Trying for a baby

dovey1

I have been off mtx for 6 weeks and can feel my body start to shut down. I have never been rid of the pain fully but it was bearable. My partner and i have decided to have a baby which is my second but i didnt have RA with the 1st so not sure wot to expect?? I cant conceive for another 4 and ahalf months and already i am only just walking as knee's have swollen and neck and shoulder pain is increasing by the day! my hands are curling inwards also????

If anyone has had similar experience i need some advice and general encouragement that i am one day not going to wake up and not be able to move!

frogmorton

Hi Dovey
Have you looked at the pregnancy and arthritis thread on the 'living with arthritis' forum.
Good luck I hope all goes well for you and you are successful in having your baby.
Take care
Toni x

dovey1

frogmorton wrote:

Hi Dovey
Have you looked at the pregnancy and arthritis thread on the 'living with arthritis' forum.
Good luck I hope all goes well for you and you are successful in having your baby.
Take care
Toni x

Thanku, i will have a look

kezzo1

this is a big worry of mine i had ra after birth of my daughter who is now 14 months but when shes 3 we like to try for another but im so scared i wont be able to handle not being on meds and that keep thinking if i should even try for another or not?

dovey1

kezzo1 wrote:

this is a big worry of mine i had ra after birth of my daughter who is now 14 months but when shes 3 we like to try for another but im so scared i wont be able to handle not being on meds and that keep thinking if i should even try for another or not?

Hi, it is such a big decision to take but i think if u dnt try u wont know how ur body will react. i have just had steroid injection as coming off all the meds bought on triple the pain. but now i am good again for a well needed "normall" period! i know once they wear off there will be bad times again but the staff at the hospital are great and i am doing it all for such a fantastic out come i hope. We can officially start trying for a baby in feb 09 so would be great to keep in contact through the experience so u can pick up hints and tips. But remember everyones bodies are so different there is no way of knowing for sure the outcome. x

kezzo1

thanks dovey its just im off my nasiads at mo cos developed asthma and chest probs not sure if its that but soon as i stop meds in anyway i beguin to ache and crack again almost straight away, i hate it. so if im like that now i think being on nothing for as long as it takes to have a baby will be painful, stressful and alot of sick leave for my boss to handle?? but on the brightside my daughter would love a brother or sister and i poss would of tried now if my meds had even started working a little but been on mtx since feb no sign of them working , start injections when delivery arrives, if i dont have meds working soon i risk further deformoty and im only 26. i already have a dodgey finger and 2 toes with bone erosion. :roll: but thanks for the reply u are right i never know less i try.

poppy30

Just wanted to join this thread and say Hi as I've recently stopped my meds in order to start a family.
Was on Mtx and Humira for PA and have been without my meds for 2 weeks! Already noticed my body getting stiffer and to be honest I am petrified about the thought of 6 months without meds before we even start trying for a baby!
Would be nice to keep in touch via this thread to offer support and encouragement.

Poppy x x

hillsam3

Hi guys

Your tread actualy galvinised me to register as I just wanted to add my experience both positive and negative.

Bit of background - had RA for aprox 10 years and was on metotrexate which for me was a miracle drug. I came off the drug about 6 years ago as I wanted to start trying for a family. At the time I had a pretty terrible rheumatologist and he just saw me every 6 months and said still no pregnancy? Stay off drugs. After 3 years I changed specialists to one who told me that although not ideal asaprionine and hydroxyqloroquine (? spelling) could be used while trying (and during) pregnancy if necessary. At the time I was so in the zone of trying to concieve I refused to take any meds.

It actually took me over 4 years to concieve, but I did in the end and now have a lovely baby boy (8 months old). My RA pretty much disapeared during pregnancy and during breast feeding but has started to rear its ugly head again. The unfortunate legacy of my drug free years prior to concieving is that 10 weeks ago I underwent an ankle replacement (I'm 32) which went really well but it has been tough trying to recover with a young baby.

In conclusion I don't want anyone to be put off trying for children if you have RA, having my son is amazing but just make sure that you have a specialist who will look at all the options as needed while you are trying just in case it doesn't happen as quickly as you may hope. As an aside I found accupuncture really helpful in keeping pain and stiffness away when not taking any drugs (it just didn't stop the joint damage).

