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Date: 17.09.2011
From: davina

Subject: what would you do?

hi hope all are well

i am a mum of 1 boy his now 2, i got ill during my pregnancy and found out i have RA june 2010.
my Ra is still not controlled i'm on methotrexate, plaquenil, enbrel, pred 2.5, diclofenic and pain killers as need (every day)

i want another baby but not sure if to wait or not, i was assessed y a new rhemy last month and seeing him again on the 29th sep. he said he may change my meds as they are not very effective.

so my decision is do i continue on with the new meds and wait to find a suitable one that works for no matter how long it takes then think about trying for a baby or do i give up and stop my meds for 3 months before i can conceive and just try to find one after i have had a baby.

please could you tell me what you would do to help me decide, ask any questions you feel.
sorry to ask you all but i know you are the only people that can give me a honest answer understanding my health and problems, feelings ect...

thanks
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Date: 17.09.2011
From: bsk

Subject: Re: what would you do?

hi Davina, have you discussed this with new rhuemy? They might be able to put together a plan with you. Also, it might be some of the newer drugs you can conceive with and others you can't so you need to find that out too. Who knows - you might be able to do both!

You could have the baby and then concentrate on the meds once your family is complete. It could be that you have to try more than one drug to get one that suits you. The other thing to take into account is to find out whether, with the new drugs, you can stop and start. I was told by my consultant that with my biological drug that I am not allowed by the health authority to be prescribed it again if I stop. I don't know whether pregnancy would change that but you need to know all this kind of stuff before you make a decision.
I'll be interested to hear what the others say!
Best of luck.
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Date: 18.09.2011
From: marlene7

Subject: Re: what would you do?

hi Davina, this is a tough one!! I go along with bsk you need to consult with your rhumy team. Weigh all the odds up then make a decision. Whatever you decide to do we will all be here for you!!! Will you have a network of family and friends to help out, this would be real good. Davina this must be your choice go with your head and your heart. You will do whatever is right for you and your little family. Sending love and best wishes and hope you make your choice real soo. Take Care X
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Date: 19.09.2011
From: louloubelle

Subject: Re: what would you do?

Hi Davina

I was on enbrel when my partner and I decided to try for a baby. I discussed it with my rheumy and he put me on sulfasalazine as that is safe to use during pregnancy. He was happoy for me to continue on enbrel until i fell pregnant. The guidelines say you should come off enbrel before conception but my rheumy has done a ton of research and couldn't see it being a problem.

I fell pregnant in January 2010 so stopped the enbrel as soon as I had a positive pregnancy test. Unfortunately, for me, the sulfa didn't work and the arther was the worst it's ever been for the first 5 months of pregnancy. I took paracetamol and had frequent steroid injections to keep me going.

Oscar was born fit and healthy in September 2010. I am now back on enbrel and as fit as a fiddle.

I'm sorry to hear you haven't had any luck with finding a suitable medication yet.

I have to say, despite the pain and discomfort during pregnancy it was totally worth it. I would do it all again and, if it wasn't for the fact that I'm on medication for breast cancer and am not allowed to conceive, I'd have been pregnant again and putting up with the arther!!!

You do have to think of what's best for you but in my opinion if you wait until you find the right med, you'd then have to stop it in order to conceive and you're back to square one. If it were me, I'd try and have all of the kids I'd planned to have close together to "get it out of the way" so-to-speak and then concentrate on controlling the arther.

Al lot of people find pregnancy helps to relieve the arther too!

On the negative side, you have to look after your children while the arther is not under control and, as I know, that is seriously hard!!!

Good luck Davina and I hope you have the support at home to make this decision

Lou x
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Date: 19.09.2011
From: davina

Subject: Re: what would you do?

thank you all for your advice, i am yet to take to my rheumy but 1st me and mark need to agree, he thinks i should get better 1st and i don't, even though he knows it will be back to this or worse again.

thanks for being honest louloubelle i understand what its like to be in so much pain looking after lucus was not easy but now he has learnt to help me with washing, tidying up, hovering (hope this don't sound like child labor lol) but oscar will start to do the same aswell. i think its good for him to though, he learns to help and know it somethings means waiting for things.
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Date: 19.09.2011
From: Shiffy

Subject: Re: what would you do?

HI Davina,

I really empathise with Your situation in trying to have another baby and also trying to control your R.A, LIFE is slightly up side down with this disease.

I AM R.A sufferer for nearly 18 yrs, im 33 now and I NEVER really had the courage to get married and start a family cos of the disease so I DON'T know what would best apply to you regarding having another baby, best people probably would be the PROFESSIONALS LIKE your consultant and nurses. I read some of your posts were you mentioned your concerned about joint and bone damage, i have damage on most of my joints and they are permanent and thats due to me not taking no drugs when i was first diagnosed. but as you also mentioned that you been taking the latest drugs from a early stage this should prevent any permanent joint damage for you. READING YOUR POSTS do make me concerned whether these drugs are really helping people as I just started MTX.

