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BeckyTBeckyT Posts: 7
edited 3. May 2011, 11:10 in Living with Arthritis archive
Hi everyone, my name's Becky and I am new to this forum. I have recently been diagnosed with psoriatic arthritis and I am going to see the consultant on 9th May to discuss treatment. Last time we met he said he would probably prescribe sulfasalazine. I have read up about this a bit and I feel really scared about taking it because of the possibility that the suppression of my immune system will result in me constantly being ill with stomach upsets, colds etc. I am already doing "all the right things" ie exercising, eating healthily, washing hands a lot, so I do find it a bit frustrating to be told to do those things and it will all be ok.

Does anyone have experience of taking sulfasalazine that they can share with me so I know a bit more about what I'm getting myself into?



  • williamlargswilliamlargs Posts: 143
    edited 30. Nov -1, 00:00
    hello there

    Try not to panic. I was on sulph for approx 3/4 years without any probs apart from slightly discoloured pee! :grin: I started on a high dose as in 8 tabs a day and latterly was on 2 per day. I am now on methotrexate without any probs but that story is for an other day

    Good luck
  • BeckyTBeckyT Posts: 7
    edited 30. Nov -1, 00:00
    Thanks Williamlargs! Why did you stop taking the sulf in the end?
  • Poppyg1rlPoppyg1rl Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Becky,
    Welcome to the forum, sad you had to join us in our arthritic battle though :wink: I have PA and have been on Sulfasalazine since March 2010, it hasn't caused me any problems, other than not being enough to stop the flares and joint damage, and so now I'm on methotrexate and anti TNF Humira as well. I think you can get caught up in the worry and fear of the sife effects etc of a new drug, the fact is you may suffer some, but you may not :grin: we're all different in how we tolerate and benefit from these drugs. My view is I'm in a LOT of pain if I'm off the meds, my fingers on my left hand are permanently crooked, my physio cannot straighten them. I don't want that happening to any other joint so I'm prepared to take it and maybe get the occasional cold, though not often.
    It is scary when you are first starting out and trying new drugs, I remember being terrified the first night I took methotrexate :???:
    Good Lucy with the Sulfasalazine, I hope it works wonders for you and stops your PA in it's tracks. Thinking of you, hugs xxx
    'grá agus solas'
    'Love and Light' translated from Irish. X
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Becky,

    Welcome to the forum flower, this lot are a good bunch.

    Its frightening in the beginning Becky but it get a lot easier as you go alone. I have pa and oa and was on sulfa for a good nine months but I did react to it and now I am on mtx.

    The sulfa worked better to be honest and its not too bad to take. While i was on it I had a constant cold and still have but haven't had anyones bugs at all so its not automatic.

    Initially it did give me a bit f a headache but it didn't last too long. Becky with luck you will be ok on it and it will really help you. Fingers crossed and we do half decent pocket duties if you need us for the rumo appointment. Nice to meet you Cris x
  • keith1971keith1971 Posts: 302
    edited 30. Nov -1, 00:00
    Hi Becky.....

    I'm another Psoriatic Arthritis'er!

    Have been on Sulfa for 7 weeks or so now - have noticed an improvement in my joint pain, hopefully more to come.

    I did get bad headaches and a little nausea when I first went up to the full dose (2g) but that only lasted 2 or 3 days.

    All was well until my blood test last week which show raised enzyme levels in my liver but I had another test today & literally just found out that they've reduced by half & look to be returning to normal.

    As for the immune system, my rheumatologist told me that sulfa didn't really reduce it all that much, not like methotrexate or some of the other more potent meds, so I wouldn't worry too much if I was you.

    x x

    p.s. I drink gallons of juice & water a day so my pee isn't too alarming in it's colour, sometimes a little yellowy, other times completely normal!
  • williamlargswilliamlargs Posts: 143
    edited 30. Nov -1, 00:00
    BeckyT wrote:
    Thanks Williamlargs! Why did you stop taking the sulf in the end?

    RA went into remission for a few years. Unfortunately reared its ugly head again a year ago so I am now on mtx which is doing a good job.

    Hope this helps
  • gizmobabegizmobabe Posts: 24
    edited 30. Nov -1, 00:00

    I was diagnosed 30th jan 2011, and been on sulfa since then. The first few weeks were not the best. I had the naseua ( I found Neslte chocolate milk, after taking the pills helped this), the sore throat, mouth ulcers, headaches, ears were squealing and the the bright yellow pee. however now 8 weeks down the line, the only side effects I have is the yellow pee. I thought about giving up the pills early on due to the above, however things have definitely settled down. I have not had to take any painkillers for 3 weeks. I make sure i keep mobile, otherwise i sieze up, and go to the gym 4 times a week. This was difficult to at the beginning, but even on bad days i still forced myself to do 10 mins walking on the treadmill and some light weights to improve my muscle stregnth to protect my joints. I now use a personal trainer once a week to make sure I am working correctly and to my limit without causing injury.

    sorry for the waffling but I think it is worth trying the pills, and persevering for 3 months to give them a good shot. At one point my throat was so sore i went to my GP and he said to stick with it for 3 months and if I still have the side effects then rhuemy will review it.

    good luck
  • BeckyTBeckyT Posts: 7
    edited 30. Nov -1, 00:00
    Hi everyone,

    Thanks so much for your kind words and for sharing your experiences. I do feel less worried having read your posts and I'm glad I joined the forum :-)

    I'll let you know how I get on with the rheumy on the 9th. In the meantime all the best to everyone and thanks again.

