Sulfa..: Well, despite an iffy start...i did try... - NRAS

NRAS
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Sulfa..

Well, despite an iffy start...i did try sticking with this medication.

I gave it three weeks before dumping the tablets .

Dizziness, abdominal pains, confusion, tachycardia and lung issues.

If this is the best the NHS can do, stuff it. Useless.

I ll take diclofenac , i ll buy in Spain when I need them...but a treatment plan for RA that leaves you struggling and frightened isnt worth it. I wont be a guinea pig for some daft "rheumy". Sod this.

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Mmmm. DIclofenac is not a drug to rely on for long term use, especially at max dose. It has a poor record in terms of cardiac safety.

gov.uk/drug-safety-update/d...

So please don't give up on your rheumy. There are plenty of other drugs.

Do what you can to help yourself in terms of exercise, sleep, good nutrition and avoiding evil things. And try to build a relationship with your rheumy so you can discuss your concerns.

Sadly RA isn't a simple disease where is you have symptom A, you give patient drug X and everything improves/resolves in a couple of weeks. It can take a year or so to find the treatment & lifestyle that will work for you.

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Thanks...have been miserable and fed up - and scared. Never been like this before.

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We've all been there. It's s**t. I was terrified, and just wanted it all to go away. And yes, miserable and angry (why me?) and frustrated at how long everything takes. But you'll find some inner bravery, and pick yourself up and you'll get there.

Start tomorrow, phone your rheumy team and tell them that sulpha is unbearable and ask for help. It may not feel like it but they are on your side.

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Hi Theboys, i was typing this as helixhelix posted her reply so I may be repeating what’s already been said but I’ll post it anyway I’ve spent so long typing it.

It can often take more than one try at meds to get the right combination for each person, unfortunately no one med suits all. Please don’t give up and self medicate, sulfa isn’t the best the NHS has but it often is one of the first that is tried and does work for some people. There’s lots more options. Speak to your rheumatologist, they can’t help you if you don’t tell them what’s going on. They’re not treating you as a guinea pig, many of us have taken sulfa at the start of our RD, it’s been around a long time. I’m sorry it didn’t suit you or work for you.

Please don’t give up trying. Don’t risk your AID causing irreparable damage.

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Don't even think of trying to cope on Dicolfenac alone.... ...that drug has side effects all of its own & if you have been taking it with SSZ that could well be the problem.....especially the tachycardia.

SSZ It is one of the first drugs rheumatologists try.....& if it suits you it's a great lead in to other Dmards.

Walking away at this point is not the answer...& you will be the one to suffer.

Your rheumatologist is not Psychic, and he genuinely thought sulphasalazine was the right drug for you........this time he appears to have got it wrong........sadly RA is not one size fits all.

Why don't you telephone your rheumy nurse and explain how bad SSZ is making you feel ,and ask if she will ask the rheumatologist to prescribe something else. Do tell her if you have been taking Diclofenac.

We have all been on drugs that don't suit us but we haven't been silly enough to walk away & self prescribe, and most of us are still here and thriving on drugs that our rheumatologist prescribes.

So try to chill out, & get on the phone in the morning and sort things out, then you can get the right drug to suit you.

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Thanks for that. I ll bell them tomorrow.

Sorry for sounding self absorbed. I just felt fed up this eve . Thanks for the sound advice, Paul

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No problem, We all know how you are feeling ..it can take what feels like forever....but you'll get there soon..

Try to remember..,your rheumy & his team really do care....but I know it sometimes doesn't feel like it.

Let us know how you get on,

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Was taken off Diclofenac as soon as started it really within a couple of weeks, as my GP practice phoned me and said they were not allowed to prescribe it any more. This was ten years ago. Didn't ever say why, but yes I had a fast heartbeat on it so was going to say it wasn't suiting me!

Although we are not supposed to give advice on meds to take or not take, AC's post is very, very sound advice re trying to go it alone. Basically .. Don't! It's what I would have said. Nothing tends to work very quickly for RA that you are started on (exception some biologics .. Happened for me then it suddenly stopped) so it is a nervous time waiting for your med to work and it can be 2/3 months to get a med working at its best as many of us have gone so far down the slope it's hard to get back up quickly so to speak.

These slower meds which really work well are often taken for years before they lose their efficacy or something needs tweaking and often there are only very minimal side effects. Also you have to show you've taken certain RA meds for a specified time before the rheumys change you to something else unless you have severe side effects of course. (They have to justify and seek approval from NICE (national guidelines) and a health trust board.) Hope you can discuss your pain relief with your rheumy nurse or consultant and possibly physiotherapy/hydrotherapy to keep you moving? Might not be something you are interested in. Worked wonders for me but yes it's hard first being diagnosed and please keep going. Don't give up on finding a med to suit you as it will give you mobility and relief.

When first diagnosed we feel it's horrendous to take meds for life but the alternative of out of control arthritis etc is usually more scary. You may need to try a couple more meds or you may hit lucky and find the one next time and I cross (my good!) fingers you are soon on medication which relieves and controls the RA. Almost forgot .. I took Sulpha for almost ten years. Took ten weeks to take full effect.