I Hope the drugs can make difference in our lifes and also prevent further joint damage, I just wanted to let you know that I HAD joint DAMAGE WITHOUT TAKING DRUGS but hopefully you should be fine while your on the drugs at a early stage.

Take care and all the best
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Date: 19.09.2011
From: davina

Subject: Re: what would you do?

thank you for posting shiffy

i hope you do get your baby and maybe wedding someday, we shale not let this illness bet us or stop us!!!
i believe the meds do work when you find the right one for you as there are a few. i do hope the meds have helped stop the damage to my joints but just done nothing for the pain and stiffness lately.

i know what you mean about up side down, one day ok the next down/pain then again and again lol
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Date: 29.09.2011
From: davina

Subject: Re: what would you do?

well wish me luck got to see the rheumy 2day and ope he will be supportive with my decision.
why can't it be as simple as before with my son, just go and conceive. lol
well wish me luch. xx
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Date: 29.09.2011
From: marlene

Subject: Re: what would you do?

Wishing Luck, I hope you get the support you are looking for from your Rhumy Guy. Let me know how you get on. X
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Date: 30.09.2011
From: louloubelle

Subject: Re: what would you do?

Good luck Davina - my rheumy was great when i told him i wanted to try for a baby. Although, I suppose I didn't discuss it with him, I just told him what the deal was and asked him to sort me out with suitable meds - i'm a bit bossy like that lol.

Keep us all posted hun
lou x
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Date: 30.09.2011
From: davina

Subject: Re: what would you do?

well where do i start. it was horrible and no support. now the my partner is listening the doctor and not what my wish is.

my doctor decided that because my ra is not controled it would be better that it is before i decide to come off my meds and because he said when i come off them my pain levels with spike Mark has now decided that we should wait and see if the new meds the rheumy wants to put me on will work.
so i asked if it does work when will we have another child? no answer! (cause he don't know)

so now my choice is try the new meds which is rituximab infusions, i have looked it up and saids even tho no evidence found they would like you being off it for 12 months before contraception.
any one have other information?

i asked the rheumy is it not better to have a baby now while my body is used to the pain and problems so my body wouldn't find it a shock when i stop meds and maybe find concieving a problem?
he said no!

and thats it!!! so mark now saids for us now to try the meds and see.

sorry for the rant, i am so upset and feel i have no support and been pushed into the corner that everyone wants me to be in. and i don't want to be there.
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Date: 30.09.2011
From: Rachel

Subject: Re: what would you do?

Hi Davina, I'm sorry things are so c**p! I can totally sympathise. I'm 39 with no kids and desperately want a family. I've been on methotrexate which I'm not responding to. My rheumy has just prescribed Leflunomide alongside the Meth which you have to be off 2 years before conceiving or have it washed out (don't like the sound of that!). We're now trying to decide whether to concentrate on controlling the RA and maybe try for adoption (while I may still be accepted -slightly concerned about the medical but as we both work with young people I feel we would stand a fairly good chance. I feel like the RA is controlling my whole future at the moment and I'd really rather it wasn't!. Really hope you find the solution that is right for you xx
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Date: 30.09.2011
From: marlene

Subject: Re: what would you do?

OH davina, sorry to hear the news wasn't what you wanted to hear. Take a step back sweetheart, you may need to put yourself in your partners shoes, seeing you suffer is not easy for someone who loves you. I am sure he is putting you first second and third. Sit down and ask him why he wants you to wait and i bet you it will be for you to get well. Life is hard for our partners and famillies also. Davina I feel for you don't get me wrong and i'm not taking sides. It is so easy for us to dismiss what others feel for us when we are in pain. My hubby tends to joke or go a bit quiet, because what can he do. He helps with the things that i can't do but he cannot do the one thing i need and that is to be well so he feels a bit of a let down on that one.
Don't feel your not supported i bet your partner is also upset. I am so sorry you feel pushed into a pace you don't want to be.It will take time but you will be in a better place soon. When the RA is under control, you can then put your case across to the rhumy team and ask them to support you with your wish for another child. I am sending you all my best wishes and a big hug XX Take Care
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Date: 30.09.2011
From: marlene

Subject: Re: what would you do?

Hi Rachel just wanted to say hello. Hope you find a solution to your problems. You sound a lovely couple adoption how wonderful is that. Hope you are sorted one way or the otherf real soon. Good Luck with what ever you decide. Take Care.
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Date: 30.09.2011
From: charlotte

Subject: Re: what would you do?

I have found myself in a similar dilemma for it to all change a few months later. I am 31 and hubby 46 no children. We want a family but was prescribed the meth among other bits. He knew i wanted children so tried the sulfasalazine first. This was ok but didn't conceive before i got progressivley worse. has to then decide what to do next and i was the same as you rachel. My hubby said he couldn't watch me suffer any more. So we applied to Adopt in March.

This is meant to be a positive thing but its such a hard process and so very slow.

Anyway i have now been taken off of meth as couldn't tolerate and now will have enbrel. Nurse said can come off for two weeks once settled me, concieve and manage another way. After birth then go back on this..

