Update: coming off meds to conceive : /

dutchess

Its been a while since I posted but thought an update was necessary. I came off my meds nearly three months ago (methotrexate). In the last few weeks things have really kicked off. I have ra/sjogrens and cutaneous vasculitis. Anyway vasculitis has kicked off big time having been on 30mg steroids for week and now 40mg having no benefit with the added hot sweats/aches/pains/distrubed nights sleep etc. Anyway have to go to see dr this morning to see what next. Dr pointed out last time that hormones in pregnancy tend to do the same thing as steroids so thats why women normally go into remission when pregnant. However with me steroids don't seem to be having that effect. Today I feel they'll either tell me to bail with my quest for a child, send me to the day unit or with some light at the end of the tunnel maybe there's something else that can be done. Just needed to get this off my chest before drs appointment today. Gonna be a tough day. I appreciate all the support that I've been given on this forum, it really is a lifeline.
Take care
Luv Kelly

elnafinn

Hi Kelly

I am sorry to hear things are not too good at the moment for you and to wish you all the best at your appointment today. I hope the day is not going to be as tough for you as you envisage.

Let us know how you go on, today

Luv
Elna x

tkachev

Bailing out will be your decision.They might advise this but you have come this far so you have to decide if the pain is worth it.I am sure at the moment you feel like getting some relief from the pain but hopefully the doc might have something to help.
Hope things go well
Tkachev

dutchess

Thanks for your kind wishes is much appreciated at this time. I have to stay on 40 mg of steroids for another week. Have been signed off work for a week to rest. I can only start to try to conceive if they can get the steroids down to 10mg if not I'm back on the methotrexate. So have got to take each day at a time. Think due to the vasculitis is why its not just a matter of putting up with the pain I guess there must be other risks. If it was just the pain I'm so determined I would carry on. GP said my consultant is sure that they will get it under control so its just a waiting game :? Now have to try to fill my week and keep positive.
Take care
Luv Kelly

woodbon

Hello, I'm sorry that you'r having a hard time, it must be so difficult, with lots of conflicting emotions. You must do what feels right for you, for your own long term peace of mind. I had to have a hystorectomy (sp?) when I was 30 and childless, the gynie offered to try and do a smaller op, leaving me with IVF as a possibility. I had severe endomitriosis and was quite ill. My choice was simple for me, hystorectomy, and enjoy our life. We have, sometimes wished otherwise but deep in my heart, that was right for me. But you are your own person with your own set of circumstances and if you want to try for a baby, then thats what you must do. I still enjoy the trying bit, although I'd be a medical mystory if I got pregnent! I'm 54 as well as not having the right equipment!!! :oops:

Take very good care of yourself, I hope today is not too much of an ordeal for you. Then get plenty of rest. love Sue

skezier

Hi Kelly,

I am sorry everything is up in the air for you. Try and get some rest and maybe the steroid can come soon. I really hope things work out for you. Take care Cris x

dutchess

Thanks for all your comments it really is a help to know there's people out there who understand. Sue thanks for in the insight into the very difficult decision you had to make. My hubby says he just wants me to have my quality of life back again when I was on methotrexate. Guess its really hard for your partners to see you go through this. He's being very supportive and will support me with any decision I make. At the moment I'm going to keep listening to the professionals and focus on resting and getting through until next week when I see my Gp again and see where I'm at. I think when I embarked on this quest I assumed I would come off my meds for three months then could start to conceive but lifes never that simple. This is only the beginning of a long road. I'm just grateful to have the support of this forum with so many lovely supportive people who understand.
Take care
Luv Kelly

frogmorton

Hi Kelly
Sorry I missed your thread yesterday
Also sorry that your quest to conceive is not going easily
I expect is is very hard for your O/H to watch you suffering, but not having a child when you want one is also enormously painful.
I will keep everything crossed for you and hope that very soon you might be posting with some very good news
Take care
Toni

dutchess

Well its nearly a week on and have been following gps advice and resting up. Legs seem to have calmed down (vasculitis) but still exhausted not feeling great. Go back to drs tomorrow morning first thing. Really not sure how I feel about it all. Hubby asked me last night and I just don't know. The last weeks have been so rough that its hard to even comprehend having a child at the mo then its also at the back of my mind that once they start reducing my steroid they have to get it below 10mg to enable to be try to conceive. Guess there's just so many unanswered questions. I've been filling my time researching holidays so having something positive to think about Just had to get this emotional confusion off my chest, what a rollocoaster! Think drs orders to rest finally made me realise I have to look after my body though and listen I usually just keep pushing through. Another question I have though is resting like this is helping but I can't live my life like this ongoing economically bills have to be paid and mentally I know work keeps me going. Is going to be interesting to see how my body responds once I go back to reality.
Take care
Luv Kelly

joanlawson

Hi Kelly

I really sympathise with you in your quest to have a baby. I also had a long quest when I was in my 20s, including operations which didn't work, and unpleasant drug treatments. I know what a rollercoaster of emotions you are experiencing, but I felt that I would try anything if it resulted in a baby. I guess you feel the same, and I do hope you can stick at it and be successful eventually.

In my case, after 6 years, we decided to apply for adoption, and were amazingly lucky to be placed with twins ( a girl and a boy, aged 6 weeks when they arrived with us) There will always be a little part of me which is sad that I didn't have a baby with my husband, but the twins are our life ( 38 now :!: )

Keep your spirits up, and I hope things will work out well for you.

Joan

dutchess

Another update! I've had such an up and down day! Saw GP first thing this morning leg had finally gone down agreed to reduce steroids to 30mg and back to work review in week! Went to work legs flared up again, chat with GP now off work with rest for another week! To be reviewed but stick to 30 mg steroids. Life is a rollercoaster!!! Now need to just see how this week goes and review again. Kinda come to a decision though if this need to rest continues I think I'll have to go back on meds (economic reasons) save for a year or so to enable me to rest and not work! That may be the only way. But at present does still seem to be hope.
Take care
Luv Kelly

woodbon

HI, I'm sorry that you are having a bad time, but its in a good cause . You'r trying your best and theirs nothing more you can do. I glad the doctor has signed you off work, that should help you to get plenty of rest, which should help. Its still perfectly possible you will get your baby, so try and be as relaxed as possilbe.
Take care, love Sue

dutchess

Well its been a real rollercoaster ride but after alot of crying and talking have decided for now to bail out of my quest to conceive. Things have been going badly and after two works off work still feeling no better Have another week of rest. I saw my gp today and he was very supportive. I was offered a job last week which is due to start early nov and think i need to get well to start that plus realistically if I am gonna try to start a family its agreed that I'd have to give up work as me off my meds and relying on steroids is very difficult plus there still would be no guarantee that steroids would get a hold of the vasculitis. It was a hard decision to make but I think for now the best one as I gave it my best shot and it was having such a detrimental effect on my quality of life and my oh. For now I'm gonna focus on getting my health back to what it was before which although not great I was able to leave the house, work part-time and have a social life. So back on the methotrexate. Think its gonna take some getting used to. Thanks for everyone's support on here and fingers crossed a few years down the line it will be a different story. I'm aware of the other options so know theres still some hope.
Take care
Luv Kelly

suziev

hi kelly

it's sounds like you have had such a hard time and i think your right to get your life back. it's never an easy path to take and i was lucky that i hadn't started the meds before i had my second child. however my first child took 3 and a half years (without ra) so i know whats it's like to long for a child of your own.
good luck for the future
suzie

page35

All you can do is what is right for you at the time.
all the best of luck in the future, never lose hope
hope the meds get you "better" again
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