Should I start taking sulfasalazine? : I was diagnosed... - NRAS

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Should I start taking sulfasalazine?

I was diagnosed with rheumatoid arthurites yesterday and they have started me on sulfasalazine, I'm 26 years old and I only have pain in my wrist at the moment which is manageable, I take naproxen in the morning and I'm fine all day , should I start taking sulfasalazine or should I wait ? Please can some one help me

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I’ve taken Sulphasalazine for 6 years with no problems! It’s always scary taking a new medicine! Best of luck! It has helped me a lot!

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Thank you

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Imagine a pot of boiling water on the stove. What Naproxen does is try to stop it going nuts and boiling over by putting a lid on the pan. But under the lid the water is still bubbling away. However disease modifying drugs like sulphasalazine are trying to turn the flame down under the pan so it doesn’t bubble at all. That’s (very) roughly the difference between the drugs.

The other thing to consider is that this is a progressive disease. So unless you can calm it down it will develop. Maybe slowly, maybe fast. No-one can tell you that. But if it does develop then you risk damage to your joints and to your organs.

You can also talk also to your rheumy about how aggressive he or she things your disease is, to give you an idea of whether you can delay a while. But in general the advice is to hit this disease hard, and quickly, before it gets out of control.

It’s your choice, no one can force you to take a drug you don’t want to. But think carefully. I took Sulpha for 8 years without any problem...(apart from bright orange pee!).

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Thank you for the advice that was helpful will I have to take this every day for the rest of my life though? I hate that I've been diagnosed with it I'm so emotional about it

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Hi, it's a very emotional time when first diagnosed... I'm 7 months into it myself... it takes time to get your head around it all but it's doable. There are a lot of experienced and understanding people on here whenever you have a question or just need to vent 😂 Have a look on the NRAS site, lots of good info there and different people's stories etc. and you may find a local NRAS support group. All the best!

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I was diagnosed in1987 aged 36. 'm 68 now. Sulphasalazine was my first DMARD (disease modifying anti rheumatic drug. I've had others over the years and now take Leflunomide and MTX. Stick with NRAS (https://nras.org.uk) and this forum for the best help and advice.

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It is emotional getting a diagnosis, so you’re allowed to feel really, really upset! But my life is totally fine now. The only real difference is that I take lots of pills and injections.

There are people who after a few years have been able to slowly taper of drugs and continue in remission without drugs. The best chance of that seems to be (this is personal opinion as I’m not a doctor) those who hit the disease hard with drugs and alongside do a lot to support their bodies - exercise, healthy living, sleep, diet etc. Sadly it didn’t work for me, but that doesn’t mean it couldn’t for you. But that's for the future -concentrate on looking after yourself now.

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I was the same when I was diagnosed and I was a lot older than you are.

Once you have got over the shock you will have a clear head to decide what to do.

Helixhelix makes good points and gave a very good explanation.

So sorry you have this at such a young age but you will still be able to live your life.

Take care and good luck. Xxx

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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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Hi My123

This is a very overwhelming time and my heart goes out to you as the period from diagnosis to getting settled on treatment can be very turbulent.

I know it’s early days both for you dealing with this news but more importantly it sounds like early days for your symptoms.

In a bizarre way and you will come to understand this, the Naproxen that you don’t mind taking and that eases your symptoms could be worse for you long term than Sulfasalazine.

I’m taking a stab in the dark as not a medical professional but I imagine you have been prescribed Sulfasalazine because you are in your prime child bearing years at 26 and Methotrexate isn’t compatible with someone who might be trying to get pregnant or plans to do so presently.

I won’t go into great long explanations about the different drugs or DMARDS as they are called. Or the different types of tests, as I know you will be swamped with information.

I ignored painful fingers for years until my disease came crashing with a sledgehammer which is why it’s important to listen to your specialists, take advantage of everything offered to you and try and educate and accept support from parents, relatives and friends.

Your diagnosis is a serious one but it absolutely doesn’t mean you will not feel relatively normal again , it will be a new normal.

People on here will tell you and this is very good advice that there are thousands of RA and other autoimmune disease sufferers going about their daily life that aren’t on forums like this because they do very well.

Treat hard and treat early brings about the best outcomes.

After I ignored my symptoms and lived on over the counter pain killers I had a totally disabling flare that took 11 months to get under control.

