Sulfasalazine side effects after 5 months?

Options
Claire38
Claire38 Member Posts: 42
edited 5. Nov 2013, 08:34 in Living with Arthritis archive
I've been on Sulfasalazine for 5 months now for PsA (well for server psoriatic enthesopathy, probably PsA). Since starting it I've always has side effects of indigestion, but not much else. In the last couple of weeks I've developed bad headaches, light headedness and nausea, and also hair loss. It's helped with the pain in some of my joints, but not all. Having a bit of a flare of bad pain at the moment.

Has anyone else started having side effects this long into treatment? I would have expected them to start earlier than 5 months into treatment, but not really sure. There have been some nasty viruses going about recently which could account for the headaches and nausea etc, but i'm guessing not the hair loss?

Comments

  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
    Options
    I've never done sulph, Claire, being a 'meth' person myself. However, what you write makes perfect sense to me and I'd be thinking on the same lines as you.

    Do you have a rheumatology helpline? If so, I'd ring it. If not, try to bring forward the next rheumatology appointment. I hope you get some answers.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Options
    Hi;

    I'm new to Sulfasalazine, but I've read it can cause folate deficiency though not as severely as Methotrexate.

    That could explain the symptoms you are describing. Are you taking a supplement?

    Hope you feel better soon.
    Anna
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
    Options
    Sorry to hear you're having problems Claire :( I do find this interesting though, as I was experiencing some sulf side affects last week (nausea, sore throat) and I had thought I was over that. I have also been somewhat concerned about hair loss - it's not like its coming out in clumps, but if I run my hand through my hair, I'll come away with a dozen all the same. I've only been on sulf for 3 months (build-up month plus 2 full dose months) so I just assume I'm still in that 'window'.

    Anna - very interesting point - while I've seen many meth takers mention folic acid, it's never been mentioned in connection with sulf that I can see (not to me personally nor have I read anything in passing). I would have also thought that this would be picked up in the monthly bloods ...

    Hugs x
    Toots x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Options
    Hi;

    At least for my monthly bloods, folate levels are not checked. There is a special test that is ordered separately, but I'm in Canada so things may be done differently in the UK.

    Just google Sulfasalazine and folate or folic acid and the connection will come up. If the symptoms are troublesome then it might be worth mentioning to a doctor for their opinion.

    Good luck, feel better soon.
    Anna
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
    Options
    hi claire38
    this was my first damard , only on it for 4weeks doctor told me to stop taking it (lowered my white blood count into danger level).
    now on methotrexate & lefnioumide (inject met) and soon to start TNFs
    good luck with your meds
    mike26 :roll:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    One's body can react at any time to a med, even if you've been taking it for some time. I haven't experienced the hair loss (I bruise very easily instead) or the upset tummy etc. I was never given FA when I was only on sulph, probably because my bloods were OK-ish. Everyone is different, we all know that, so yes, if I was you I would be contacting my rheumatology unit on Monday. A sore throat would indicate a bug, but I am not a doc. Please get in touch with your hospital and let us know what they say, yes? I hope you feel better soon. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Claire38
    Claire38 Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    Thank you all. I do take 5mg of folic acid daily as on the Sulfa, but never had levels taken.

    Spoke to Rheumy, who said he "wasn't sure" all the symptoms could be down to the Sulfa, but difficult to say at the moment. Said to continue on the same dose for now and see what happens. Ideally they'd like to increase my dose as pain is bad again at the moment, but for now carry on with same dose (2 tablets twice a day).

    Still have a horrible headache, but will stick with it for now, and see how I feel in a couple of weeks.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    A headache is another common side effect, do you take your pills with or after food? Having something in your tummy for the tablets to 'land on' can make a difference in reducing side-effects. I have to have breakfast now because I take a dialy diclo in the morning, it's not a natural meal for me but now a necessary one. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Claire38
    Claire38 Member Posts: 42
    edited 30. Nov -1, 00:00
    Options
    I have morning ones with breakfast and then evening ones just before bed. Perhaps I'll try having the evening one with dinner rather than a bit later on and see if that helps at all.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Options
    Hi there,

    I still have some tummy problems with sulfasalazine after several years, and have reverted to 2 twice daily, simply can't tolerate 3! But it definitely helps to take them with or after food-I go breakfast and tea.

    Just keep asking your rheumy if you're struggling- but eventualy I guess we all have to weigh up the benefits and the side effects in terms of quality of life :cry:

    Deb xx
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Options
    Hi,

    I was put straight on sulf & mtx at the same time but the sulf made me feel exactly the same as you are describing after about 4 months. I was on a higher dose tho. My rheumy stopped it at 6 months & left me on methotrexate.

    Good luck & if it's intolerable please ring ure rheumy back & say so.

    Good luck.xxx
    Healing Hugs
    Debbie.x
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
    Options
    hi claire38
    dont forget to have regular blood tests.
    good luck with your meds.
    mike26 :roll: :?
  • Deb123
    Deb123 Member Posts: 19
    edited 30. Nov -1, 00:00
    Options
    Hi, I'm new to the forum and only recently diagnosed with inflammatory arthritis. I was put on sulphasalasine in June this year but past 2 months have had a lot of mouth ulsers and clod sores. I got in touch with the rheumy nurse who got the consultant to phone me. He has decided to stop the sulpha but not change it to anything. I was not sure if it was doing anything anyway but now 2 wks post stopping my hands are swelling and painful when I use them for everyday tasks and I'm still getting ulcers on my lips. Not quite sure what to do. I also had my blood checked to see if my Esr was maintaining after stopping only to find that my liver function Alt has gone from 16 to 91 . Am struggling with what to do and how to move forward. :?:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Options
    Hi Deb

    Why not ring the rheumy nurse- they're in the best position to advise what to do now. Hope you get some help really quickly.

    Deb x
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
    Options
    Hi Deb and a warm welcome from me too.

    Definitely ring your rheumatology nurse. It sounds as if you clearly need some proper meds but also those liver function levels need sorting. Don't be afraid of feeling like a nuisance. This is precisely what they're there for.

    Good luck and please let us know how you get on.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
    Options
    hi deb welcome from me to
    yes talk to rheumatology thay can help you.
    good luk mike26 :roll: