methotrexate plus sulfasalazine - coping strategies!

polly123
polly123 Member Posts: 96
edited 28. May 2017, 16:54 in Living with Arthritis archive
Hi everyone, been a few months since I've been here - it's been a tough winter with multiple chest infections, and a period of months without any methotrexate. Currently at 15mg which was holding well, but flaring at the moment. Went to rheumy nurse today, and rather than increasing it back up to 20mg, which seemed to trigger more chest infections, she's adding in sulfasalazine, 1 tablet a day building up to 4 a day over a month. I've had a kenalog to help things along, and looking forward to feeling better quickly. Really trying not to take any time off work, as I feel if I do I may not go back - really struggling with it!!

I'm expecting possible side effects of nausea, headaches, rash plus yellow pee :oops: - was very lucky with meth as very little side effects, a bit of mouth trouble, nothing much. Does anyone have any coping strategies possible effects, and any tactics for taking sulfa to alleviate them? Wondering if taking dose at night helps, or better in morning? Was told that if side effects too severe to drop dose down and increase more slowly.

Any advice or personal experience welcome!!

Hope those I've chatted with in the past are doing ok - a couple of weeks ago my GP gave me a course of oral steroids for a week - it's the best i've felt in years and really brought home to me how very different my life is from the norm, and from where I was in 2009 when diagnosed :-( I *know* you can't just take them willy-nilly but wish they'd find a treatment that works as well.

Thanks, Polly :-)

Comments

  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Polly, I'm on sulfasalazine but not methotrexate. I take two tablets in the morning and two in the evening. Have been taking them for 4 months now but haven't noticed any real improvements. I had a lot of sore throats initially and nausea which passed, then had daily headaches but they seem to have finally gone. I've been on steroids for a while and they were miraculous at 10-20mg a day but I've been gradually reducing them and am on 5mg now and the pain has come back with a vengeance, it does remind you how normal feels though doesn't it! And how far from normal you feel without them :( hope you get on ok with the sulfasalazine xx
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Thanks Rach,
    Happy to hear that your side effects have gone, but sorry you aren't seeing an improvement as yet. I think 3-6 months of usual, and as you probably are aware pain is not necessarily an indicator that they aren't working. Fingers crossed that they slow down the disease progress for you, and that you find some pain relief soon. I'm sure you know to keep going back to your rheumy until you feel you're as good as you can be.

    Nice to meet you, Polly x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Sulph was the first med I was given, I bruised beautifully for the first six weeks or so, yes I eventually developed the yellow urine after a month on the full dose (if you do too always explain when you have to give a sample) but apart from that I had no bother. Neither did it bother to improve the arthritis, I no longer take it and don't notice any difference to when I was.

    I have friend who has the same auto-immune as me and he is beautifully controlled on six tablets per day and has been for years - alright for some! :wink: I hope you find some benefit from it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,238
    edited 30. Nov -1, 00:00
    I've never done sulph so can't help but I do hope it works well for you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Thanks Dreamdaisy - it always amazes me that some things work beautifully for some, and not at all for others - mine has been well controlled by meth for 7 years, and now not so well. Hope you're doing ok.
    Sticky, thanks for the good wishes, hope things are well with you.
  • MissKat
    MissKat Member Posts: 124
    edited 30. Nov -1, 00:00
    Hi Polly,

    I am currently on both, long story which I won't bore you with (!).

    I had no troubles with Sulf for 18 months or so (was taking 2 tabs morning and night), gradually built up like you are doing. Recently had a flare and dose was increased to 3 tabs morn & eve. With this increase I found an array of side affects kicking in - loss of appetite, nausea, tinnitus & headaches - all worse in the evenings ☹️

    However, these have all now gone, I'm assuming it was my body getting used to the new dose and am also back on the Meth so am rattling somewhat with all the pills. Thankfully things are improving for me slowly now I'm back on the Meth.

    Yellow pee is a given I'm afraid!

    It is amazing how it works for some and not others... but I have my fingers and toes crossed for you (ouch!).

    X


    Sent from my iPhone using Tapatalk
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Thanks Miss Kitkat that's encouraging, and very happy to hear your flare is (hopefully) back under control.
    I'll let you know how I get on :-)
  • Jam84
    Jam84 Member Posts: 6
    edited 30. Nov -1, 00:00
    I take 6 Sulph a day and it does nothing as far as I can tell, although they think I may have become dependent on Steroids which i was on for a long time. Just seen someone mention bruising which I put down to the steroids but now thinking it could be the Sulph, slightest whack from my 4 year old and I bruise really bad. The pee colour yes, although not nice to hear my wife also notice under the arms of my work shirts go orange where they pick up sweat. Other than that they do very little. Currently testing to see if meth will be better
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Hi Jam, how long have you been on sulfasalazine for? I've been on it for 4 months and seen no improvement. I'm also on steroids but have reduced to 5mg now which doesn't seem to help me much. Have just gone back onto naproxen again now to see if that helps at all. Got another couple months to try sulfasalazine before trying something else. Hope you get a good result from meth
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Hi Jam,
    I have found meth great - only reason I'm not pumping it back up to 20mg is I've developed chest sensitivity after pneumonia. It worked well for me (well, as well as these things ever do) since 2009.
    I had one week of oral steroids about a month ago, and that was quite depressing as it reminded me of how well I used to be - haven't felt that good since well before my diagnosis!!

    Rach hope you see some improvement soon, I'd be a bit disheartened after 4 months with no improvement at all - are you at full dose yet??

    I'm only on day 2 :-)
  • Rach101
    Rach101 Member Posts: 165
    edited 30. Nov -1, 00:00
    Thanks polly, it is sad going on to steroids in a way, as you say it reminds you of how you used to feel.
    I've been taking 4 tablets of sulfasalazine for 3 months which is the most my rheumatologist said to take. She also said sulfasalazine takes 4-6 months to kick in tho so maybe there's still hope! Am going through a crying phase again at the mo though and struggling to stay positive tbh, it's a relief to have a long weekend off work though and I have enjoyed seeing the sunshine so am trying to count my blessings. Take care Rach xx