I am back working in a very demanding physical job for the past 5 years and I thank heavens that I was diagnosed and treated hard.

I was allergic to Sulfasalazine personally but many others do very well on it.

Become your own expert, work with your GP, keep records of your blood tests and follow the brilliant advice you can get from NRAS and on here.

I wish you the very best for your future. The hardest part is accepting that this won’t go away on its own. Be kind to yourself and try not to be too fearful .

Take care.

M x

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Thank you so much for sharing your story I'm glad I'm not on my own in this and I am coming to terms with it I just feel tired all the time and cant keep my eyes open past 10 pm

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Part of me says they have diagnosed me wrong and I want to beleve that but I guess this is life and you dont know what will hit you

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Hi. I completely agree with the above and can only say that I ignored the pain I had in my elbow and a while later RD hit me like a train so due to that I would suggest early treatment now you know. I now know early diagnosis and treatment gives a much better chance of normal quality of life and control of RD. This is a time of transition for you in many ways and I hope some young people come and write on your thread and say how their life has returned to their normality. I wish you a pain free happy future.

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Hi My123

Looks like you have been giving alot of good advice allready from the members here so dont panic as you may not have to take sulfa for the rest of your life. Since April this year I have been taking 15mg methotrexate injections weekly and four sulfasazaline & 2 hydroxychloraquine daily with naproxen when I flared up. I hated the thought of all this in my system so I weaned myself of the sulfa & hydroxy completely by simply quiting alcohol & changing my diet to plant based. Within 2 months my blood results ESR & CRP markers dropped to the lowest they have been. My rheumatology nurse was shocked at first but advised me to be carefull about it and told me just to take the naproxen if I flared up again as this sort of diet change does not work for everyone but so far so good. Will I be on MTX for the rest of my life is the big question tho.

Best of luck to you.

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Hi, I always read these but never really reply but I have been in the same boat as you. The answer is yes take it. The disease can come and kick your ass when you are really not expecting it. You want to prevent damage. I started off with a mild pain like you and ignored it. Took pain killers etc. I took sulpha and was fine for a long time. The annoying thing is it can take up to three months before the drugs kick in and can make you feel a bit sick at the beginning, but after a few weeks this passes. Just push through if you can. Yes you get funny coloured pee with it and I remember being sad that I would never pee a normal colour again. Silly hey. The drugs are for life and I had a rough time remembering to take them. But rest assured on sulpa I could still do everything I did before, drink, go on holiday, I even swam in a cave in Mexico three months after being diagnosed.

It’s super stressful time and I feel for you. I would recommend getting in touch with NRAS. (National society for Rheumatoid Arthritis) They provide a whole wealth of information but equally they also have a service where someone who has been in a similar situation as you can call you and have a chat. I found this really helpful. Although my husband friends and family were great. I got to speak to someone who was diagnosed at the same age etc.

Good luck and you can always message if you need to talk.

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Thank you so much x

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I was diagnosed 5 years ago in my early 30s. I was put on sulfasalazine as I was just getting married and wanting children and sulfasalazine is safe to take before and during pregnancy. I have been fine on it and it has helped me not only with joint pain but managing the other symptoms that I didn’t necessarily at the time associate with RA such as helping with brain fog, fatigue (I still get these but not as bad) and night sweats and I only take Naproxen when needed. I also have a 2 year old and I took sulfasalazine all the way through (although only a small dose) and he is perfect and healthy. Obviously only you can decide what to do but the drugs do so much more than stop the pain.

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I agree with everything that has been said. I have taken Salazopyrin for five years with no side effects (except Orange pee ). I was told by the doctor to try not to take Naproxen as it is not good for the kidneys. I hope that you feel better soon.

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Hi I have been on sulphasalazine for 20 years on and off it has been the only one I have tolerated, when I was up to the max dose a couple of years ago they put me on benipali and I still take 1 tablet a day.

This disease has ruined many joints but I feel it would of been worse if I had not been on medication.

I also took naproxen for pain it has damaged my stomach and have to still take tablets to stop heartburn.

With my new mix of medication I have a really good life pain free 98% of the time, I enjoy days out without being wiped out and have started running.

