What is it like on Sulfasalazine

ian3900
ian3900 Member Posts: 12
edited 22. Apr 2016, 11:26 in Living with Arthritis archive
Hi I am new to this and have just been diagnosed with PsA which is currently has negligible impact on me. (Niggles in fingers and toes). The rheumatician is telling me I have to go on Sulfasalazine which sounds like an evil substance. (I drink a bit too much for Methotrexate and the stress of all this means that now is hardly the time to give up).

It sounds like Sulfa will be very life inhibiting, and I am frankly wondering if it is worth the candle.

I have great job in London which I can't do if I am at home with headaches, nausea and vomiting. Most of my enjoyments are outdoors - in the sun- which is apparently a problem, blood tests and doctors are going to turn work upside down and I can't abide the idea of orange stained clothing and the rest of it. And then there are all those stories online of how bad it is, of how ineffective it is, or both.

Is it really like this? Or are there those of you out there for who it has worked without negative impact?

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello

    Welcome to the forum, I am sure you will find support, advice, light relief and friendship.

    I am of the moderation team, we all have one or more arthritis "hangers on" or look after family members with the same.

    If you need help with the technicalities of the forum just get in touch via a personal message

    Best wishes
    Moderator Chris
  • stickywicket
    stickywicket Member Posts: 27,224
    edited 30. Nov -1, 00:00
    Hi there, Ian, and welcome to the forum.

    This is all clearly very new to you, a bit scary and somewhat bewildering. Why must your life change so dramatically when you merely have 'niggles in fingers and toes'? The meds sound 'evil' and you're wondering if it really has to be like this.

    Well, I think you made a good move coming on here rather than just reading online stories about sulf. Few people bother going online to say how wonderful a med is. They're far more likely to complain about stuff.

    So, do you have to do this and risk all those potentially nasty side effects? No, you don't. You can let things drift and hope that your PsA is a 'slow burner' and you can carry on as before for as long as possible. But – a big but – untreated, it will get worse much more quickly and interfere with your life much more. It's a fact that the sooner DMARDS are started the better the outlook.

    The blood tests are essential as they show up any problems before they can take hold and become major. The sun doesn't have to be a big problem – long sleeves and trousers rather than short, a good lathering with Factor 50 and still stay in the shade as much as possible. (The golfer Phil Mickleson manages OK with his PsA.)

    I admit, I've never done sulf as meth works fine for me. Yes, I probably drink more than I should on it at times but I didn't at all while getting established on it and, since then, have discovered I seem to have inherited a wonderful liver – my ALT readings rarely make double figures.

    I guess what I'm saying is that all side effects are merely potential whereas the equally nasty effects of the disease itself are inevitable unless you take the meds. For me it's a no-brainer but I can understand that it takes some time to get the head round it. Good luck!
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi,

    I think the thing to remember here is that any side effects are possible, rather than probable. Many people have no side effects at all.

    As SW points out, taking no drugs means you risk nasty joint damage as your PsA attacks your joints.

    I was on sulfasalazine when first diagnosed years ago, and the only side effect I had was orange coloured urine. I had none of the others you mention. It didn`t do a fantastic job of controlling the RA, but my RA was very aggressive, and nowadays I think I would have been put on a combination of DMARDs, to better combat the RA.

    Good luck.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    My mate N has PsA to a similar level that you have related and sulphasalazine controls him superbly with no impact on his day-to-day life whatsoever. I too have PsA but very differently, so my experience is not relevant. I've been on sulph since 2002 with no trouble whatsoever.

    The whole thing about these meds is to do with slowing the progress of the disease; believe you me that is vital. DD
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Ian, Welcome to the forum, I've been on Sulphasalazine a while now but don't have PsA but do suffer with RA and Osteoporosis. I do take a crazy amount of meds (I should rattle when I walk!) and I couldn't tell you which side effect is from which medication because several cause headaches and vomiting. I wouldn't say my life has changed due to Sulfasalazine I still do things I want to and things I can't do I just find a way of doing it differently.
  • Jfrosty
    Jfrosty Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Ian,

    I'm also about to start sulfasalazine, I'll keep you updated on any side effects I get. But like you, I'm also apprehensive about it all. I'm just hoping that generally I'm quite a well person, apart from recently I walk like one leg is longer than the other. But I'm not usually prone to Colds etc so I'm planning on just trying to eat healthy and try not to get stressed out by it all. We'll see how that one goes though.

