New to the forum, and new to sulphasalazine

Macbee
Macbee Member Posts: 12
edited 28. Feb 2018, 05:42 in Say Hello Archive
Hello all
I'm 46 and diagnosed 2 years ago with RA. I was fairly sore for a couple of years before that and by the time i was diagnosed was in a sorry state, all of a sudden. It's a frightening experience to suddenly find you can hardly move, but short term steroids were amazing!

Been on methotrexate and hydroxyxchloroquine for a couple of years with good effect other than occasional liver enzyme elevations. I still have some pain but NOTHING like how it was pre treatment.

Overall I'd say im doing ok. Im hoping im one of the lucky ones who is going to be able to keep a reasonable level of activity, continue to work etc, but a recent MRI showed ongoing inflammation and bone oedema, so rheumatologist has started me on a 3rd dmard, sulphasalazine.

It's been a couple of weeks, dose still increasing. Find myself now with intermittent feelings of needing to take a deeper breath (gp sees no cause for concern with that) and today, I've a pain in my mid back. So the usual list of questions go through my head....have I done anything to hurt my back?...nope. Is it my spine or my lungs thats sore?....hard to say. Is this a symptom of ra, or is this a side effect of the new meds?....eh, dunno, could be either! If I go to the gp, will they be able to see any clear cause, or will it be another "it looks fine, wait and see"?. I'm guessing the latter!

Back pain is listed as a side effect. So are lung issues. Anyone else had back pain due to starting sulphasalazine? Guess I'll take this one to the rheumatology nurse next week provided it doesn't get urgently worse meantime.

Remember when life used to be simple, before RA! 🙄 I miss that 😒
But got to keep on keeping on 🙂

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Macbee Welcome to the forum,so sorry you are in such a lot of pain it's very difficult when you have a painful condition and drugs to alleviate it to distintinquish between symptoms and side effects , i have never been on sulphazine myself but know others on the forum have. If you need to talk to someone we have a telephone number you can contact 0808 800 4050 .
    Just choose a forum to chat with others most popular forums are Living with Arthritis and Chit Chat.
    All the best Christine
  • Macbee
    Macbee Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks Christine.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I have psoriatic arthritis and used to take sulph but gave it up after a number of years as it was doing nothing.

    One of the problems we face is that as other health issues arrive we don't know what to blame; is the disease? Is it the meds? In my experience nine times out of ten it's neither, it's just more dross associated with being alive and ageing rocking up to make life more 'entertaining'. One thing I have never bothered doing is contacting my GP about possible rheumatological problems as it's not her remit: my hospital has a helpline on which messages can be left, does yours? I remember the good old days when it was actually answered by a rheumatology nurse but things have improved since then - not. If you haven't lifted, twisted, slept or moved at all awkwardly in the recent days then it may be worth getting in touch with the hospital, as these are early days with the sulph it's best to le them know that this is going on. How often are you having your bloods taken? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Macbee
    Macbee Member Posts: 12
    edited 30. Nov -1, 00:00
    Hi Dreamdaisy
    You could be right, it may be neither RA nor side effects. Getting bloods done fortnightly for now, so due to see rheum nurse next week. I'll mention the back pain.
    I've only once been to gp since diagnosis (other than getting bloods done) and I've never called the rheumatology helpline, perhaps because they said they only check the answerphone once a week! They seemed happy enough for me to see my gp re any concerns. So for anything that could be rheum related and maybe requiring attention before the week was out, like a breathing issue, I figured gp might be best first port of call. Suppose services are variable depending on area.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I was on fortnightly bloods for years, I remember the drill well. If you are seeing a rheumatology nurse soon then I hope she can provide an answer, please let us know how you get on. It's tough, isn't it? I have never been advised by rheumatology to contact my GPs surgery about any issues arising from the meds, in all matters medical we are at the mercy of the professionals' opinions and preferences. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    I saw your post earlier, felt I wanted to reply but didn't because I didn't feel I had anything to contribute. Actually I still don't but when did that ever stop me :roll:

    You seem to have your arthritic life well sussed. As you say, this pain / sudden need to breathe deeper might be meds related or related to nothing and I agree with you that the doc probably won't do anything unless (s)he has more to go on. I simply wish you better luck with the rheumatology nurse and hope the sulf (a)isn't the culprit and (b)does help. Please let us know how it goes.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Macbee
    Macbee Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks both for replying, will see how it goes on Monday. Think the headaches are taking my mind off the backache for now. Every cloud...!
    🤒🤕😬
  • Macbee
    Macbee Member Posts: 12
    edited 30. Nov -1, 00:00
    Yep, as suspected, probably not enough info to go on re potential breathing issues, which seem to have settled down. Nurse says keep to current dose of sulph for a couple of weeks, See if things settle down. If they do, could slowly increase again to target dose. If not can discuss with rheumatologist.
    It seems rheumatology is an inexact science!
    Ah well. Feeling ok for now!
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Macbee wrote:
    It seems rheumatology is an inexact science!


    Very :D

    I hope it all goes a bit more smoothly from now on.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran