Pregnancy and biological treatments

lorballs

Hi just wondering can anyone share their experience with me on pregnancy with arthritis.. My husband and I would like to start trying for a baby soon but I have active PA and am taking methotrexate and simponi biologics.. After reading up it said I must be off both meds 6mnths before trying but my consultant said I could keep the biologics until I fell pregnant and when I queried it he then said come off 3 months before trying so I'm just kind of confused as to what I should do and fearful the meds could damage a baby

barbara12

Hello lorballs
And welcome to the forum
Sorry I cant help but we have had a few new mums on here...one has had twins...so hopefully they will see this and advise you.
I just want to wish you well and hope that things go smoothly for you...x

stickywicket

Hello lorballs. It's a long time since I did the pregnancy/arthritis combination. The first time I was one of the lucky ones whose RA cleared up for the duration (then walloped me after) but second time around was rough and we ensured no third

I believe steroids are now OK to take but the anti-tnfs and meth certainly aren't. It's not easy but then neither is motherhood

If you put 'pregnancy' into the Arthritis Care search engine above, quite a lot of stuff comes up - official stuff on the left and former threads on the right. Good luck!

dreamdaisy

I think you have a stark choice: your health versus that of the foetus. To my mind it's a no-brainer: I learned aged 16 that the health rubbish I had enjoyed as a child would more than likely reappear in my offspring or the offspring of said offspring, ergo my choice was easy. My healthy parents had no idea about the genetic bombs they were donating (I was born in the very late 50s) but luckily I did. I know from reading posts on here that women who stop the meds often have a massive flare after the birth which renders them pretty helpless in terms of looking after the newborn so please ensure that you have your support systems in place should you achieve your wish. DD

chez86

Hi Lorballs!

You do indeed need to be off the meth for a while, some say a full 6 months some say minimum 3 months. Go with what you feel right and what you think is manageable..you may initially want to wait 6 months but struggle with your condition and decide to give it a go after 4. Plus, who knows how long it could take to get pregnant! Its impossible to time these things no matter how hard you try.

I have RA & have been on methotrexate for years and have tried 2 'safe' alternatives so far in order to try for a baby soon. Both alternatives didn't suit me..in some ways I feel this could be fate as I admit I don't like the idea of being on strong medication whilst pregnant..

Good luck & do keep us updated! X

lorballs

I'm more worried about the biological treatment as there is no guidance to tell me possible side effects I just worry about the baby more than myself.. I hope I fall pregnant quickly... Thanks for your help!! Makes me sad that I can't just fall pregnant like everyone else this all needs planned and I'm only 30

barbara12

Bless I really do feel for you, but like I have said we have mums on here with different experiences,I know it must be hard for you... we have one lady that's has young children so I will try and get her to send you a PM ..many hugs coming your way...(((()))xx

LignumVitae

Hey Lorballs,
Don't be sad, see it as an opportunity. I can't comment on the anti TNFs but I think it is a case of them being a bit too new for there to be much research and so the advice is similar to meth based on the fact that nobody would ethically do controlled experiments on a foetus by exposing them to such things if possible.

What I mean by don't be sad is that I had to go through the withdrawal (just from meth) and I also felt a bit humph about it at first and I am only a couple of years older than you. Then I realised that in fact it gave me a chance to start getting to really know my body so I knew when I was ovulating, I knew my cycles etc really well.

I only managed three months withdrawing because my body couldn't cope, even with steroid injections. However, I was lucky enough to fall pregnant very quickly. I knew I was pregnant before I got a positive test result because my arthritis got so much better and I am now the happy Mummy of twin 9 month olds. I think if you are going for it then being as positive as possible, building up the excitement despite how hard it can be to withdraw and eating properly etc etc all help to contribute to your overall health which helps with fertility. Sticky is right, it isnt easy but neither is being a Mum! See it as three months of practicing too :shock:

lorballs

Thankyou very much it's nice to hear from such a positive person

chez86

Regarding feeling sad about having to plan everything, I hear ya...it takes the 'natural' feeling and the spontenuity out of it all. As well as the fact that family and friends are more likely to find out that you're planning to start trying...something I'd rather keep to myself and announce when the time is right...ah well!!
Just remember that we are lucky that our conditions still allow us to have children x

