Sulfasalazine, headaches and fatigue

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barbara01
barbara01 Member Posts: 85
edited 6. Feb 2013, 09:25 in Living with Arthritis archive
Hi All

Haven't posted in a while but always check in to see what your all up to. Started Sulfa 2 weeks ago, now on 2 tablets a day but am suffering from a continuous headache which in turn is making my vision seem a bit fuzzy (like a migraine does) and this in turn is making me absolutely exhausted. Has any one else experienced any of this and did it pass, and if so how long before you could cope. Need this to work have already tried MTX which I couldn't tolerate, hydroxy didn't work and so am pining all my hopes on this. Have to say pain seems not too bad but just cant cope with this everyday headache. Feel like spending all day in bed under the duvet!!! Help and advise would be appreciated.

Hope your all having a pain free day and enjoying the sunshine xx

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  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
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    Hi
    i got this when i started this. It lasted a while a then it eased off. I got anaemic when i started this too so it may be this. I am guessing you are going to be having your bloodes checked regularly?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    My main trouble when I started sulph was bruising. The problem with these drugs is that they vary so widely in their side-effects. They all suposedly take time to kick in, so if you can, hang on in there. Your body has to adjust and it might well work. I have been on sulph since 2002, amd I have no problems now (it's the steroids that cause the bruising now!) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Barbara,

    Good to see you again but sorry your having the headaches.I was on sulfa for a few months (9 I think) an the headaches did go to low grade after a few weeks so it might stop soon. I do hope it does. ((( ))) Cris x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hi Barbara, sorry you are feeling so rotten.
    When I started Sulfa I nearly gave up because of the shocking headaches and the nausea which went with them. But after a fairly short time on the full dose (I built up over a few weeks) the headaches and nausea disappeared and I took them for about 10 years after that with no problems at all. So hang in there if you can Barbara - because if they work for you, it will be worth it! Also bear in mind that they can take a good while to kick in properly and it's hard to feel as bad as you do without any real signs of improvement. Thinking of you. Love Tilly x
  • barbara01
    barbara01 Member Posts: 85
    edited 30. Nov -1, 00:00
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    Hi all thank for your replies ... Didn't take last nights dose as just couldn't face it ... head was killing me .... slept ok after taking large dose of co codamol. This morning head was aching before I even opened my eyes and feeling sick too... haven't managed to get up yet ., luckily it's my day off so having a pj morning. Wasn't going to take this mornings dose but after your reply Tilly will try and have some breakfast and take dreaded pill (only on 2 a day how am I ever going to get up to 4). Off to docs later for a bit af advice!!!
    B xx
  • barbara01
    barbara01 Member Posts: 85
    edited 30. Nov -1, 00:00
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    Hi all ...back from the drs she spoke to rheumy nurse on phone while I was there and they have said cut back to one tab per day and take paracetamol and codeine for the headaches... If that doesn't work I'm to stop taking it as seeing consultant in 3 weeks. Think he wants me to try anti tnf next but feel very scared of the thought if it ..... Heard stories about TB and MS ..,,any one know anything about this?
    B xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    They just love to terrify. You get a chance at an anti TNF round here when all else has failed - how many other meds have you tried? They never tell you that injected meth is chemotherapy 'cos so many people would freak out! Yes it is chemo, but at massively reduced doses for us. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • abbie41
    abbie41 Member Posts: 55
    edited 30. Nov -1, 00:00
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    Hi Barbara - sorry to hear about those headaches - sounds awful. Hopefully they will ease up now.
    I dont know much about injections some other people on here may. I did get told that I should ask for infliximab if the Dmards dont work as they are brilliant apparently and cost a fortune, which is why they are not the first thing you get when you are diagnosed. I got told this by a lady who took my blood in the hospital - she whispered it to me and wrote it on a piece of card - I hope what she says is true and it helps you alot x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Infliximab is one of the anti-TNF treatments - it's based on mouse proteins, anything ending in 'mab' means mabine, based on mouse. They are very expensive drugs which is why you have to do the cheaper ones first. Then your consultant has to fight for funding. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hi again Barbara
    Glad you got some advice from the rheumatology nurse. I do understand completely and I know how bad the headache and nausea can be but I can only reiterate that my body seemed to stop fighting it after (if I remember rightly) a fairly short time on the full dose.
    I know that the idea of Anti-Tnfs - Infliximab, Adalimumab (Humira), Etanercept (Enbrel) - is scary and, as with all these arthritis meds, the side effects leaflets make frightening reading. But many of us on here have been on one or more Anti-Tnfs and we have all had different experiences – for some they work brilliantly, for others they don’t work as well (or at all). If I were you, I would try to read up about Anti-Tnfs before your appointment, so you can go prepared with a list of questions for the consultant. There are some detailed drug information sheets on the Arthritis Research Campaign website which might be helpful. http://www.arthritisresearchuk.org/arthritis_information/arthritis_drugs__medication.aspx
    Good luck – and if you have any specific questions, please do ask. There is bound to be someone who can advise!
    Love Tilly xx
  • wibberley
    wibberley Member Posts: 421
    edited 30. Nov -1, 00:00
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    Hi Barbara, sorry to hear you're suffering with the dreaded headaches.

    I had them, and the nausea, pretty regularly when I first started on the sulpha but they subsided as my body got used to it. I then had a shocking headache a few weeks ago (which I posted on here about) so, like you, decided to miss a dose. For me, that did the trick.

    I hope cutting back a bit does the trick for you - sulpha has been great for me and when I had that bad headache recently, I really worried that I would have to stop taking it.

    Lois x
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
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    just wanted to say im having awful headaches since starting sulfasal last week. absolutely awful, havnt been able to do anything. nothing helps, painkillers dont help, sleep doesnt help. cant sleep. keep hoping itl get better but it isnt. it also causes constipation too :(
  • Jo90
    Jo90 Member Posts: 68
    edited 30. Nov -1, 00:00
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    Hi Lizzy, sounds hard going and a similar set of side effects as barbara. I guess the general guidance is that it is a med that is worth persevering with for some, who then find it very effective. I know when I was prescribed it, the rheumy nurses advised that it would take some time adjusting to it.
    Have you contacted your rheumy team to get some advice from them ? They may be able to suggest something to help.

    Jo
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
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    i never got given a rheummy nurse and i dont go to rheumm now, its my GI doc. iv decreased it but cant seem what else i can do.
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