    James
  • ian3900
    ian3900 Member Posts: 12
    edited 30. Nov -1, 00:00
    Many thanks James this is very helpful to know. I am in poor place with this. I have spent hours trying to find out the likely incidence of the side effects of the drug but to no avail. Without this i can't possibly asses the likely impact on my life.

    I am a business adviser. When I advise my clients - for example on buying a business- I help them weigh up the benefits and threats, help them understand the risks, backed up with statistics, evidence and probabilities, and help them come to a balanced decision as to what they are going to do.

    Unfortunately the medical way of doing things seems to be to tell you what to do, to refuse to produce any evidence as to the likely outcomes, and to threaten you with what will happen if you do not comply.

    It is all very well to dismiss side effects as an inconvenience. I work in London, an hours commute plus a good walk. I can't do it if I am nauseous and vomiting. If I can't work I don't get paid and if I don't get paid I can't pay the mortgage.

    Telling me to keep away with people who are ill, to avoid getting infections with a lowered immune system, is not much use when you get on a train of 1000 people twice a day.

    My interests are all outdoors. I love cricket, gardening, holidays in the sun. I suffer from SAD in winter and live for the summer and the sun. Telling me now, just as we get to Spring, that I can't be in the sun, is like locking me in a cell and throwing the keys away.

    Where I am at the moment is that going on the drugs has the potential to wreck my life, work and leisure. Now. And all for a sore finger.

    I had depression 20 years ago and have had no problems since I beat it. I can feel the prospect of going on these drugs for the rest of my life bringing it back.

    I am seeing the consultant on Saturday and likely to tell him that I am not going to do it for now. Having been there before, I'd rather have arthritis than depression.

    I've also booked some counselling.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    One of the biggest problems with medication is that one man's saviour med is another's poison but you won't know which applies to you until you try and of course you won't find out on the net. There are around ten million arthritics in the UK (the majority with OA) but why would you know that? Counselling is a very good idea but it won't stop the progression of the disease. Any form of arthritis is degenerative and progressive but I guess you have the 'misfortune' to be generally physically healthy. This shouldn't be happening to you, should it? Sadly, however, it seems it is and that is truly dreadful.

    I understand that this must be a huge shock to you, and it is a great deal to comprehend, but please think long and hard about refusing to try an entry-level DMARD. My mate Nige leads a perfectly normal life on six tablets per day, he has blood tests once every six months and continues his very physical work as a builder and kitchen fitter. Like you he received an early diagnosis and sulph has made all the difference in that he has very little further degeneration of his joints, he is now ten years in and no worse than when he was diagnosed.

    Me? I began in 1997 with a bady swollen left knee, didn't start sulph until 2002 and now have around forty affected joints, some with both PsA and OA. I have little doubt that my outcome would be somewhat better if I had started the meds far earlier. As a result I am far more medication than the sulph.

    I wish you well. DD
  • ian3900
    ian3900 Member Posts: 12
    edited 30. Nov -1, 00:00
    Another night of surfing. Just found this http://rheumatology.org.au/community/documents/sulfasalazine130508.pdf
    from the Australians. No idea why the Ozzies can produce the percentages when we cannot. It is mildly reassuring.

    My problem is that I value wellbeing as well as health, and I am not necessarily prepared to sacrifice the former to the latter.
    The minute the consultant mentioned the word orange I knew their would be a problem. I find the whole idea deeply disgusting, and I don't want to spend the next xx years disgusted with myself and in the shade.

    Counselling tomorrow.

    Sleeping would be nice.

    Ian
  • stickywicket
    stickywicket Member Posts: 27,224
    edited 30. Nov -1, 00:00
    I've followed the link. I'm just wondering what is the reassuring bit. That it works well for 50%-60% of people?

    May I suggest that, in addition to your counsellor, you give our lovely Helpline people a ring? You'd be able to talk your fears over with people who understand the arthritis side of things. Or, is your counsellor working with your rheumatologist?

    Please try to remember that many people get no side effects at all, only relief.
  • ian3900
    ian3900 Member Posts: 12
    edited 30. Nov -1, 00:00
    Thank you stickywicket I appreciate your comments (and I appreciate the name - I am a cricket lover and have been a member of Essex since I was a child, now 52.. I was working in Brighton today, wonderful place, and would have loved to have been up the road watching Essex v Sussex at Hove. Sadly we drew. Of course if I am on this horrible drug going to watch cricket in the sun is finished),

    I have spoken to the helpline already and, although understanding and listening, they weren't much help. They referred to me to the Arthritis Research Trust for information who I contacted. They (i.e. the ART) got all high and mighty with me saying that they couldn't give me medical advice- which was not what I was looking for, I just wanted information. Which they said they had not got.