So we are now going to seek fertility tests so we know that coming off the drugs is not a waste if you get my meaning but still going with the adoption

hang on in there Rachel - there is light at the other side although it can change so quickly as you all know

sorry for going on a bit but wanted to give you some positive
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Date: 02.10.2011
From: Rachel

Subject: Re: what would you do?

Thanks guys for all the comments, its just reassuring knowing that others are having the same dilemmas. I know how long the adoption process can take as I work for social services. I still haven't the faintest idea what to do, but I'm swinging towards (due to my age) of concentrating on getting the RA stable and going down the fostering/adoption route but that may not be right for everyone and if I were a few years younger I'd probably still aim for my own children. But still no concrete decision made and in the meantime the dreaded leflunomide stays in the kitchen cupboard. Take care and hope you all find the right solution for you xx
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Date: 02.10.2011
From: davina

Subject: Re: what would you do?

hi rachel hope all goes well with the adoption process and get what you want.
hi marlene thanks for the support, i know he does love me and wants me to be out of pain and be my old self but i know it will properly never happen and i have had to come to terms with that and hopefully he will soon.

i'm wondering what the rheumy may do if i decide to not go onto the new meds and stop the ones i'm on now for a baby?
and will i still get the treatment after the baby is here?

i have to not had a infusion for 12 months before i start to try and conceive and this is a long time if it works, but normally you have an infusion every 6 months so the 6 months that i don't have the infusion for i'll be in pain and have a hard time for 6 months before i even try to conceive

charlotte i do hope you to get a child you want. hope it doesn;t take to long. xx
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Date: 02.10.2011
From: marlene

Subject: Re: what would you do?

Hi Davina, you sound brighter, so glad to see you posting. I am wishing all you guys all the luck in the world with what ever you decide. Take Care Big Hugs X
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Date: 03.10.2011
From: davina

Subject: Re: what would you do?

hi marlene i feel a little better after talking to my partner. he does feel a little differently but his opinion counts so much.
i am in a great deal of pain and hate it, had a lovely week of not bad days now back to bad days, hopefully won't last to long.

has anyone had pain in their bottom ribs due to ra? it feels like the are browsed when i breath in or lay on them or move wrong. its been like it for 3 weeks nearly.
thanks
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Date: 03.10.2011
From: marlene

Subject: Re: what would you do?

Oh bless you, glad to hear you had a chat with your partner. Sorry you are in pain again. I have had such pain for nearly two weeks, but what can we do just soldier on. You Take Care X
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Date: 04.10.2011
From: davina

Subject: Re: what would you do?

thanks marlene, yes we just get on with it as always. x
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Date: 04.10.2011
From: Caroline Jephcott

Subject: Re: what would you do?

Oh I was so in your position. The only difference is my husband and I both with arthritis, already had meds to control, well I say control, sort of ease the arthritis and we had to come off nearly all of them. We were both on Anti TNF which worked a treat but that had to be dropped, I threw Methotrexate into my PJ squirrel case at aged 8 and then down the toilet at aged 19 because it made me sick and did nothing, you certainly can not get pregnant on methotrexate and I have heard you need to be off the drug at least for several months prior to trying but ask you Dr about that.

I was also on Tramadol a painkiller, that had to go, I also was on indomethacin an anti inflamatory, that had to go. I have always been on steroids for arthritis and wow do these work for both my husband and I and in fact steroids are known to be safe during pregnancy. They do take the pain away and you may want to discuss steroids as an option for controlling your illness if you want to try for a baby soon. It took my husband and a year to get preggers, I started to think oh blow it, I can't take the pain and was just about to go back on the pill when I decided I should do a pregnancy test before I did and it came out positive!

Now I don't know what happens with RA but I have Juvenile Arthritis and am pretty sure I have read that any arthritis in women during pregnancy just seems to vanish and then come back with a vengeance after baby is born. This was the case for me and in my 4th month I didn't miss painkillers or anti inflammatory at all. It is so worth the initial pain whilst your body adjusts to having no meds and being pregnant for the first 3 months.

Yes my arthritis did come back with a vengeance but this is easily controlled with increasing my steroids and painkillers and also there is research to suggest that breast feeding helps prevent the illness flairing major style. I stayed on steroids for a while as I chose to breast feed and you can not be on Anti TNF during pregnancy or during breast feeding (well you can but you have to sign a legal doc to say you will waive any major disaster that happens to your child as a result of taking Anti TNF) I couldn't do that to my child. In the states they use Anti TNF throughout pregnancy and no probs have been reported.

I would personally say just go for having a baby if that is important to you right now. Meds and illness will always be in your life but you can't put your life on hold for your illness. As arthritis progresses joints deform, muscles weaken and you may need surgery a lot. If you are not at that stage of the illness then go for it now, be happy, don't let your medical side of life interfere with being a normal human being, a woman and someone who I am sure makes a lovely mummy. x

Carrie

My Blog -http://disabledpositiveparent.blogspot.com/
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