Cariad71

Hello everyone,
I'm in a similar position myself, I'm 28 (29 this year) and want to try for 1st baby soon. For a few weeks I've been looking for information on RA/inflammatory arthritis and pregnancy but have mainly found old inactive forums so really glad to find this! Maybe we can share our journeys as I think it helps to talk to people who understand! I was diagnosed with sero-neg inflamm arthritis at 21, and never used a forum until now! Still unsure if I have RA or AS which my sister has. Was very well controlled on methotrexate for about 6 years, naively thought my disease was disappearing with age because I was so good! I started coming off mtx very slowly a couple of years ago because I was doing so well and hated the thought of the long term side effects (I'm a pharmacist and sometimes wish I was oblivious and knew less about the meds!). I also knew id eventually want kids and wanted to see what happened when I came off.

In a way I guess I planned too early, I've been off it completely since dec 2012 but since sept 2013 I've been having one if my worst flares so far.
Been trying to manage with steroids and etoricoxib as don't want to restart a DMARD and potentially put off ttc for years. So far have had a depot IM steroid, 3 IV pulses of methyl prednisolone at Xmas and this week started prednisolone 15mg for the first time ever. It hasn't had much of an effect yet so I'm impatient and disappointed.

That's enough about me! Re your question, I'm pretty sure 6 months off mtx is recommended as its a teratogenic drug (stops baby developing properly). There seems to be studies around about increasing evidence for safety of the biologics in pregnancy but personally I'm too afraid to take anything except steroids during preg, not even keen on them but can't be in this pain for that long. My rheum recently suggested azathioprine which they give crohns patients during preg but again I'm very reluctant. I think its easy for drs to say 'this is relatively safe in pregnancy' but when it comes to your body and baby, its different! Xx

stickywicket

Hello cariad71. It's lovely to meet you but, as we say in these parts, sorry you had to find us.

I hope the steroids do kick in though they don't seem to work for everyone. (I love the little monsters ) Long ago, in the Dark Ages, when I was pregnant, even anti-inflamms weren't allowed. Like you, I'd take nothing to harm my babes but it was a very rough ride with the second one.

Unfortunately, mothers-to-be (or, should I say, would-be mothers-to-be) don't seem to hang around for too long on here. I hope one will see your post and answer it. Our friend LignumVitae was so successful she now has twins and so they keep her out of mischief a lot

Good luck with the pregnancy thing. We did have a poster who started a blog called Operation Up The Duff (or maybe something similar in lower case or without spaces). The 'op' was successful. You may be able to find it somewhere in cyberspace.

Cariad71

Thanks stickywicket,

I guess, like me, people come on here generally when they feel they need most help and feel alone. I didn't even ever think about the existence of forums for arthritis in my last 7.5 years of having it but sitting here in my 'special' chair, off work this week with nothing to do and feeling fed up/alone has certainly led me to finding you guys! I wonder what happened to the potential mums to be who didn't hang around?! I hope it's because they were so successful and didn't feel they needed you guys anymore!

Feeling very fed up this am, pred seems to have done absolutely nothing after 4 days, I even took 25mg yesterday instead of the prescribed 15mg dose but symptoms are worse since last night. I had this great plan that I'd manage on steroids for about a year to get pregnant and have a baby, but I don't seem that responsive to steroids for some reason.

I have looked at lignumvitaes posts and also found the 'operation up the duff' blog when searching the Internet. I found them a huge help and am inspired by them. I'm just not sure I'm strong enough to suffer the pain they did for another year or more. The likelyhood of having to restart a DMARD/anti tnfs is growing!

Thanks for your reply its really nice to have someone to talk to. Pretty sure I won't be disappearing for a while! Xx

stickywicket

I'm sorry you're getting no help from the pred. I knew that the jabs were a bit hit and miss but I thought the tablets worked for most. Please go steady with them. As a pharmacist you'll know that self-prescribing is a bad idea.

