Starting a family/pregnancy...

gemmarh100

Me and my partner have decided to start a family, a very positive yet daunting decision We are a lesbian couple, so there are a lot of hurdles as it is We have decided that I will carry the baby, so I'm after advice about having RA and getting/being pregnant and birth (meds etc).

I have spoken to my Rheumy, who was very supportive, and has taken me off all my meds, except Prednisolone (steroids). Just wondered if anyone else has experience of coming off meds for pregnancy? How did it go? Did pregnancy affect your RA? I know everyone is different but it would be nice to hear everyone's stories.

Any natural/herbal tips may be helpful too....?

Take care,

Gem X

Chazmoore

Hi Gem,
My husband and I are also thinking about trying for a baby. I was diagnosed with arthritis 8 years ago. I'm now 33. I would be very interested to see the replys to your question. I am also excited but worried. I came off all my meds and just getting regular steroid injections but I've had constant flare ups. I don't want to give up on having a family but don't know how I am going to react being pregnant . Good luck Chaz x

stickywicket

Hi again, Gem and, Chaz, hello and welcome to the forum.

It certainly is a big decision. I made it twice (Then I made the decision 'never again' ) and my two experiences were vastly different. The first was a doddle as I went into remission: the second was a nightmare as I didn't. I also flared badly for far too long after both births and couldn't have coped without the support of my husband, Mum and Dad. The culprits are both disgustingly healthy men now with children of their own.

Gem, it's none of my business which of you gets pregnant but I do find it a bit odd that it should be you because, healthwise, it will be so difficult for you and there is also a risk of the baby inheriting RA ( between 1 in 100 to 1 in 30 See http://tinyurl.com/o7sl6jd That's according to Arthritis Research UK, a very reliable source.) Heterosexual couples don't have an option but, given that you do, might it be better for your partner to do the getting pregnant and giving birth thing?

There are many old threads on the topic of trying to conceive, pregnancy and the aftermath. There have been successes and failures and capitulations ie giving up and going back on the meds. Here are some and good luck both of you http://arthritiscareforum.org.uk/search.php?keywords=pregnancy&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search

gemmarh100

Hi, I understand what you're saying Stickywicket, but my partner had health problems too, which have much bigger chances of passing on the illnesses, so as mine is only 1-3% we decided with me. Also, I am younger and fitter so probably more healthy (in relation to conceiving) too. It was a hard decision though. My partner also works full-time and earns more money than I do, so we wanted her to stay in her job throughout the process too.

Thanx for the link to threads, I'll get reading, lol

We should keep in contact Chaz, go through the journey together What meds were you on before making this deicison? I am starting to feel coming off my meds a lot more now :roll: - 2 weeks since...Now I am only on steroids, but will probably ask my rheumy to up the dose on my next visit. How much steroids do you take?

Take care,

Gem X

Slosh

Just wanted to say that at the school where I work we did have a lesbian couple who decided to start a family, they have since moved away to be closer to family, but in our setting at least everyone was encouraging of them and treated them no different to heterosexual couples and made just as much fuss when the baby came on a visit. I remember once Sandie Toksvig being asked what her children made of having two Mums. She said her son said it was great as if one Mum was ill the other could look after him! Nothing to do with RA but just wanted to wish you both every success and happiness.

Chazmoore

Hi Gem,I was on embrel injection once a week. This drug was amazing when I first started taking it. I had really bad flare ups & as soon as I injected I felt relieve the next week. I came of the injection 4 months ago to get it completely out of my system because I was affraid if it would affect the baby. I now get a steroid injections every 8 weeks but my doctor thinks this is not a good idea as there are side effects. I am trying to only take anti inflammatories when really sore. The cold weather affects me big time. So I have had to take them. My doctor and rheumy have said that it's maybe not a good idea getting pregnant but I don't want to regret not trying. I wish you and your partner all the best x

barbara12

Hello Gem..
Sorry I wont be much help, but I do want to wish you both well for the future..I can only imagine how daunting it is to have to come off your meds.we do have LV on here , she had her twins and will be able to advise...hopefully she will see this..good luck...