Best of luck to you all.

loobylu

Hi everyone

Some of you may have seen my previous threads about trying to conceive. I am 35 years old and have had chronic juvenille rheumatoid since the age of 14. I came off methotrexate and started trying for a baby last November. I am now 11 weeks pregnant. However, as the months were passing by and due to my age my rheumatologist decided to take me off my NSAIDs (aceclofenac) in June and I conceived in August so I do think the NSAIDs were having a negative effect.

I am now on prednisolone. My arthritis has been very bad since changing my medication - and I now suffer very badly with my neck which I didn't have any problems with before. However, it has been worth it as I have achieved my goal. I have had such chronic morning, noon and night sickness that it's actually taken my mind off the pain in my joints.

Good luck to all those ladies trying to conceive.

x

sweetpea

Hi All

I'm new to this site and feel encouraged that there are 'others' in a similiar position. We have been trying to conceive for 14 months now and it's definitely been a bit of a roller coaster ride with the meds. I have PA and was on methotrexate for 7 years (my miracle drug!) and leflunomide so had to do the horrible washout from it a year and a half ago ready for us to try starting our family. I was pretty good for about 10 months and survived on just paracetamol, the odd ibuprofen on a bad day and steroid injections. However, been having a really bad flare for the last 4 months and am back on sulfasalazine and diclofenac though I am still don't feel controlled and know that its not great to be on the diclofenac whilst ttc. My consultant has given me 2 options either go back on MTX for while and wait 3 months (though I am 34 (35 in June) and really don't want to wait another year to start a family especially as we've been trying for so long or I can try increasing my sulfasalazine to 6 tablets a day and take 6 ibuprofen and paracetamol. I'm trialling the latter although the ibuprofen just doesn't hit the spot like diclofenac does and steroid injections seem to do bugger all nowadays! I have been off work now for 1 month which is really unusual for me and know that if we weren't trying to conceive then I would have more control and would be on the mtx again. After persuading my gp we are now being referred to the fertility clinic (she was reluctant as my arthritis is so active now). Does anyone know of any other drugs that work to control flares whilst ttc? (hillsam3 will try the acupuncture)

Would really love to keep in contact as Poppy said for support and encouragement. x

purvesrosie

My RA was really bad when trying for a baby but almost as soon as i concieved the pain almost vanished and i had 9mths practially pain free apart from 1 or 2 flares. hth and good luck

poppy30

Hi guys! Just wanted to say that I'm entering week 5 without my meds and I miss them soooo much!!!! Feel that I have so long to wait before we even start trying... let alone conceive!!
Have decided to wait as long as poss before resorting to calling the rheumy and begging for help so am managing on the odd ibuprofen, heat packs, gentle exercise and chocolate(!). I have really taken my meds for granted as I didn't realise quite how much they were doing for me until I stopped them!
As I mentioned previously I have PA and prior to the meds (mtx and Humira) I never had any real problems with my back (many other joints were affected but never my back!). However, since stopping them, my back is the place I am feeling the most pain and stiffness.... I think this is a bit weird and wondered if anyone else has had this experience?!?
Feel like I'm rambling a bit now so will try to post again when my brain is feeling less fuzzy!!! :?

Good luck to everyone out there who is either trying for a family or raising little ones!

Poppy x

sweetpea

Hi All

Went to my gp yesterday and now have to take a slow releasing version of ibuprofen in the early evening to help with night time pain (this is a new one for me!). Am a bit worried about starting it as I have to take 2 x 800mg ibuprofen tablets a night which seems an awful lot AND can take up to 4 ibuprofen tablets during the course of the day. Has anyone else ever had the slow release ibuprofen at night? Gonna take my first lot tonight but feel really fuzzy as it is as I'm building up to 6 sulfasalzine a day. Am really hoping that I get pregnant soon and enjoy some remission!!!

(Poppy-have had problems with my back as well...usually in my lower back, upper part of my ribs and neck and shoulders-have found a nice hot bath, paraceatomal, a massage from hubby and going to bed early can help to ease symptoms).

Fingers crossed for all of us!!!

dovey1

Hi peeps i thought i would do an update, after coming off the meds to start my 6 months break ready to start for a baby i almost immediatly became poorly. I could bearly walk and my knees became swollen with fluid.... i rang my nurse at the hospital and she managed to get me into the injection clinic the next week.... i had knees drained of fluid and 4 steroid injection since then i had a good 3 weeks pain free which was lovely and now things are still managable. I would advice anyone going through this experiance to have the the injections if available as it changes ur look on RA dramatically and refreshes ur mind into thinking i can do this!! so excited getting closer to Feb to start trying and with any luck will get caught as soon as poss. thanks for all post up to date seeing peeps experiance is a great help..

poppy30

Glad you're feeling positive, dovey1!

I had a bad flare after stopping the meds but things seemed to have levelled out now.... really gutted that my psoriasis has come back with a vengence as the nice thing about my meds is that they not only sort out my PA but also my psoriasis! Sounds really ridiculous but I had a good cry the other night... don't think it was because of the pain but because I have a big patch of psoriasis on my forehead and I'm gonna have to change my hairstyle to hide it... sounds so vain when I read back over this post!! Think I need to borrow some of your positive vibes!!! Roll on March when we can start trying.

Good luck for Feb!

Poppy x

liadoyle

dovey1 wrote:

I have been off mtx for 6 weeks and can feel my body start to shut down. I have never been rid of the pain fully but it was bearable. My partner and i have decided to have a baby which is my second but i didnt have RA with the 1st so not sure wot to expect?? I cant conceive for another 4 and ahalf months and already i am only just walking as knee's have swollen and neck and shoulder pain is increasing by the day! my hands are curling inwards also????

If anyone has had similar experience i need some advice and general encouragement that i am one day not going to wake up and not be able to move!

hi , i had to come of medication to have both my sons and i was allowed to take 5mg steroids a day and through the pregnancy and both boys are healthy. Please dont try to be completely drug free as it will be awful for you.
linda

sweetpea

Just as I thought I was getting control back and drugs were beginning to work its all gone pear shaped again-or should that be sausage shape-my fingers and thumbs are horrendous even though last week I had ultrasound guided steroid injections into the tendons (effect has worn off already!). Been back on the diclofenac for the last month (just can't survive without it even though I really tried the ibuprofen) and increased now to 6 sfs a day with little effect. Really wish that normal pred. jabs would work but feeling that have run out of options now as I've tried most things besides going back on mtx! Rheum phoned to say she is at lost where to go next but is going to do some research. Had our first visit to the fertility clinic last week and the positive news is that there isn't a reason why I shouldn't get pregnant (though I know diclofenac does make it more difficult). Might go down the ivf route if we can if this flare doesn't stop (been since June!!!)
Doesn't it make you jealous of 'normal' women who don't have to go through this to achieve a pregnancy.

glitterbug

Hey there!

I've just been reading all about your experiences and thought I'd post my story so far. It's a bit of a long winded one but chatting to people in a simular situation is always good to know i'm not alone.

I'm 30, had very aggressive RA since I was 18mths old. Been trying for a baby for 4 yrs with no avail. Tried stopping all meds (been on enbrel, Prednisalone & Diclofenac) for 8 months...couldn't cope so had to give in again! We were referred to fert specialists locally who turned out to be absolutely useless and took over 2 years to do tests etc, still no answers. o took it upon myself to get refferred up to Guys in London. Have been there for 1 month and have so far had all tests done again which have all come back positive. Have got an appointment to discuss next step in dec. Unfortunately in the 4 yrs of trying and messing around with the meds I have had to give in to a knee replacement which is on Jan the 7th, so everything's on hold til then.

I was just wondering if any of you have found any "negativity" from doctors or specialists about carrying a pregnancy with a chronic illness? The reason I ask is up until this point my Rhuemy, GP's etc etc have all been fine and have never mentioned any specific risks (although as with every pregnancy there are risks). Now I have been referred to Guys I have been pressured into going to "pre-conception" counselling, which I have my appointment for tomorrow. To be honest I have been trying for 4 yrs and have done lots of research myself and chatted to people far worse than me who have been fine and had lovely healthy pregnancies and babies. I know there are risks but that would never stop me. I just feel a little dis-heartened by this whole "counselling" thing!!!

Jo x

sweetpea

Sorry to hear about your experience and I hope that the ‘pre-conception’ counselling was supportive towards you although it does seem ridiculous though at this stage! I think a handful of specialists and doctors can be negative when dealing with conception, pregnancy and a chronic illness. I have had a similar experience in that there have been some doctors who have been fantastic and supportive and others including my rheumy (I now see someone different) and the ‘locum’ I saw at the fertility clinic who are reluctant for us to conceive until the arthritis is controlled and in remission. I think it is a double edged sword in that I have been told that having active arthritis will make it difficult to conceive and therefore some docs are reluctant for us to try until the Arthur is controlled but the drugs that will really control the arthritis can’t be taken in pregnancy! I wonder if the specialists have got to ‘cover’ themselves somehow so that we are aware of the ‘potential risk ‘to our health when trying to conceive? I know that I am doing permanent damage to some of my joints and I am going for an assessment for Humira on Thursday to try and avoid this. Though will really weigh up the pros and cons in case I do qualify for it as my aim was to try and take the ‘safer drugs’ for conception! Hope that you are feeling a little better and have my fingers crossed that everything will work out soon. x

glitterbug

sweetpea wrote:

Sorry to hear about your experience and I hope that the ‘pre-conception’ counselling was supportive towards you although it does seem ridiculous though at this stage! I think a handful of specialists and doctors can be negative when dealing with conception, pregnancy and a chronic illness. I have had a similar experience in that there have been some doctors who have been fantastic and supportive and others including my rheumy (I now see someone different) and the ‘locum’ I saw at the fertility clinic who are reluctant for us to conceive until the arthritis is controlled and in remission. I think it is a double edged sword in that I have been told that having active arthritis will make it difficult to conceive and therefore some docs are reluctant for us to try until the Arthur is controlled but the drugs that will really control the arthritis can’t be taken in pregnancy! I wonder if the specialists have got to ‘cover’ themselves somehow so that we are aware of the ‘potential risk ‘to our health when trying to conceive? I know that I am doing permanent damage to some of my joints and I am going for an assessment for Humira on Thursday to try and avoid this. Though will really weigh up the pros and cons in case I do qualify for it as my aim was to try and take the ‘safer drugs’ for conception! Hope that you are feeling a little better and have my fingers crossed that everything will work out soon. x

Hi Sweetpea!

Thank you so much for the reply. I'm back with a little update....It turned out to be a very positive meeting rather than "counselling". The lady I saw was a specialist in "difficult & complicated" pregnancies. She was very reassuring and positive. She did point out risks that I already knew so that was good. My research had paid off!!!!

Also the other update is that we have now been diagnosed with "Unexplained Infertility", which to me I found very frustrating!!! But after much though have come to the conclusion that this is a positive conclusion as there is nothing "medically" wrong with me. We have been put on the IVF waiting list but nothing can start until I have recovered from my knee replacement which is on Thursday next week.

I am still a strong believer that the Diclofenac could well be causing some issue with conceiving, so I plan to stop these while waiting for IVF and after the knee to see if maybe, just maybe it could still happen "Naturally"!!!

Jo x

sweetpea

Hi Jo

Am so pleased that your meeting/'counselling' was positive and reassuring and you have found someone that will help. We have our next fertility appointment a week Wednesday as I asked to be referred to someone who specialises in medical conditions pre- pregnancy. Apparently they normally only see patients with lupus so it was a bit of a push for her to see me. Was it easy for you to get an appointment at Guys and did you have to go privately?

At least you know that there is no reason why you can't get pregnant although the terms they use can be disheartening (having primary infertility on your notes doesn't exactly make you feel great!) My gp is researching the effects of the biologics in pregnancy as I have been told conflicting advice from the consultants which definitely makes it really hard to know what to do. I'm now trying azathioprine with the diclofenac so see if that will hit the spots!