My wrist joints are damaged so I can not bend them very well but I’m not in pain any more

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Thank you everyone for your support and advice it has been so helpful and I'm so happy that everyone on here is so understanding , I just worry because I'm also a nurse who works with poorly children so I think I would be more prone to infections , I dont want to give up my job , I love my job I just hope I can continue. I feel so young to have this condition and I've never known anyone with it. I find it hard to talk to people about it too

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There are quite a few of us on here who are either nurses or ex nurses (I'm an old ex nurse 😂) I'm sure others will have advice on this as I'm long out of the loop with nursing, but maybe it would be an idea to talk to someone (at some point) at work? occupational health? about how they can help you to continue with your work comfortably.

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Sulphasalazine only has a very mild compromising effect on the immune system, so you shouldn’t notice any difference. I never really picked up colds and infections before I got RA, and I don’t now. If you’re a nurse you probably wash your hands pretty frequently anyway, so just keep going and you’ll be fine.

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I used to work with special needs children for 20 years and coped with the various bugs and ailments they passed on to me. Just use common sense, wash your hands regularly and use hand gel frequently.

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I worked with children in nurseries etc for many years. I do believe that this has helped my immune system, as I haven’t had any bad infections etc. I take a bit longer to heal when I cut myself etc.

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Can I take omeprazole or lansoperale to protect my stomach with the sulfasalazine?

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Well I did, but more because of other drugs than the sulpha. Also ask to be prescribed enteric coated sulpha, as that helps.

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I've taken my first tablet today but I already have a sore tummy and loose stools hope it works for me.

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The first few months on it were difficult! I had a very excitable stomach, and got to the point where I couldn't eat or drink away from the house as the repercussions were a bit too dramatic for public company. But it started to wear off after a few weeks, and stopped completely after a few months. Give it a chance.....it might be fine next week.

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Yes, it's fine, I did too, but as always check with your GP.

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YesMy123,

Ask your Rheumy nurses/GP/Consiltant what the best stomach protector is. Or indeed if taking them would make sense for you.

I take Omnaprezole

Despite doing this be wary of over doing the NSAIDs.

I understand your concerns about picking up infections, I think thats a very normal reaction. I work for an airline and am in pretty close environs with often hundreds of people at a time.

Nearly a thousand people in a week sometimes, If Im doing four runs to and from America for example. People of all ages and from worldwide destinations. As a nurse you yourself will know working with the general public can be a bit grim and grubby at times!

I’m on an Anti TNF Biosimilar so my white blood cell count is kept deliberately low.

My colds are slightly more difficult to shift and I have sadly lost my sense of smell and taste for a year now which makes things a bit depressing.

Ive just had steroid injections into the joints of my feet because I get mini flares when I have a virus!

Who knew that ones feet would hurt when you have a cough? 😂

Basically My123 what Im trying to project to you is that things arent perfect but I battle on and am proud that Im holding down a job that is important to me and Im good at.

Life changed when I was diagnosed in 2015 but its still a good one!

Sending positive thoughts your way!

Mx

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I was started on Sulphasalazine when I was first diagnosed. It worked really good for awhile until my body got used to it and they had to try something else. The Naproxen is good for the pain and the inflamation but the Sulphasalazine is to stop the disease from destroying the joint so it is a necessary evil.

All the best and good luck!

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I take sulphasalazine and have been for about 3 years. I take 6 tablets a day. I would say if you can manage with naproxen don’t start taking it as they do have side effects.

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Apparently, the sooner you begin taking a DMARD (disease modifying anti-rheumatic drug) for your condition, the better in terms of destruction to your body from the disease. I started sulfa right away after diagnosis, and it was the best of the DMARDs for me. Everyone's experience with these drugs is different. I do feel tired on Sulfa, but it's worth it to me in terms of the reduced pain.

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I'm on my third week of sulfasalazine, I'm taking 3 tablets a day now , I feel like I dont need 3 tablets but with the increase regime do I need to keep upping the dose? Do we have to increase the doses ?

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Personally upping it worked out for me. I didn’t want to go past 3 per day as I felt good. However felt much better after moving onto 4.

Give it a go !

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Can sulfasalazine cause you to have yellowish eyes ?

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Hi My123,

I'm not on Sulfa myself but it does say on this Versus Arthritis link that it can stain tears and contact lenses.

versusarthritis.org/about-a...

Maybe contact your rheumy helpline if you're worried about side effects?

All the best.

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Thank you x

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