    The bottom line is this (or something like it). If it is 30% certain that on Sulfasalazine I'll be off work off work for three days in the next three months and 75% certain that it will improve my quality of life in 10 years time, then I'd probably do it (or similar).

    If its 50% certain that I will be off for work for three months constantly (and lose my job and home), and 50% certain that it will work, then either I won't do it, or at least I can plan to be in a position that I can do it.

    The fact that no-one can tell me probabilities here in Britain in the 21st century is astonishing, and that is what is causing the in controllable stress.

    I hope someone understands.

    PS I thought I was going to spend the spring and summer following cricket, not on this website :| :shock: :(:(:(
  • ian3900
    ian3900 Member Posts: 12
    edited 30. Nov -1, 00:00
    DD thank you for your very supporting comments. I hope you mind me asking, I really do. Why did you delay five years? Please don't reply if its a problem. Thanks. Ian
  • ian3900
    ian3900 Member Posts: 12
    edited 30. Nov -1, 00:00
    Meant DON'T mind, sorry
  • stickywicket
    stickywicket Member Posts: 27,224
    edited 30. Nov -1, 00:00
    Let's start with the important stuff – cricket :bouncing-ball: I take methotrexate, not sulf, but the 'sun rules' are the same. These days I watch virtually all my cricket in Los Angeles where my son lives and still plays. I also watch my grandson play baseball. The temperatures, when we go, in spring, are always in the low 20s. It is almost invariably sunny. I slap on the factor 50, big shades and a cap. I wear long, thin cotton sleeves on the hottest days. I ensure I sit in the shade. It's easy. Nothing will part me from cricket.

    As for the meds – you want percentages, hard facts, maybe some kind of mathematical formula with which you can take informed decisions. Alas, there are none. Learning to live with uncertainty is one of the hardest parts of this disease. And, if you have suffered previously, from depression, I can understand your reluctance to take any steps that might open the door to it again. OK, I'm going to be brutally honest in the next paragraph so here's due warning. Skip it if you prefer.....

    …...You write “I'd rather have arthritis than depression.” What makes you think they are mutually exclusive? A huge percentage of people with arthritis take anti-depressants. It can be a very depressing disease. You also write “I value wellbeing as well as health, and I am not necessarily prepared to sacrifice the former to the latter.” I can see where you're coming from but, really, it just doesn't work like that. As arthritis gets worse we require a huge amount of determination and effort to maintain our 'wellbeing'. I was diagnosed at 15. I thought I had chilblains on my fingers. There were no DMARDS then. As a result I now have joint deformities everywhere, artificial hips and knees. Of course I now take my DMARDS and what a difference they have made! But, to some extent, it was too little, too late for me. You have a choice. I really can't urge you enough to take it.

    OK, it's safe to read on :wink: Instead of fretting about how days off might impact your work, why not look up your rights as an employee and what allowances your boss must make for you? Try here for a start http://www.nhs.uk/Livewell/workplacehealth/Documents/ChronicConds_Employees_Factsheet_A4.pdf

    There's no doubt about it. A diagnosis of arthritis is nasty. But we retain some control over it. Don't hand over control to the disease and give it free rein.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hi Ian

    I understand from speed reading the above that you are apprehensive regarding the side effects of sulfa on your body and how that may affect your work etc.

    I'm on sulfa along with meth and an anti-tnf so a lot more immune suppressed than taking one of those alone. I live with two adorable but germ sharing toddlers who are obviously prone to more colds and infections than the average adult. We are coming to the end of winter. I have had no sore throats, coughs, colds etc. Nothing, not one. I'm careful with hand washing and surface cleaning but sometimes there is no avoiding contact with the snot, sick and whatever else is thrown at me. I just make sure I wash my hands thoroughly afterwards and my girls know that tissues go in the bin asap.