I hope that your knee replacement is a success and will be thinking about you on Thursday. Here's hoping that the IVF waiting list isn't too long and that 2009 brings us all positive news!

Lisa x

natashaskelton

sweetpea wrote:

Just as I thought I was getting control back and drugs were beginning to work its all gone pear shaped again-or should that be sausage shape-my fingers and thumbs are horrendous even though last week I had ultrasound guided steroid injections into the tendons (effect has worn off already!). Been back on the diclofenac for the last month (just can't survive without it even though I really tried the ibuprofen) and increased now to 6 sfs a day with little effect. Really wish that normal pred. jabs would work but feeling that have run out of options now as I've tried most things besides going back on mtx! Rheum phoned to say she is at lost where to go next but is going to do some research. Had our first visit to the fertility clinic last week and the positive news is that there isn't a reason why I shouldn't get pregnant (though I know diclofenac does make it more difficult). Might go down the ivf route if we can if this flare doesn't stop (been since June!!!)
Doesn't it make you jealous of 'normal' women who don't have to go through this to achieve a pregnancy.

Hi, Ive not been on this site before but was inspired to join when reading there are more people in my situation than I thought. I have been on Diclofenac and SFS for two and a half years and finally felt that my drugs where working. The problem was we had been tying for a second baby for 2 years (I wasn't on any medication for the 1st as I had not been diagnosed at that time)
With no luck at all and no suggestions for what might be the problem we went on to re search my drugs for ourselves. We discovered that Diclofenac may be the causes of our infertility. We were shocked that my rheumatologist had not informed us, and when I wrote my concerns to him, he denied that they had this effect. So we decided to stop the diclofenac without the knowledge of the Rheumatologist. After 3 days I was in agony and forced to go back on them. At Xmas I had the flu and was worried about taking my normal dose of drugs as I couldn't eat and didn't want to take them on empty stomach, so I decided to only take half the dose and after 1 week I felt no worse as a result. After a further 2 wks on the half dose I was curious to see if I could drop the Diclofenac completely. Amazingly I still felt fine after another week. We were amazed and continued on Sulphazalazine only. This week we were over the moon to discover I was pregnant. This is only seven weeks after discontinuing Diclofenac. I am disgusted that if I hadnt done my own research and trial and errors then maybe I would never have found out the truth about Diclofenac and may never have had another baby. So keep your chin up and let yor RA settle and you never know what might happen. I see my rheumatologist on Friday so who knows what he will have to say.

Best Wishes to you

Tasha

natashaskelton

glitterbug wrote:

sweetpea wrote:

Sorry to hear about your experience and I hope that the ‘pre-conception’ counselling was supportive towards you although it does seem ridiculous though at this stage! I think a handful of specialists and doctors can be negative when dealing with conception, pregnancy and a chronic illness. I have had a similar experience in that there have been some doctors who have been fantastic and supportive and others including my rheumy (I now see someone different) and the ‘locum’ I saw at the fertility clinic who are reluctant for us to conceive until the arthritis is controlled and in remission. I think it is a double edged sword in that I have been told that having active arthritis will make it difficult to conceive and therefore some docs are reluctant for us to try until the Arthur is controlled but the drugs that will really control the arthritis can’t be taken in pregnancy! I wonder if the specialists have got to ‘cover’ themselves somehow so that we are aware of the ‘potential risk ‘to our health when trying to conceive? I know that I am doing permanent damage to some of my joints and I am going for an assessment for Humira on Thursday to try and avoid this. Though will really weigh up the pros and cons in case I do qualify for it as my aim was to try and take the ‘safer drugs’ for conception! Hope that you are feeling a little better and have my fingers crossed that everything will work out soon. x

Hi Sweetpea!

Thank you so much for the reply. I'm back with a little update....It turned out to be a very positive meeting rather than "counselling". The lady I saw was a specialist in "difficult & complicated" pregnancies. She was very reassuring and positive. She did point out risks that I already knew so that was good. My research had paid off!!!!

