Sulfasalazine side effects - how long do they last?

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Joconc
Joconc Member Posts: 8
edited 24. Jan 2018, 04:05 in Living with Arthritis archive
I've been on Sulfasalazine for 3 weeks, gradually upping the dose. For the first 2 weeks I was fine, with mostly just heart burn. I then went from 2 tablets to 4 and felt just awful. So now am down to 3 tablets. I feel nauseous, head achey, tired, nasty heart burn and can't bring myself to eat much. Now I know these are somewhat expected side effects and nothing to worry about too much as they'll go as my tolerance grows but what my question is is how long should I expect these side effects to last for? I'm really having quite a miserable time and came very close to just stop taking it all together this morning. Will this go on for weeks, months? Etc.

On a side note, I've had an odd reaction that I'm unsure if I should worry about and see a doctor, the Lymph nodes in the side of my neck have swollen up. It hurt at first but now isn't as sore, though a little if I prod them... anybody else experienced this or know if this is cause for concern? I know they're involved in infections and I need to keep my eye on all that kind of business...

Thanks in advance!

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  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    I'm on sulphasalazine have been for a while, I do feel tired a lot and my appetite is up and down, don't have heartburn, nor have my lymph nodes swollen up that might be a virus you have picked up. I've learned to live with the side effects, hopefully they will settle soon for you.
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hello Joe

    If you have any symptoms which are unusual it might be wise to contact a medical professional; GP, Pharmacist, Rheumatology nurse.

    They might also be able to help you with an indication of how long you might be expected to wait for the side effects to settle.

    https://www.arthritisresearchuk.org/arthritis-information/drugs/sulfasalazine/possible-side-effects.aspx

    Best wishes

    Ellen
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    When I began sulph bruising was my given side effect, all from the waist down which looked rather odd. The increase of tablets was very gentle, one in the morning for one week, then one in the morning and one in the evening for one week, two in the morning and one in the evening for one week, then two and two then three and two until I finally reached three twice per day. The bruising stopped after six weeks or so. Does this match what you are doing?

    I'm sure you have been told not to take indigestion remedies within two hours either side of taking a dose and it is usually best to take tablets with a little food such as a dry biscuit to ease the shock to the stomach. It can be very easy to underestimate the effect of this kind of medication on the whole body, after spending much of my life taking various stuff to make life liveable I tend to forget how strong stuff can be.

    Another thought: how often are you having your bloods tested? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Joconc
    Joconc Member Posts: 8
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    When I began sulph bruising was my given side effect, all from the waist down which looked rather odd. The increase of tablets was very gentle, one in the morning for one week, then one in the morning and one in the evening for one week, two in the morning and one in the evening for one week, then two and two then three and two until I finally reached three twice per day. The bruising stopped after six weeks or so. Does this match what you are doing?

    I'm sure you have been told not to take indigestion remedies within two hours either side of taking a dose and it is usually best to take tablets with a little food such as a dry biscuit to ease the shock to the stomach. It can be very easy to underestimate the effect of this kind of medication on the whole body, after spending much of my life taking various stuff to make life liveable I tend to forget how strong stuff can be.

    Another thought: how often are you having your bloods tested? DD

    I am indeed building them up gradually and doing blood tests every 2 weeks. However I've just seen my GP... been advised to stop taking the Sulfasalazine as I probably have an infection. Quite disappointed as I suppose I'll just have to start over again. Hope these Lymph nodes now start to go down as they're really quite sore especially the one under my jaw. Infection I guess could explain why I was reacting bad to the Sulfasalazine.
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    I've been taking sulfasalazine for 5 weeks and have an almost identical experience.

    Yesterday I had symptoms of hypoglycaemia - plus sore, rock solid lymph nodes under my jaw - and I felt just awful. So awful that I completely skipped my evening dose last night - and this morning I felt normal for the first time in weeks.

    I know the heartburn, nausea and headaches are common side effects - I just wonder at what point you go to the GP because of them, or decide it's just too bad to continue?
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    Thanks Sharon - I saw my GP and am now on the mend. It's nice knowing you're looking out for people.
  • Joconc
    Joconc Member Posts: 8
    edited 30. Nov -1, 00:00
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    WhaleRoad wrote:
    I've been taking sulfasalazine for 5 weeks and have an almost identical experience.

    Yesterday I had symptoms of hypoglycaemia - plus sore, rock solid lymph nodes under my jaw - and I felt just awful. So awful that I completely skipped my evening dose last night - and this morning I felt normal for the first time in weeks.