LignumVitae

Hello, I did it and it is very very hard. I only managed a three month withdrawal because I struggled to hold things with steroids - I had injections every three weeks at the end of my three months. I was lucky and got pregnant quickly. I did spend those three months being very kind to myself - you can't expect to carry on living as if you have your arthritis under control whilst using steroids alone so your other half has to be prepared to shoulder a lot of responsibility and take on extra. I was very lucky, Mr LV did lots and also made sure I rested when I was trying to fight and not rest. After a week of a poorly child which has resulted in a tough weekend do be aware that looking after children is hard work - I've had a monster flare over summer and spent lots of time struggling. Sadly, children and arthritis don't respect each other so during the midst of a flare we've had a bout of scarlet fever, other ailments, teething and associated sleepless nights, tanrtrums and other such events. You need to have a partner who is willing to shoulder that burden. Mr LV and I have spent a while sorting out ways of sharing the load and now he does all the night time wakings/ sleeping in their room to settle them. We have twins so at times like this weekend, I take poorly twin to bed with me and Mr LV sleeps in the room with well twin who inevitably will wake more as she misses her sister. Mr LV leaves the house for work at 7am every morning and works some weekends so it isn't without sacrifice on his behalf and if I wasn't arthritic I dare say I would do more of the night carry ons but I don't. Being an arthritic mum is possible and is fun and wonderful but is also hard work and needs a supportive other half who possibly contributes more than the average other half. Hope that helps, feel free to private messsage me if I can be of more help (that goes for you too Chaz).

DebraKelly

For me i found this very difficult.

I came off everything 2 years ago, was on Meth and Steriods, I have RA.

After about 3 months I was in a lot of pain and could hardly walk.

After 6 months, I did fall pregnant, but suffered a miscarriage 8 weeks later.

I then when back on everything for a while, and was ok for a bit.

March last year I came off everything again, was a bit better this time, fell pregnant about 3 months later and unfortunately had another miscarriage again within the 8 weeks.

After my 2nd miscarriage we decided not to try for a family and I am now back on all my medication and doing a lot better but I was ill for quite some time, both physically and mentally.

But remember we are different and react to different suitations.

Please PM if you have any questions as its a very daughting thing!.

AnnaMilton

Hi Debra, I am sorry for your losses.

Chazz and Gem, I am in the same boat. Trying to plan a family and at the same time, couldn’t cope up with current medicines (It’s a war between your mental and physical needs, strange hun?). Though my current medicines don’t bring any hurdle to make me pregnant, I totally lack the confidence that I would be able to cope up with this pregnancy physically. I already have toddler, so it’s an additional angel to think of before making a decision.

I am have an appointment next week, where I am planning to have a long chat with my rheumy and then decide (based on my current RA status) whether to go for higher drugs - starting those means postponing family planning for another 2 years (I need to consider age factor as well, oh how I hate making choice!!!) or to start TTC. Like you said chazz, I don’t want to regret of not trying my best. Currently reading a lot about this topic online and trying to gather info as much as I can.

Will keep you in loop. Wish you both good luck and good health.

Anna.

Chazmoore

Hi Anna, I am glad I joined this forum because I felt I was the only one going through this situation. My husband is a great support but no one knows exactly how arthritis affects us unless you are going through it too. I am excited about getting pregnant but also anxious because I don't know how my body will react. I am fighting through the pain and stiffness because anti inflamatatories make it harder to conceive so I am trying to reduce taking these. It's unfair that we have to make all these decisions. I have cut my hours at work and applying for DLA. Hopefully I am successful. Did you have your toddler before being diagnosed with RA.Chaz xx

stlucia

Hello,

I blogged about my journey.... http://operationuptheduff.blogspot.co.uk/?m=1

Hope it helps

AnnaMilton

Chazmoore wrote:

Did you have your toddler before being diagnosed with RA.Chaz xx

Yes, My DS is very active, healthy 3 year old now. I was diagnosed around 1 year back after struggling with the symptoms for over 6 months.

Anna.

Lou001

I too am battling with a pregnancy related decision. I have PsA - my partner & I would like to start a family, however I haven't yet started on my medication (sulfasalazine)

I have been told that this is safe to take right up to getting pregnant, but I don't know whether I should start a family first and then take the medication, or take the medication for 6 months (to at least help bring my inflammation levels down) and then start a family.