If you do succeed in getting pregnant all this 'best laid plans' stuff will come in handy. Be prepared for many plans going wrong for many years

We do have one or two who have opted to put their pregnancy hopes on hold and resumed methotrexate. I think it was 'debrakelly' who did that fairly recently.

One thing I can promise you is that there's no need to feel alone on here. Arthritis can be isolating and we all get that. Just join in anywhere. Here is for the arthritis stuff. Chit Chat is usually more light-hearted.

Cariad71

Good morning,
I Still don't seem to be having any effect at all from the prednisolone, I even checked their expiry date this morning as they seem like inactive pills! I only had about a weeks full relief from the 3 IV pulses I had in December, for some reason I don't seem to have a great effect from steroids. Although when also on mtx I've had good response to the depots in the past, obviously the combination is better.

If still no response by mon ill ring rheum and ask if its worth increasing the dose. I know how silly self prescribing is and would certainly tell patients off for it, but I felt desperate! I think healthcare professionals make the worst patients, I know I do! I used to take mtx on different days each week!

It is a bit disappointing to see others who've given up their pregnancy hopes for now, but trying to stay positive and focus on the success stories. Thinking I may ask to start hydroxychloroquine if no success from steroids, would probably stop it if/when got pregnant though.

My second niece/nephew is due very soon so I'm hoping to be able to get a bit of practice in to see how I'd manage! At the moment I've no idea how I'd manage to crouch on the floor, bend over a bath etc, I struggle to look after the cat!
Xx

stickywicket

I'm sorry the pred isn't working for you. Even though I haven't used the pills for years it's always nice to know there's a Plan B.

Have you tried hydroxy before? Years ago I had it on its own and it did very little for me but, in combination with meth, it's worked well for years.

I think 'mothering-by-proxy' is a great idea though no parent in their right mind would have allowed me to handle their babes the way I had to handle my own It worked after a fashion. They lived, after all My Mum was a big help though. I flared after both were born for about 6 months and don't know how I'd have managed without her.

Cariad71

I haven't tried it before, the impression I get is its one of the 'weaker' but better tolerated DMARDS that's usually used in combination, I've heard a lot of people say on its own it doesn't do a lot but willing to try I think as its one of the safer ones for pregnancy. The frustrating thing with DMARDS is the time they take to work isn't it?

I must say I feel lucky (even though fed up at moment) that my RA seems relatively mild compared to a lot of other people. Being on here makes me feel like a bit of a fraud if anything, I've only ever needed one DMARD at a time with the odd steroid injection until
Now, never had to consider biologics until
Now, and have led a mostly normal life during my 20s usually being very active and able to work full time. I can't imagine what it's like to have it even worse as this feels bad enough, my heart really goes out to people.

I also worry how I'd cope if flared after birth but I'm also lucky my mum lives nearby and retired early, so I'm sure I'd be accepting some help if my sisters don't take up all her time with theirs!

stickywicket

You're not a fraud. Never apologise because there are people worse off than you. There always will be but that doesn't lessen your own pain, does it

Since I came on here I've realised just how much could have gone wrong for me but, thankfully, didn't. We all have pluses and minuses. I find the trick is to hang on like mad to the pluses and try and ignore the minuses

