloriquine. Sulfasalazine and Mehotrexate. Refuse biologics. Mostly work as I know when I forget them after a few hours. Always have an upset stomach but also now take Lansoprazole which helps! Hope you're feeling better soon!
Oh I no we just have to take what helps us. I took methotrexate before it left me nauseous but never like I was all weekend so maybe that might be the best option for me. Thank you 😊
Are you on anything to protect your stomach that should help?
No the pharmacist said these were the gastro resistant ones.
Yes I know they are. However I promise you that they still affect our stomach. That's why I was prescribed Lansoprazole which works really well. 🤞 your feeling a bit better soon .
Hi Carharley,
Sulfasalazine has many (bad) side effects but the ones you describe are really weird and they came on too fast I suspect to be due to the sulfasalazine itself. I can't help but wonder if the medication was contaminated with some other, really toxic chemical. Don't take them of course, but don't throw them into the toilet. Perhaps a laboratory can find some chemical contaminant that is causing your symptoms. And if they can find one, perhaps there is an antidote to it.
I’m on two sulphanilamide in morning & two at night & been on them for about 15 years & it takes a while to get used to them but if you are worried contact your rheumatologist specialist nurse or the rheumatologist for your peace of mind.
I am going to try speak to them today if I can get hold of them if not ill have to wait till Wednesday when they are usually only available.
I started sulfasalazine as part of triple therapy. For first 3 weeks the side effects were horrible I had severe headache. but with the passage of time the side effects are gone. I am still on Sulfasalazine.
Also if you feel its something else please call 111 or go to A&E.
A headache I could take even the feeling sick but this was pains all over so bad that I couldn't even sleep for 2 nights... I'm OK now thankfully. I did speak to a nurse in the doctor on call and he advised to stop taking them until I can speak to my rheumatology nurse who isn't available until Wednesday
Don't think be the medication i take 6a day no problem been taking years think. Your dose will be increasing
Thanks for reply. Everybody's body reacts different when it comes to medication. Might not be them but also might be so I won't be taking any chances until told otherwise. Hopefully it's not
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