A difficult time

stlucia

Dear all,

I am sorry that I have been really quiet for a while. Times have been really difficult as my arthritis has got totally out of control and the anti tnfs are not working. As bad as that has been, in the last month or so it has got alot worse - I have stopped taking Methotrexate with a view to getting pregnant. I have been trying to prepare myself for the worst case scenario and can't seem to get my head to think about it. I could really do with some encouragement that all this is a good thing and having a baby is a positive time in life, rather than being overshadowed by this terrible disease. I am trying to stay positive but haven't told family or friends that I have stopped taking the medication so I don't have the support I need right now. Has anyone been in this situation that could talk me through it? Hope everyone else is doing ok, I'll try and do my best to catch up on other posts now to hear your news - pain dependent!

x

valval

hi i can not help you but to be honest when you hold that little one in your arms it will be worth it good luck val

stlucia

Thanks Val, that is a good picture to keep in my mind :-)

valval

try to stay positive i know how hard that can be with arther but will be well worth it some one will be along who can give you the help you need val

frogmorton

Hi Stlucia

I was lucky thsi did not happen until after l had the kids...

what l CAN say is having a child (in my case children) has beeen the best thing l ever did worth all the hard work and hassle.

They repay me now by making me laugh, helping, (sometimes) and distracting me from the not so good things with this illness.

We have had a forum baby on here and the Baby's Mum did come off meds to conceive....maybe she will happen on later and encourage you from personal experience.

I wish you luck and strength and hope that it happens very quickly for you and that you get the remission some do .

Lots of love

Toni xx

tkachev

I didn't stop taking strong meds because I hadn't at that point started mtx or humira but I had my little girl with R.A gripping my soul. I took sulfasalazine throughout and didn't go into any remission (although I was asked if I was by every doc I saw so it must be quite common) but didn't get any increase either.
I must be honest and say she wasn't planned and I was worried about all sorts as I kept taking my sulfasalazine and wasn't sure how i'd cope with the birth but for me it all went well.

That is a lovely picture Val has conjured up.

Sorry the anti tnf has not worked out. I have been really hoping for you but had noticed you were missing so assumed it hadn't worked and left you feeling very upset. I am sorry.

Best wishes
Elizabeth x

traluvie

As Val said holding the baby in your arms will be the best feeling in the world and it will be worth it..
My children are the ones that give me strentgh and keep me going..I am sure your child will too,
I think you need to talk to your friends and family and tell them how you are feeling so as they can support and help you, you won't feel so alone then, carrying it all yourself..
sending hugs..(((((X)))))

julie47

Hi Stlucia

It must be so difficult for you at the moment, all I can do is send positive vibes and hope that your body goes into remission.
I think you must tell your family that you are no longer taking your meds so that they can offer you their support.
Just keep looking ahead to that lovely little bundle of joy.
Wishing you all the best
Juliepf x

barbara12

Ho stlucia
I know how hard it is to talk to family...strange but that the way it is, so you have us lot, we are always here for you, and ready to listen.
I am 61 with OA so I havnt had to go through anything like you, but one thing I do know like Val says having a baby is the best thing in the world, I hope that on the way you can get the help you need with the pain, and I really do wish you well ...cant wait to have another forum baby..
Sending loads of hugs and love to get you through.((((())))

Ankyspond

Hi,

I have not experienced going through what you are as had my kids before being diagnosed but wanted to say hi and wish you all the luck in the world. What I can tell you is that the second you hold that tiny bundle in your arms it will be worth it, there is nothing better in e world than becoming a mum. Every day from being born is a gift and you will know it's worth it. Why jot tell family and friends so they understand why you in so much pain, support from others is so important.

Good luck. Xxx

frogmorton

A bit like taking your driving test you don't want to tell people in-case it doesn't happen.

Suggest maybe yo could think about telling one or two trusted people???

Might help a bit?

Love

Toni xx

stickywicket

I go along with everything everyone else has said about how holding your baby for the first time is a fantastic experience and even though child-bearing and child-raising can be very difficult with arthritis and demand reserves of strength you never knew you had, I regard our sons as the best thing I ever did in life and love nothing more than being with them and their families. (I had my first son when I was 9 years into RA and my second 3-4 years later.) I also have the utmost respect for those who decide not to have children because of their arthritis.

I am a little concerned, stlucia, that you say your anti-TNFs are not working, your arthritis is ‘totally out of control’ and yet you’ve stopped the methotrexate with a view to conceiving. I presume this is as a result of a consultation with your rheumatologist. If not, I really would advise it so that he/she can help you plan this pregnancy.

tkachev

Yes SW is right. You will need support. Are you worried they may try to put you off seeing as your R.A isn't yet under control?

Can I just say I kept my pregnancy quiet because I thought I was going to get told off by everybody because of my age as well as my illness. I was well past my 20 week test before anyone guessed. I really missed having support and was a times very frightened.

All the best St Lucia.

Elizabeth

skezier

Hi Stlucia

I am sorry things are rough for you at the moment.

Have you talked it through with your rumo as they might be able to find something that works but is safe for a baby.

I kinda agree with Julie as well that it would be better to tell your family and get the support better than it is.

Leaving you a ((( ))) and a hope things get easier for you. Cris x

stlucia

Thank you all so so much for your encouragement and support.

Sticky - yes my rheumatologist is involved and has been part of this decision for a while. Don't panic! The decision came down to a) stopping meds, having a family now and bash the RA on the head with Rituximab after or b) bash the RA on the head with Rituximab now and wait quite a while to have a family. Was going to be a hard decision either way I think.

Toni - yes it is JUST like taking my driving test!!! I've now told 2 friends (both who are expecting babies at the moment which is fun). Thanks for the prod in the right direction to share this with someone.

Ankyspond, Barbara, Julie and traluvie, thank you for your kind words and for posting back. It really helped so thank you.

Elizabeth - thank you for wondering how I was getting on! Unfortunately I've had two anti TNFs and neither have done very much. There is a possibility I can go on a trial but that would be after having a family.

Thanks again all
x

PS I've just spotted some more replies (THANK YOU!) I'll reply later x

tkachev

I think you should try now. For me I had an increase of R.A pain/ symptoms after my daughter was born. It is good to hear you have medical support. That is so important.

Best wishes and good luck,

Elizabeth

stlucia

Hi Elizabeth, how did you guess! I would rather get myself into the sticky situation before anyone can put their tuppence worth in! I have the support of the medical team, my husband and 2 close friends (I am sure my other friends would be extremely supportive if they knew as well!!)...so I think I am doing the right thing. I have made a countdown chart called 'Operation Up the Duff' !!! It makes me feel much more positive about the whole medication/pain thing and I can tick off the weeks in a countdown to when we can start trying...New Year is D-Day!

Cris, thanks very much for the hug - it helped lots! Hope you are doing ok today?

xx

ironic

Hi Stlucia,
Sorry I am not much use to you with advice but I just wanted to say hello and to wish you all the luck in the world.

Nice to see you anyway,
Lv, I x

skezier

Hi Stlucia,

Your welcome to the hug flower and leaving you another one and a hope. ((((( ))))) cris xx