sarah2012

Hi, have not been on here for a while (as a browser rather than a poster), as I've been going through all this myself.
With my first son 10 years ago, my PsA improved out of all recognition, and stayed that way for the next four years. Before then I was on crutches and had had several ops to patch up my feet, but had not been on serious meds (I was 'too young', apparently!). During and after pregnancy, I was not on any meds at all, and everything remained stable, it was fantastic.
Unfortunately the arthritis came back with a vengeance after a family holiday, and deteriorated very quickly. Meds, a combo of DMARDs, meth and then Humira (anti tnf, now with a hideously unspellable name), got it stable, but we always wondered if another baby might be a better answer. Doctors were very anti the idea, but gave some advice. I came off the meth in Nov 2012 (with relief, it always made me feel rubbish anyway), with the idea of gradually cutting down other meds and seeing how I did.
I fell, slightly unexpectedly, pregnant, three months later, and immediately stopped all meds - the PsA very obediently didn't flare. However, the 20 week scan picked up that our baby had a hypoplastic aorta and left ventricle. There is no evidence it was caused by any residual meth in my system, but it is a possibility as the advice on stopping meds was a little hazy (I had the time frame advised at anything between 1 month and a year).
This does have a happy ending though. Our little boy was born in November 2013, and with absolutely top class care from John Radcliffe and Great Ormond Street, he had open heart surgery at 11 days old and was home for Christmas. Now nearly 3 months, he is grinning up at me happily from his little nest and is worth every second and more of the stress he put us through.
My own health, well, it's ok. I had a flare just before he was born, and struggled in the first few weeks (knee, wrists), partly my own fault as I wanted to express and refused to go back on my meds straight away. Am now back on everything bar meth, and can report that it has settled down again. Meds seemed to have a quicker effect than previously (especially the humira) - maybe the treatment 'holiday' gave it a bit of a boost?
I'm not sure this (extremely long, sorry) story has a moral, especially as everyone's arthritis is unique to them. But I would say, make sure you are clear of meth before trying, and that in my experience both pregnancies were very much the right thing to do.
Good luck x

Cariad71

Hi Sarah,

Thanks for your reply its useful to hear other people's stories. I feel i have sort of hijacked this thread from the initial poster but have found it hard to find places to be able to discuss the whole pregnancy/arthritis thing!

I'm sorry to hear of the defect your baby boy has, but glad he's safe at home with you and happy is it the sort of thing that may cause him future problems or is it mostly resolved by the surgery? (Sorry for my ignorance). It is a bit scary to hear that, especially if you'd been off meth for 3 months as I have read a few places that 3 months is acceptable. I'm interested to know what the other meds were that you were on when you fell pregnant, did it include the humira? And how long were you on them before you found out you were preg I.e. was he likely to be exposed to them for long?

I've been off meth for over a year and wasn't exactly ready to start ttc until at least a year after my wedding, which would be this may (naively didn't stop to think I may not have a choice about exactly when id have kids like most people do!). Me and my husband always said we'd like a year off it before ttc too just incase. I didn't expect this flare as like you I was so well controlled for so long, and even had 9 months off meth before this flare, and now I don't feel in a position to start ttc until I'm more stable (its pretty impossible physically at the moment even if I wanted to! ). I also worry about how long it might take once we do start trying, because of the meds I've taken etc. I only recently learnt that NSAIDS can reduce fertility and was shocked! I've taken a hell of a lot of them!

I'm having very little effect from steroids at the moment and worrying about the long term joint damage as the flare goes on but I hate the thought of potentially harming an unborn baby with meds, especially after hearing stories like yours. I'm not willing to restart meth as in my eyes, ill eventually have to come off it again anyway and if its at least 6 months off it before ttc I'd have just as much risk of flaring again and being back in this same situation, only a few years down the line when I'll be older and even more at risk of complications!

I'm not willing to consider not having kids, its always been part of mine and my husbands life plan, we've been together nearly 13 years although we only got married last year. I also understand that the risk of passing arthritis on to your children is minimal and compared to some other diseases that are strongly genetic, that part doesn't bother me too much so i hope people wont judge me for being selfish in this way. Things also go very wrong for people with no genetic diseases. My sister in law had to abort her baby after the 20 week scan because of gross brain deformity that meant the baby would never survive, and as far as I know her and her husband have no known health problems. They do now have a healthy 4 month old boy though

Thanks again for sharing your story, it really helps

stickywicket

Years of NSAIDS never reduced my fertility. Mr SW only had to look at me

Cariad71 wrote:

I'm not willing to consider not having kids, its always been part of mine and my husbands life plan,

As someone who's lived with RA for a long, long time, I'd just suggest that life is much easier with it if one is willing to consider everything. In fact I've long advocated that the less flexible the joints the more flexible the mind must be. It really does help.

As for genetics, when I had my sons the thinking was there was no genetic element. If I'd been told there was I think natural optimism would have led me to have them anyway as I was always being told that a cure was just around the corner. That was 40+ years ago. My sons escaped but I look at my 4yr old grandson, who shows every sign of being as fanatical a sportsman as his Dad, and I know if he were to develop RA I'd feel devastated, and guilty.

