sulphasalazine... worried about side effects

kezzad
kezzad Member Posts: 81
edited 5. Jul 2009, 16:21 in Young people's community
hi everyone, my rheumy is planning to start me on my second treatment next week and im wondering if anyone has any advice ive heard some bad things about it making you feel very ill... has anyone experienced this? i know everyone reacts differently but want to prepare myself if its going to make me feel even worse! :(

Comments

  • shay18
    shay18 Member Posts: 3
    edited 30. Nov -1, 00:00
    kezzad wrote:
    hi everyone, my rheumy is planning to start me on my second treatment next week and im wondering if anyone has any advice ive heard some bad things about it making you feel very ill... has anyone experienced this? i know everyone reacts differently but want to prepare myself if its going to make me feel even worse! :(

    Hey kezzad,

    I was recently put onto sulphasalazine, after not tollerating methotrexate at all. i was really ill on it and had to stop it completely, MY Rheumy Suggested i tried Sulphasalazine to see how i get on with it, and if it didnt tollerate it we would try something else. But so far so good, i was told it takes about 12 weeks to properly start working in your body, and its been well passed the 12 weeks, and i havent had any side effects. The only side effect i have noticed, is it does darken the colour of urine, which isnt a big deal at all, in fact i personally wouldnt call it a side effect. As you said everone reacts different to meds, but hopefully you will be just fine.

    I hope this has been usefull to you, and good luck with it all.

    all the best
  • jenni_b
    jenni_b Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi

    I know a lot of people do really very well indeed on SLZ. it controls the disease well, they start feeling the benefit in a few months.

    Im afraid it never did work on me but I dont do awfully well on the drugs in general (severe disease is such a bummer!) The most dramatic thing was to turn my wee orange.

    The thing to remember is that the SLZ and the MTX are very well tested drugs, they are known to help a lot of people and the moment something goes wrong- they can (and do) sort it out. They know all about the drug as it has been used for many yrs on patients.

    You know that you have to take something- no drugs is a no option so you couldnt be better than to go on a drug that is well tested and in regular use.

    it is hard when you start I know.

    xx
  • mylo
    mylo Member Posts: 53
    edited 30. Nov -1, 00:00
    Hi Kezzad
    I have just started sulfa as well - have been on it for three weeks now. I'm also taking MTX, since Aug 08. I'd also heard all sorts of stories about it, and felt worried, but am now feeling so much better - my knuckles and wrists are much less swollen. Also, I've had no side effects!!

    Good luck with it! Jane x
  • yesmeducky
    yesmeducky Member Posts: 50
    edited 30. Nov -1, 00:00
    kezzad wrote:
    hi everyone, my rheumy is planning to start me on my second treatment next week and im wondering if anyone has any advice ive heard some bad things about it making you feel very ill... has anyone experienced this? i know everyone reacts differently but want to prepare myself if its going to make me feel even worse! :(

    Hi Kezzad,
    Like Scottishlass, i've sneaked on here. I'm into my 8th week of the Sulfa drug and would say i've tollerated it really well. Yellow urine-not a problem. I get the slightest of headaches which soon goes. I think drinking plenty of water helps with that. The drug has only just started to kick in. There's plenty of room for improvement of symptoms yet but i feel less stiff and functioning better.

    All the best
    Heidi
  • emmarose33
    emmarose33 Member Posts: 86
    edited 30. Nov -1, 00:00
    I had no side-effects from it apart from discolouration of the urine.
    After about 2 months on it I started Hydroxychloriquine and was on that for about 2 weeks when I broke out in a rash all over my body. Drug reacrion rash or something.
    Apparently this is common to get this reactionwith sulfa but not with hydroxy. Don't know which one it was, I came off both of them. Like I said, I had started the hydroxy most recently so could well have been that.
    It wasn't itchy, just looked a bit weird and I got put on prednisolone to clear it up, which gave me 2 weeks of NO joint paon, swelling or stiffness, plus feeling a little high for that time. :D It was lovely!
    I'm weaning off the pred now though :(
    I was also worried about the side effects of sulfa as I have a fear of vomiting and heard it could make you feel sick. My consultant prescribed some anti-sickness tablets with it just in case it did make me feel sick (I would have refused to take it otherwise). Didn't need them. Everyone is different. I'm afraid it didn't really help the arthritis at all though.
  • gemmapetken
    gemmapetken Member Posts: 263
    edited 30. Nov -1, 00:00
    hey
    Ive been on sulpha since nov last year and it has been wonderful for me! it has turned my wee an orange colour but has definitly helped me!
    Gemma
  • jceaton
    jceaton Member Posts: 2
    edited 30. Nov -1, 00:00
    kezzad wrote:
    hi everyone, my rheumy is planning to start me on my second treatment next week and im wondering if anyone has any advice ive heard some bad things about it making you feel very ill... has anyone experienced this? i know everyone reacts differently but want to prepare myself if its going to make me feel even worse! :(

    Hi,

    I've been on sulfa for about 12 weeks now. I initially had 2 weeks off of work as it really made me feel ill. I perservered and I now feel like it's really helping. Apart from discoloured urine I've had no other side effects.

    J
  • janine26
    janine26 Member Posts: 1
    edited 30. Nov -1, 00:00
    my nan was in a wheelchair with arthritis and iv`e got it too fed up of people calling me an old woman for having it . :x

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