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Paul, don't for heavens sake give in as has been said before only you(as the song goes) suffers from it. I have been taken of two ra drugs due to the fact i am going onto biologicals,so i know how it feels to be without your drugs. I have only MTX and painkillers until i get them and i can tell you being without drugs is no joke as i am in so much pain at the momen. SO make that call this morning please.xxxx

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Hope you can soon start a biologic and be in less pain Sylvi. Gentlest of hugs. xxxx

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Have no idea darling if i get the biologica at all.xx

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My goodness you should do. All you've tried and the constant pain. I do hope you are up for review very soon? 😘 xxxx . I send biologic vibes to your rheumy to let you have one, sweet Sylvi.

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I am at the hospital to see the respiratory team then i will know if i can have them and sure as hell i will upstairs into rheumy clinic and see how soon they can give me some well needed help from this agony i am in.xxxx

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I hope you fulfil the respiratory requirements dear Sylvi and can start ASAP on a biologic, as my Rituximab infusions have given me back my mobility when I doubted anything could at a very low point a few years back. I understand as you forget what it's like to be pain free and to be able to sleep well/much. Just to put one leg in front of the other and walk pain free is something we long for when we are locked in the RA, and related, that gives us such restriction. I never thought a med would work well for me again I'd got so seized up and immobile so we must never give up that hope. Hoping 2019 sees a huge turnaround for you and you feel much improved. You so deserve it. Hope you hub is doing alright. Wish I could do something to help but believe me I'm sending all the healing vibes and good wishes that are humanly possible to you. 😘 xxxx

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Thank you darling i hope so too.xxxx

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❤️😘

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I take sulfa too. I had everything you’re experiencing and talked to a pharmacist who urged me to continue as the side effects last for around six weeks. So I did what I was told (unusual!) and he was right. They cleared and now I have no side effects at all. Why not try for a little bit longer. It may work completely for you in the long run?

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I very reluctantly started this med as I could barely walk from 1 room to another and I have to take my grandson to and from school ( I don’t drive ). I’ve been on it 6 weeks now and it’s made a huge difference - I can walk! And run a bit even. I’ve been lucky I haven’t had the side effects you mentioned although I have felt very low mood which is unlike me. Like the others I’d say give it longer. Hope you feel better soon.

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I think low mood is one of the known side effects for some, my mood improved when the tablets were cut down from 6 to 4 a day, I was able to cut them down when methotrexate was added in to the mix some years back.

Next time you see your rheumy mention your mood, some low mood is tolerable especially as the pain has improved but monitor in case this becomes worse.

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Thanks. I will.

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I too had to stop sulphasalazine due to it's side effects! Am waiting to see cardiologist, pulmonologist, neurologist and dermatologist before going to see my rheumatogist just to check the problems I was having was the drug and not an underlying problem. My rheumatogist is so thorough, kind and empathetic. I wish we all had such good care. ❤❤❤

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Initially sulphasalazine worked for me, then the side effects set in, breathing difficulties and cough being quite alarming. My GP told me not only to continue but to increase the dose. I was ill and very scared as after increasing the dose ( against my better judgment) I thought I would die. I contacted rheumatology who saw me and discontinued the drug immediately due to a salicylic acid allergy. I was unmediated for 3 months whilst I recovered. I was ill, very ill RD wise during this period.

Several lessons were learned:

Always trust your own body, despite what anyone says, Dr or not. Only you know how you feel.

Never trust a GP with RD drugs, always go through rheumatology.

RD drugs are really important for control of RD.

Rheumatology care is generally very poor and moves forward at a snail's pace. Patience is necessary.

I have taken voltarol (diclofenic acid) for 25 + years with no side effects. I have been on maximum dose (150 mgs daily) for many years. Voltarol is the only NSAID drug that works well for my OA and other problems.

But, voltarol does not control RD, without proper medication your joints will deteriorate.

So , yes don't take sulphasalazine if it is making you ill. But you do need medical advice from a good rheumatologist, rare to find I'm afraid.

I wish you well.

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I’m on Diclomax so is that the same as Diclofenac? I’ve had a heart attack 9 yrs ago and some of the things I’m reading about diclofenac and heart issues is freaking me out! I was on indomethacin for years but then changed me over to Diclomax. 😲

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Errrr, yes. Don't freak out, as risks are still pretty small but it's more that there is a risk. Go and talk to your doctor.

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Don't panic. It's not as regularly prescribed nowadays for RD but whoever first prescribed it may have weighed up the pro's & con's & considered it the better NSAID for you at that time. That said there are alternatives in the same group (COX-2) that can be prescribed if you want to discuss it with your GP or Rheumy. Diclofenac is a good NSAID, worked for me when I had an acute lung problem where my normal etoricoxib (also a COX-2) didn't. I keep a small amount in reserve if it happens again to cover me for getting to Urgent Care.

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3 weeks in nothing in the RA world... I had side effects for at least 2 months. You cant just stop. Insist on seeing your rheumy because if you just stop, then you are back to square one. All RA drugs build up.

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