    Becky x
  • gizmobabegizmobabe Posts: 24
    edited 30. Nov -1, 00:00
    i completely freaked out when i read all the side effects. Google is not always my friend, but then I spoke to my friend who heads up a team for a pharmaceutical research company and she told me it was a good drug with the least major side effects, so that calmed me down.

  • ScarletScarlet Posts: 40
    edited 30. Nov -1, 00:00
    Hi Becky, and welcome!

    I think most people here have been on sulphasalazine at one time or another, that does seem to be the drug that most doctors reach for first! I was on it for about a year I think, it was a few years ago, but I don't remember experiencing any problems with it. I came off it because whilst it did ease my symptoms, my consultant thought my RA would be better managed by methotrexate (which it is).

    When you are in the process of being diagnosed and trying new drugs its a really scary time, and its easy to panic when you see the list of potential side effects. My advice would be: if you're going to read up about things, make sure its from trusted sources!! Theres a wealth of stuff on the internet which may or may not be factually correct. The people on here are really good to talk to as you have discovered :-)

    I've been on methotrexate (which also suppresses your immune system) for 2-3 years and I can honestly say I've only had one cold, and no other illnesses! And I am someone who probably doesn't have the healthiest of diets, and didn't take up the offer of the flu jab (not recommended, but I feel fit and healthy so I thought it would be a waste of a jab)

    Try not to worry and if you have any concerns talk to your doctor or the helpline :-) Hope it goes well with your consultant!
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Becky and welcome from me too!

    I am sorry to hear of your PA diagnosis but pleased that you will be getting started on some treatment sooner rather than later.

    As the others have said, Sulfa seems to be a commonly prescribed drug - and I think I am right in saying that it is one of the milder drugs. when I first started taking it I had very bad headaches and nausea but, once my body had got used to the full dose after a few weeks, I took it for many years with no problems at all.

    Starting any new drug IS scary Becky but you will be carefully monitored while taking it, with regular blood tests. As for being immunosuppressed, I think you are, as you say, doing all the right things. I take quite a cocktail of immunosuppressant drugs for RA and I hardly ever go down with anything (mind you I am pretty paranoid about germs and I reckon I keep the antibac wipe companies in business :lol: ).

    If you haven't already done so, you might want to look on the "publications and resources" section of this website and on the "Arthritis Research Campaign" site because I think you may find some useful information about Sulfa.

    Really good luck for your appt on 9th - and please do let us know how you get on. And in the meantime, do keep posting if you have other questions/concerns and we will do our best to advise and support you as best we can.

    Love Tilly xxx
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi and welcome!!

    I have been on sulfa for nearly 3 months now and am fine. I was really worried about taking it, but have had no side effects except the bright urine. I couldn't take methotrexate due to liver problems, and am ok so far on sulfa.

    I wish you all the best for your appt on the 9th. It is a lot to take in to start with, but the folks on here oblige with answers to questions, worries or just support.

    Take care
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I have been on sulph for years and can only report tinnitus as a side-effect. I can truthfuly say it has done little for my PA, possibly because it was far too little, far too late. The same applies to all the other drugs I have tried. I think you stand a good chance of it being beneficial if you are recently diagnosed and they are getting in early with treatment. One of the biggest problems with this dross is that we are all different in how we react to meds. I wallop down six sulph a day without a second thought now, but then I have a long, long history of pill swallowing and I never think about side effects (until now, with the prednisalone, but that is a very different story). (And a dull one to boot.)

    Make sure you are conscientious about your blood tests - we are monitored for a reason and that reason is to ensure that we do not encounter any more trouble than we need. I know that sulph does not suit everyone - in that way I have been very fortunate as I am rarely affected by side effects. I wish you well and I hope it helps. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BeckyTBeckyT Posts: 7
    edited 30. Nov -1, 00:00
    Hi everyone, just wanted to say thanks again for all your replies, I have been really comforted by hearing your experiences and while I wouldn't say I feel positive about my upcoming appointment :sad: I definitely don't feel so daunted by it now.

    I will let you all know how I get on, in the meantime take care.

    Becky xxx
  • alarkraalarkra Posts: 213
    edited 30. Nov -1, 00:00
    Hi Becky!

    Welcome to the forum!

    I've been taking Sulph for 9 months now along with a cocktail of other drugs. I did the really 'mature' thing of not reading about any of the side effects of any of the meds :roll: because I knew that they'd make me worry, so I have only read the side effects lists when I've felt under the weather to see if it's the meds which are responsible! :eek: Of course it's advisable to read all the labels before you start taking the meds but it just scares me too much so I don't unless I have to! :lol::wink:

    Try not to be too apprehensive about your appointment - I'm seeing The Man too on Monday so we are in it together in a way! I hope that you have a consultant who is sympathetic to your condition.

    Stay positive and make sure they help, no hinder you on Monday! xx
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