    I know the heartburn, nausea and headaches are common side effects - I just wonder at what point you go to the GP because of them, or decide it's just too bad to continue?

    Interesting to hear that you had the same experience. Have you stopped taking them completely? I have for the time being as I'm in my crazy busy season of work and want to be at my best until after Christmas. Will probably try them again in Jan after speaking with my Rheumatologist. I wonder if I'll experience all the same problems again. 24/7 heartburn and nausea was NOT fun :(. My Lymph nodes have all gone down now by the way after about a week of coming off them.
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    Hi Joconc. I went to see my GP as I was feeling really rubbish and worried that I might be having a bad reaction. He ran my bloods again and everything looks okay. White blood cells have plummeted but still within range - I suppose that's just something to keep an eye on. I think I probably picked up a bug and that and the side effects made it feel a whole lot worse.

    It took a couple of attempts but I'm now up to full dose again without such bad side effects. I seem to feel better taking it on an empty stomach, with lots of water. Can't say I'm feeling any benefit yet though. I will persevere for now as I know the alternatives could be worse.

    I hope you have better luck in January!
  • Taratemperance
    Taratemperance Member Posts: 23
    edited 30. Nov -1, 00:00
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    Hi guys,

    I'm a bit late to this thread but I had an awful time on Sulfasalazine. Felt bit sickly on 1 tablet a day but the 2nd day of 2 a day and oh boy!!! My tongue swelled up, my throats was sore, upset stomach, faint, rapid pulse & I was literally grey! I'm naturally quite pale but I was so washed out.

    I stopped the tablets right away & about 5 days later felt human again. My Rheumatology Nurse said we will steer clear of those in future! I know we are advised that the dmard drugs have side effects but I honestly could not have coped any longer on the Sulfasalazine.

    Currently on MTX injections which have been much better for me
    Xx
  • sve170
    sve170 Member Posts: 14
    edited 30. Nov -1, 00:00
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    Is it only me but all the meds I am taking have never given me any problems.
    I feel very lucky to have never had any side effects at all. I take Naproxen, Sulfasalazine and Methotrexate, been in these for approx 10yrs with no issues whatsoever.
    I even challenged my GP many years ago as he did say the meds would have different side effects but none arrived?
    I do feel for all of you having such a hard time with the Med side effects.


    Sent from my iPhone using Tapatalk
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I'm in your camp as regards side effects, sve170, I regard myself as not having had any because the few I have experienced have not caused any further long-term physical discomforts. Cyclosporin was an interesting one, I grew a large amount of body hair all over the place but not in the usual areas. :lol: We are all different in how we react to and tolerate any medication, one man's life saver is another's nightmare.

    I think that in this day and age the first thing people do is consult the net about medications and assume everything they read is for real and will happen to them. I sometimes wonder if people can talk themselves into feeling rubbish for the mind is a powerful thing: the placebo effect is well-known and I cannot see why the reverse shouldn't apply. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    How patronising.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am not for one moment saying that they do but why shouldn't it be a possibility? No-one knows why the placebo effect works but it would seem that the act of doing something 'medical' in nature aids recovery so the reverse could be true. If you read what could happen, and interpret it as what will happen, maybe it is more likely to happen. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    Side effects from medication have been well documented since long before the internet. It's great that you don't have them, bully for you, but don't suggest that for people who do it might be the power of suggestion.
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hey, gently does it! I think there might be some kind of misunderstanding here.

    Of course it's possible to get side effects from meds. I'm sure we've all had them one way or another. In fact, DD herself has sometimes written on here about how enbrel did nasty things to her liver.

    Equally though, we can 'worry ourselves sick' literally. The two aren't mutually exclusive. It's also easy to falsely attribute problems either to the arthritis or to the meds. I'd guess we've all done that too.

    Living with arthritis is no picnic. It's difficult. And sometimes it's more difficult than others. And no-one on here necessarily knows when things are really tough for someone else and when they're just 'normally arthritic'. Let's bear with each other not throw angry words out.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Inflexible
    Inflexible Member Posts: 31
    edited 30. Nov -1, 00:00
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    WhaleRoad wrote:
    Side effects from medication have been well documented since long before the internet. It's great that you don't have them, bully for you, but don't suggest that for people who do it might be the power of suggestion.

    I have to agree, I thought this was deeply patronising as well.

    It's a difficult situation and I have to concur with SW that this no place for angry words, rather it should be somewhere where fellow-sufferers can come for some support and expect to get a sympathetic reception. All the same, I suspect that more than a few people were irritated by this.