Now trying sulphasalazine!
Claire38
Member Posts: 42
Just a quick update, following my rheumy appointment today.
Finally they have agreed I can try sulphazlazine while I'm still trying for a baby, as the pain has become so bad over the last few months!
So starting on a low dose and gradually increasing over the next four weeks. She said ok to still take the IM steroids as I have been, and that taking the Nabumatone when pain is really bad is not going to have a big impact on possible pregnancy.
They are not convinced the the sulpha will help, and the eventual plan will be to go on Leflunomide, (they definitely won't go down the anti-TNF/biologics route yet ) either after I have a baby, or I have to give up on the baby hope, but at this point is worth trying any thing.
She was very surprised I'm still working full time, in the job that I do (Sister/ward manager on a busy haematology ward), but I explained that's just down to determination and love of the job. At some point I know I will have to change jobs, but not just yet if I can possibly help it.
I'm so hoping the sulphasalizine will work and help with the pain!
Finally they have agreed I can try sulphazlazine while I'm still trying for a baby, as the pain has become so bad over the last few months!
So starting on a low dose and gradually increasing over the next four weeks. She said ok to still take the IM steroids as I have been, and that taking the Nabumatone when pain is really bad is not going to have a big impact on possible pregnancy.
They are not convinced the the sulpha will help, and the eventual plan will be to go on Leflunomide, (they definitely won't go down the anti-TNF/biologics route yet ) either after I have a baby, or I have to give up on the baby hope, but at this point is worth trying any thing.
She was very surprised I'm still working full time, in the job that I do (Sister/ward manager on a busy haematology ward), but I explained that's just down to determination and love of the job. At some point I know I will have to change jobs, but not just yet if I can possibly help it.
I'm so hoping the sulphasalizine will work and help with the pain!
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Comments
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Hi Claire
I hope the sulphasalazine helps it seems to help me but I'm also on methotrexate
I hope you manage to have a baby will keep my fingers crossed well would if they weren't so badly affected with arthritis
I have managed to work 30yrs as a nurse 27 of them as a staff nurse but enough was enough physically and mentally I couldn't continue as all my joints are affected so I'm now retired through ill health and as of the 1/5/13 I am now not a qualified nurse which still seems alien to me
I hope you can continue working for many years to come
Keep strong and best of luck with trying for a baby
Maria0 -
hi claire38
hope the meds go well for you.
dont forget regular blood tests.
unfortunatly sulfasalazine didnt work for me,
(lowered white blood cell count)
doctor told me to stop takeing them, only 1 month in.
been on methotrexate 14 weeks
and now added lefiunomide (taking both together)
early days yet but has took some of the swelling down on my wrists.
hope it gets better and good luck with youres,
mike26 :roll:0 -
Hi Claire
I am so glad that they have decided it's safe for you to take sulfa while you are trying for a baby.
Fingers crossed that it helps you a bit and that you concieve really quickly too.
Love
Toni xxx0 -
Hi claire I also tried sulpha after the mtx and hydroxy didnt work after having bub 2 years ago, so they offered leflu but agreed not suitable if I wanted another child, sulph made me v depressed so came off it. as I've tried 3 dmards and my das has been over 5.1 twice I am now starting biologics they consider them safe to conceive on and keep u on them until 16 weeks preg. Quite a lot of crohns patients remain on them throughout preg and no adverse effects reported yet.
Sounds like you're being unfairly asked to give up babies without proper options, I can't remember what else uve tried but don't be forced into something u don't want. The nice guidelines are clear about biologics so if u qualify insist they put u on those, they have to be prescribed with mtx so obv u can't get preg straight away but if u get on them then say u want to TTC u can withdraw mtx and continue the biologic sort of crazy but thats the system! I decided to put off TTC again after my miscarriage until the ra was controlled and that's why am going the biologic + mtx route for a few months.
u might consider moving to another rheumy if they're being difficult or even to another hospital team if necessary, I know its hassle but if u want a family its worth it.
X0 -
Thank you all.
I think NICE guidelines for PsA say you have to try 2 DMARD's before asking for funding for anti-TNF's. So I've tried the MTX, which helped but gave me intolerable side effects, and now trying the Sulphasalazine. Trouble is that although I have wide spread enthesiopathy, psoriasis with nail changes, family history etc, scans I've had 18 months ago were not helpful, and thus I don't quite meet the criteria for a PsA diagnois (they say I have psoriasis related enthesiopathy and spondylitis). I asked them about more scans on Thursday as pain much worse and swelling of my knee is much worse, but they said no point as it wouldn't change the treatment I'm on anyway. So I guess it doesn't really matter, but I wish they'd just say I have PsA, without skirting around the edges.
Anyway, at least I'm on the Sulphasalizine now, and just hoping it will work, as the pain and fatigue at the moment is pretty unbearable.0
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