An open window: I have just come off my Sulfasalazine... - NRAS

NRAS

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An open window

bruce18 profile image
13 Replies

I have just come off my Sulfasalazine. Do not panic I have had expert help from my GP. Yes my joints are excruciating if they are knocked and I am stiff and in pain. However I am finding that I feel so much better with a clear head, no breathlessness and mentally back to my previous self before I was diagnosed with RA.

I seem to have an open window - my only open window to try for another child. I am 35 and so this is the last chance to try. I do not want my 4 year old to grow old and alone when me and my husband has passed (morbid yes but realistic). My doctor agrees this is my final chance of carrying out our family plans.

Obviously I am concerned. I am hoping because I have a negative factor of RA that I can perservere for 3 months until the Salfasalazine is out of my system. Apparently one can still be on it but there are risks which I am certainly not interested in. If I manage to get to get pregnant again I hope my RA will go into remission.

There are alot of "if's", "but's" and "maybe's".

I am on DLA because it applies to me. I am the sort who thinks I would burn in hell if I mislead the system. I am worried about the loss of money if I am better - which is ridiculous because I want to be better but I would loose so much help it gives me like equipping the kitchen with RA friendly items, helping me run a tiny car to get my son to school because I just cannot walk very far anymore.

I kind of feel on the edge of RA. Because I am a negative factor I do have better days than others. I have the flare ups and have to walk with a stick at times or can barely hold my coffee cup.

I decided to post my thoughts because my thinking is worrying me. It is eating me up inside which is never good. I do not have a question as such, just wonder if I am the only one to be in no mans land/difficult situation.

I constantly fight against RA because of my dad - I will not put all my eggs in one basket because one day I may need them. He is out of options and in terrible pain at he age of 65 :(

I am very aware that some cannot have the luxury to come of their meds. I havent been put on anything too strong for the fact I do want another child.

Afterall of this I may be too ill to have another child - just need to get it all straight in me head.

My thoughts and waffling done. Claire

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bruce18
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13 Replies

good luck with your queat for a child, people have still taken sulfazaline and got pregnant with careful monitoring. its a difficult decision for you x

allanah profile image
allanah

Hi Claire, yes I was one of those who begged you not to stop the meds without checking! So here you are,,at the stage you wanted to be. Maybe you could try some ovulation predictors to give you more of a chance. But as I remember being stressed is not helpful to conception.

I am RA negative but this does not help my pain as I sure suffer from RA!

Also you GP sounds to be on your side and may help speed up process with ovulatory drugs , I don't know the safety of these with RA though, but just a thought.

You do seem to have a lot on your plate with your hubby worry and a little one but I really hope it happens very quickly for you, and I have read some people feel better when pregnant.

So decision made, hope it all goes well and now to can relax maybe a little and let nature take its course as they say! Xx

bruce18 profile image
bruce18 in reply to allanah

Hi Allanah, Thats a really good idea for ovulation predictors- have to pop it on my shopping list :). Its nice to know someone now with RA negative. Does the RA stay negative in us or does it move to positive? And is the joint damage minimal, or just as bad as a positive ra sufferer? Claire x

allanah profile image
allanah in reply to bruce18

Don't really know but going to the Rheumy on Friday and its on my list of questions! Will let you know xx

bruce18 profile image
bruce18 in reply to allanah

lovely that would be great x

helixhelix profile image
helixhelix in reply to allanah

See answers to reiki's question....and your sero-status can change over time but docs rarely bother to re-test it as you normally have lots of other indicators that show you really do have RA so there's not much point. So it's mainly used just as a diagnostic tool. Px

bruce18 profile image
bruce18 in reply to helixhelix

Thankyou I will have a peek

bruce18 profile image
bruce18

Yes it is. It has caused me more problems and heartache to be honest than the RA. RA doesn't care about family plans. Claire x

allanah profile image
allanah

Agreed Scouser,

i tried for a long time for my first baby but only 18 month between one and two, then 10 year for no 3, but ivf was great and i again thank the nhs for that help.

but hope your second babe will be quicker, go on ....bottle of wine and .... Tonight, well I did put flirty for the F day xxx

allanah profile image
allanah

Ah fertility laughing out lad, wot ü think Claire xxxxx

bruce18 profile image
bruce18 in reply to allanah

LOL I like the idea of the wine and I am sure hubby would be too when we are ready lol. Ive just turned pink... We are gonna give it 3 months for the sulfasalazine to leave my system. I have found all the docs and nurses have said different things,so have decided to go for the more safer choice. Hope you are both having a good evening .... with wine and hubby/partners :) xxx

allanah profile image
allanah in reply to bruce18

:) xx

Claire I think you are being very brave and doing the right thing for you from everything you say. You only get the one chance to have a family and it's incredibly special and has to be your priority for now. I really hope you are one of those who get a complete break from RA during pregnancy.

I know from reading blogs and questions on here over the past two years that you are certainly not the only one to have had this dilemma over conception versus RA meds - perhaps one of them will come on or PM you so you know you're not alone. But it might also be worth phoning the NRAS helpline to talk to someone about how you are feeling perhaps? I'm sure it will all be worthwhile when a second child comes along anyhow. Good luck! x

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