Also the other update is that we have now been diagnosed with "Unexplained Infertility", which to me I found very frustrating!!! But after much though have come to the conclusion that this is a positive conclusion as there is nothing "medically" wrong with me. We have been put on the IVF waiting list but nothing can start until I have recovered from my knee replacement which is on Thursday next week.

I am still a strong believer that the Diclofenac could well be causing some issue with conceiving, so I plan to stop these while waiting for IVF and after the knee to see if maybe, just maybe it could still happen "Naturally"!!!

Jo x

Hi, Ive not been on this site before but was inspired to join when reading there are more people in my situation than I thought. I have been on Diclofenac and SFS for two and a half years and finally felt that my drugs where working. The problem was we had been tying for a second baby for 2 years (I wasn't on any medication for the 1st as I had not been diagnosed at that time)
With no luck at all and no suggestions for what might be the problem we went on to re search my drugs for ourselves. We discovered that Diclofenac may be the causes of our infertility. We were shocked that my rheumatologist had not informed us, and when I wrote my concerns to him, he denied that they had this effect. So we decided to stop the diclofenac without the knowledge of the Rheumatologist. After 3 days I was in agony and forced to go back on them. At Xmas I had the flu and was worried about taking my normal dose of drugs as I couldn't eat and didn't want to take them on empty stomach, so I decided to only take half the dose and after 1 week I felt no worse as a result. After a further 2 wks on the half dose I was curious to see if I could drop the Diclofenac completely. Amazingly I still felt fine after another week. We were amazed and continued on Sulphazalazine only. This week we were over the moon to discover I was pregnant. This is only seven weeks after discontinuing Diclofenac. I am disgusted that if I hadnt done my own research and trial and errors then maybe I would never have found out the truth about Diclofenac and may never have had another baby. So keep your chin up and let yor RA settle and you never know what might happen. I see my rheumatologist on Friday so who knows what he will have to say.

Best Wishes to you

Tasha

dovey1

Hi, i am 6 months off mtx now and ttc, had steroid inj about 7 weeks ago and have had a brill xmas pain free and normal!!! i was sooo low b4 inj could hardly walk, dress or help with my 5yr old daughter! so upsetting! i woke up this morning and wrist, elbows and shoulders were stiff and painfull....to be honest it was no where near as bad as b4 so not feeling bad at all, but know it wont last much longer!! i have heard being pregnant can put the RA into remission!! i hope we get caught soon. Also anybody had elbow lock and can not straighten, not terrible painful but very week!

sweetpea

Hi girls

Congratulations Tasha...what fabulous news. You must be over the moon after such a long wait. My rheumy is fab and explained about the impact diclofenac can/could have. Recently I have tried as hard as I can without them and even managed 7 months off all medication this time last year but unfortunately didn't manage to conceive! Well done to you though for persevering through the pain and what a fantastic result which shows that the diclofenac obviously made a difference to you.
Dovey-most women with RA/PA usually go into remission I've heard in the 2nd and 3rd trimester...what wonderful news to look forward to I am having problems (new) with my elbows, wrists, hands and knees and am finding everyday living difficult...turning taps on, holding things, washing hair etc etc!!! Its difficult to have new joints flaring so after many months of thoughts and steroids I am starting on enbrel to try and limit the activity and damage. Had it arranged for my first delivery of Humira today but consultant called yesterday to start enbrel instead as it has a shorter half life and the embryo/fetus would be less exposed with enbrel. Have read some controversail reports of enbrel/humira being used as a fertility aid...here's hoping

Been between both threads on here and pregnancy and arthritis on living with arthritis...lots of info on there as well.

Good luck xxx

eckstardeluxe

Hi glitterbug, re your post about Dr's being funny about TTC. I was told after my diagnosis last month not to have anymore children, they said my arthritis advanced more quickly during both my previous pregnancies. Mines is secondary OA though so caused by a spinal illness in childhood. Had it 20 years and never knew, keep saying to my Mum I wished I'd known earlier and she said "why? you wouldn't have had these two beautiful babies" She's right, don't let anyone put you off. I now know I am blessed for what I have but I would never have had my kids had I known, the Dr's would have scared me too much. My OA is severely advanced but I would never ever swap them to go back to how much better I was before. Good luck xx