There is a small genetic component (It's bigger with other auto-immune diseases) but a bigger factor seems to be smoking so that's one bullet you could ensure you dodge http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/heredity.asp

Cariad71

I suppose what I mean is I'm not willing to let arthritis take away from me the chance to have to greatest gift/pleasure in life (in my opinion!) of children. It hasn't stopped me doing anything in life so far such as pursuing my career and travelling, although I know I had the meds on my side then. Perhaps I'm a little in denial about the genetic thing, as my sister who has AS and I both have HLA B27, and my dad has ulcerative colitis which I've read is linked to the spondyloarthropathies. But I think lots of people have HLA B27 and don't develop any autoimmune disease. also if everyone with any genetically linked disease in their family history decided not to have kids just incase they passed anything on then most people wouldn't have kids, and the only kids born would be perfect....This is sounding like a good film story!

I've spoken to the lovely rheum nurse just now who advised to increase pred to 20mg for about 5 days, but weirdly, if it works she said try and reduce it again to 15mg or 15/20mg alternating? She is definitely an expert so ill follow her advice but I wondered why, is it that easy to become tolerant to their effects? They're being very supportive and going with the steroids idea, not pushing me to try anything else at all and gave me some hope by telling me that most of their patient when pregnant have gone into remission. She kind of suggested that when things do settle though, I need to 'get on with it' because I've been off meth for so long and effectively done the hard bit!

dreamdaisy

My parents were blissfully unaware of the genetic time bombs they were giving me because they both missed the health rubbish present in both families - this was back in the late 50s when the medical knowledge (and meds) were both pretty thin on the ground. After an utterly miserable childhood thanks to chronic eczema and asthma I deliberately decided, aged 16 and after an interesting chat with my GP, that I was not prepared to run the risk of spoiling an innocent's life. I don't regret it for one moment and felt further justified when the PsA kicked in. My life expectancy has been shortened thanks to all the drugs but, as it's not been much fun living my life, I am grateful for that. DD

cherrybim

You go for your heart's desire Cariad71.

My husband had/has cronic asthma, at his age of 71 I've lost count of the numerous times I've sat with him in ITU and now ICU.

Have any of our three children got asthma? It's a resounding NO.

All blessings to you. I found that my RA went to sleep when I was pregnant and after the babes were born peeps were only too willing to help.

My "boys" are now 48, 41 and 35. All healthy, save and except that they're all action men with resultant sports injuries

Cherry x

Cariad71

Thanks cherry

That's nice to hear. For now at least I'm certainly trying to stay positive, otherwise I don't think I've got a chance of getting through what could be a rough time without meds and with the challenges pregnancy/motherhood throws at you anyway.

Its nice to get some support/advice/encouragement from people who've recently done it/are going through it but I guess LV and the others who used to post on here are kept busy with their little ones these days!

Cariad x

sarah2012

I asked quite a few different docs about the risks associated with all my meds. General consensus was that the sulfasalazine was ok (i could have contined taking it throughout pregnancy but felt happier not) and meloxicam was not recommended, but didn't tend to hang around so as long as I stopped it quickly that was fine. I got switched to diclophenac while expressing. I'd had an infection in my foot and been on antibiotics and had a couple of weeks off my meds when I became pregnant, so exposure to the other drugs was fairly minimal. The humira was interesting - because it is relatively new there isn't much data on it, but apparently it has been given to women undergoing ivf as it reduces the chance of the immune system rejecting the embryo. However, again I didn't want to add in extra risks, and was stable without meds, so it wasn't an issue.
My lovely little boy has made a brilliant recovery, but we don't really have a long term prognosis. Hopeful that he won't need further treatment but it is still early days.
In terms of inherited conditions, my elder son is currently healthy with no concerns about arthritis. And it is helpful to recognise that medical treatments have improved drastically in the last 20 years - by the time our children are our age there may be a cure or at least much more efficient disease management. I wouldn't let fears of an unknown future force you into making a choice you might regret.