    I've had no days off work due to an illness in the last 12 months. I ahve taken three days off in twelve due to arthritis but I'm in the midst of changing an anti-tnf so taht should end that worry. I tend to use sun cream because I'm rather pale skinned anyway so sun precautions aren't anything new or significant to deal with. My wee is slightly more orangy than when I'm not on sulphasalazine. I'm only one person so I can't be added up as a statistic but my incidental evidence hopefully shows that the reality is a lot less frightening than the paperwork. I do think that not medicating against arthritis will lead to a much poorer quality of life than medicating it. I did trial for three months no medication when I was removing drugs from my system in order to get pregnant. The severity of those three months reminds me why I will never attempt it again. Maybe for now your symptoms aren't so severe you feel you need treatment which is a good thing but there is no guarantee taht they will stay manageable and in my experience, once arthritis does become more severe it does so at speed. If you are then waiting to get into the DMARD treatment cycle you will most likely be given steriods in one form or another until they have got the systems in place to provide the DMARD. Now there's a drug to be frightened of. Steroids seem innocent and their side effects read much easier than DMARDs but I've had so many side effects from them compared to DMARDs. I do understand that the meds add yet another layer of frightening things to consider but I am a much more reliable and able employee when I'm adequately medicated than I am when arthritis is running free reign around my system and that sounds to be a significant consideration for you.
    LV
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I forgot to say, I LOVE being outside, I was a rock climber and all my chosen activities are outside rather than inside. I spent all yesterday outside on the side of a hill. I put sun cream on, I didn't not go out. I do know that some people avoid the sun but I have managed to go out in it and putting on sun cream isn't exactly life changing. I've never had orange sweat and I've never had orange tears (which to be honest might be quite cool as a novelty). Sulfasalazine isn't life changing, uncontrolled arthritis really can be life changing.

    It's a lot to take in all at once - a condition which can cause havoc and medication which seems extreme. I do understand how frightening and unreasonable it can all seem but I'm still very happy with my life despite the presence of arthritis and drugs. I still ahve a fulfilling and hard working career and I still do the things I want to do. I have made some changes - I no longer climb - but I have also found some new things to do which I enjoy more than climbing. I wish I could calm your fears because they can't be making all this any easier to deal with.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I didn't delay, far from it. I hope you are ready for this - get yourself a cuppa!

    Unlike you I have lived my life with the constant presence of doctors and specialists because I was born with mild eczema, then aged 18 months went on to do it 'properly' :wink: Chronic asthma rocked up when I was 7 and this all happened in the years before steroid creams and inhalers were invented. I learned to have faith and trust my GPs and, usually, they were good.

    Then in late 1997 I met one who wasn't up to the mark. My left knee began swelling in the April and around November I went to see my then GP. She assured me it would sort itself out. I returned around a year later (with a larger knee) and asked if she could draw off the extra fluid: she assured me that wasn't necessary and it would sort itself out. The same again happened in 1999. I was used to believing docs so, sadly, believed her. What a silly mare I was but I was used to believing doctors. They had helped me before and would do again, or so I thought.

    By 2000 my left knee was around 23 inches in circumference so I went to to see the physios at our local footy team, as friends said if anyone knew about knees they would. They didin't know about a knee like mine but took photos and referred me to orthopaedics. I lost another year being bounced gently between orthopaedics and rheumatology (nobody wanted me) but in 2002 orthopaedics decided to take some action (by then my knee was 27" in circumference, all above the knee cap and to this day my op is in surgical textbooks as a classic example of how things should never be).

    Not once did I suspect any form of arthritis because I knew nothing about it. I reckon my then GP was with me in her ignorance. Sinced 2006 my current GPs have been far better informed and more knowledgeable about it but are happy to leave it to my rheumatologist whilst they deal with my OA. My PsA did not start as it should which wasn't helpful.

    I have to go and dish up, so farewell for now. I appreciate that this must be so frightening for you whereas for me it's more of the same. Good health: a blessing and curse all in one, a blessing because it must be lovely but a curse because it doesn't prepare one for any setback, let alone a long-term one. DD
  • Frumpyshoes
    Frumpyshoes Member Posts: 12
    edited 30. Nov -1, 00:00
    Ian how,hilarious reading your posts. I'm just 51 and didn't think I'd be spending my 50's on sites like this looking for inspiration ....

    I was diagnosed with psa 18 months ago and put on mtx. I have to admit I had to force the tablets down as the thought of a life without alcohol was just awful. Although I was very careful with cutting down drinking for the first 6 months, I have slipped and now carry on just as before. As my rheumy said yesterday my liver handles mtx beautifully. I'm now on humira as well as apparently my immune system just will not give up the ghost. Like you I started with very few symptoms - a painful wrist the odd swollen finger but whilst trialling one after another unsuccessful drug, psa has definitely ramped up. Why rush into anything? Well mainly cos you have to jump through so many hoops to get drugs that are more likely to help - so the sooner you start the better.
    Nobody advised me of anything about being in the sun and I golf (walking) 5 times a week in 30+ degrees with just a hint of sunscreen and a golf hat! Probably not recommended...

    Every week I remind myself it is my choice to take these drugs. You could always try and then just stop if you find they don't agree with you. I hope you do consider giving them a go