Not getting on well with Sulpha

Dancing Girl
Dancing Girl Member Posts: 25
edited 29. Aug 2014, 08:36 in Living with Arthritis archive
Hi all,

Seems like I haven't posted for ages, I guess I've just been trying to cope. However, been having a rough time lately with this RA - the Leflunamide/Plaquenil combination doesn't seem to be working so good anymore.

My Rheumy suggested I add Sulpha to the mix to see if a triple therapy helps. I'm willing to try anything to give it a go :roll: BUT he's started me on 1 tab twice daily for a week then up to 2 tabs twice daily. Problem is I'm still only on 2 per day after over a month (1 am & 1 pm) - I can't bear the feeling. I feel sickly, really tired, heads aching, stomach pains and generally hungover :x very similar to the MTX side effects I had.

They've mentioned me trying this then possibly looking into going down the biologics route (is that the anti tnf meds - sorry haven't looked into/read up any of those yet).

My question is probably should I just be frank when I go back in 4 weeks and tell them I'm not willing to carry on with it. I have 2 children to look after and feeling hungover to death is not good, I can't function properly :?

Thank you for reading /listening x

Comments

  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    I've never done sulph and not had nausea problems with meth. My understanding, from what I've read on here, is that it usually calms down eventually but I take your point re looking after little ones. I didn't think that sulph caused hangover-type feelings though. It couldn't be pain relief could it? We know that does. Might a stomach-protector help?
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello
    Sorry I wont be much help, I have OA, I would ask if there is anything that can ease the side effects till your body gets used to it.
    It must be rotten taking stuff to help then being floored with the side effects..I really do wish you well and hope they can offer something that will bring you some relief especially having children to look after x
  • marrianne
    marrianne Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi Dancing/Girl .love the name ,I havent been on here for a while a few months in fact ,I started biologics 12 weeks ago ,I wanted to give it a really good try so I could come back with positives and any negatives .a fair bash at it infact ,I am R/A to and I had a dreadful time on methotrexate not been on the sulp though I read it can affect the eyes as I dont have brilliant sight and do get itchy eyes from time to time ,I wasnt keen But to get back to your awful symptoms ....PLEASE please dont keep suffering with little ones to look after it must be terrible especially the feeling sick ,I gave the methotrexate my best shot but after 6 weeks of hell .....the anti tnf and a wonderful doctor at the hospital recomended the biologic and compared to the previous stuff its truely working for me ok still have pain but I seem to cope better I am stronger no depression sleep better have got down to 2/4 codiene phophate 24 hours and have not had 1 single flare up the pain I still have is from osteo/arthritis and old dammaged joints ,I know you will listen to everyone else and decide what is best for you ,I know a lot of people do very well on the meth and other similar but I think its good to read up on line about the biologics and if thats what you want to do DONT GIVE UP persist at the hospital I think the criteria is you must have tried at least 3 of the disease modyfyers first good luck love Marrianne xx should read anti tnf nurse and hospital doctor
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I began sulph in 2002 (it was my first DMARD) but built the dose differently to you. I took one tablet daily (in the morning) for a week. The next week I took one in the morning, then one in the evening. The following week it was two in the a.m. and one in the p.m., then the fourth week it was two a.m. and p.m. I was troubled with bruising (and still am) but I'm now in my twelfth year of taking it. I also take injected meth and an anti TNF called humira. The results are less than staggering but I stagger quite nicely. :wink:

    I know that sulph does not suit some, and of course with little ones it can't be easy, so please contact your rheumatology department and seek their advice - I reckon they're your best bet. I wish you well and please let us know how you get on. DD
  • Dancing Girl
    Dancing Girl Member Posts: 25
    edited 30. Nov -1, 00:00
    Thank you for all the replies, I have continued with the Sulfa and will do so until my appointment in Sept and see what they say. I've got anti-sickness tablets now :roll:

    I was feeling really depressed with it all when I posted and hadn't slept, I guess some days you feel more down than others and when the kids play up I feel so drained with it all.

    Thankfully today is a better day and I'm feeling a bit more positive after a decent sleep and a lovely hot shower. Also, the kids are back to school Tuesday :D:D I will get more rest !!
  • marrianne
    marrianne Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Danceing Girl ,Thanks for update ,So pleased your having a much better day and the anti sickness meds help ,also you good try ant sickness bands these work a little bit you do need slim wrists for the b....ts one size ones Sept soon so fingers already crossed for a good appointment xx :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, thank you for the update and I am pleased that things are improving, albeit only a little. I admit that I tend to forget how powerful sulph can be mainly because I have had little trouble with it - shocking, I know. :oops: And yes, we are all aware that there are some days when it all becomes far too much to manage so I am pleased you posted when you did because we understand.

    A thought has just occurred to me; do you have a rheumatology helpline you can contact for direct advice? I have one and although they can take up to 48 hours to reply if they feel my reason for calling is sufficiently serious they get in touch sooner. DD

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