Sucks having to make these kind of decisions

dreamdaisy

Sadly, none of you can have it all ways. As prospective mothers you will have a physical price to pay no matter what you do. You are fortunate that you live in an age where the meds are there to help slow the progression of the arthritis (and where there are meds for other auto-immune conditions) but I reckon this only helps to muddy your parental waters and make life more complicated. When I was conceived (back in the Dark Ages of the late 1950s) my parents had no idea what they were passing on because they were healthy, and remained so throughout their lives until late old age. When I turned sixteen in 1975 I had a chat with my GP (when genetics was in its infancy) and decided against having children.

To this day it is one of the best decisions I have ever made. Not once did my late Ma complain about her lack of grandchildren because she was racked with guilt about how I turned out. To me it was a no-brainer but it must be so much harder for all of you, living in the times that you do. DD

Lou001

Personally, I don't think my condition is a reason to not want to have children, especially since the risk of passing it on is very small.
This thing already makes me feel different to most 28 year old's, and denying myself of my maternal needs to want to have a family would only make me feel worse.
Its personal choice, I understand that people may decide to give children a miss, and I can understand the reasons why. I also understand it will be very difficult for myself and others with this condition to cope with the physical demands of a child, but its a challenge I am willing to accept.

I was just simply inquiring about what others in this position would advise, and what experiences they have had.

charleeh

This is a topic that I have given much thought over, I have lost many sleepless nights from it I can assure you - but like Dream Daisy, me and my husband have decided not to have children due to my condition.

I think a lot of it depends on the severity of your arthritis and the bucket loads of medications you have/are/will take(ing) that finally effects your decision to have children or not. When I think of having children all that fills my mind is the pain I go though

It also depends on how far your arthritis has progressed when you have them too, I would say if you want children have them before the condition gets bad and you are on heavy biological medications (like me)..... but then again, you might never have to have such strong medications - but do you want to take that chance?? I was only 17 when diagnosed and been on (in my opinion) too much serious medications to consider it now.

Most people I have heard from have had children, have been taking medications such as sulfasalazine and the various other pills before the biologics - and their children have been born healthy and happy. with no signs of our condition as yet (but all are still very young).

I have not heard from anyone who has had a child on biologics?

My choice is to foster slightly older children maybe 5 onwards and follow in my Auntie's footsteps of helping children in need - its not something I am ready for just yet, but I know thats the way i will go.

- its a difficult decision to make not to have children, especially when all your friends have them all around you and you can't even hold their babies as your hands are so weak and painful.... but if you find you can't have children it does make you look inside yourself a lot deeper, and look at what you want out of life, and what the meaning of it all is if you "leave nothing behind in the world" so to speak. But we are each on an individual journey in life and each have a different path to follow. We each have a unique purpose in life, some of us reproduce and some of us do not, simple. There's no point being negative about the situation.
Sometimes its all about acceptance of the condition and accepting the limitations it puts upon you at the end of the day, something that took me far too long!!

I wish all the aspiring mums to be all the best, - as I mentioned earlier, in my opinion its better to have them sooner rather than later before the disease progresses, as I feel there are too many factors to consider later on at the stage I am at.
Lots of love and wishes of good health . . . .
Charleeh x

stickywicket

Charleeh, that's a lovely post. My heart of stone is in meltdown I think it's a brave and wonderful decision you've made to foster children rather than giving birth and, in that way, using your own misfortune to help others. What a terrific way of looking at life...and at arthritis! You have a very wise head on your young shoulders. I wish you a happy, fulfilled life. You deserve it.

charleeh

Sticky

((((()))))

Cariad71

Having not been on here for quite a while, but thinking about you all often and having a quiet few minutes spare I thought I'd pop in and see how everyone's doing, so it's a complete coincidence this post was one of the most recent as this is something I've been going through for a while and was posting very similar things about a year ago, when I was feeling alone and hoping I could share the journey with other people!

Charleeh - you are very wise and your post also warmed my heart, you've done well to come to an acceptance like that, and you're right that it depends on many individual things including how severe your arthritis is and what your personal journey has been. I consider myself very fortunate that mine is relatively mild, and I've managed off meds for quite a while now, with one bad flare up which I had steroids into every oraface for but mostly remission.

Debrakelly I'm so sorry to hear of your miscarriages, what a bad run of luck you've had . my heart goes out to all of you.

St Lucia I found your blog really helpful and have recommended it to lots of people asking these questions! Hope your little one is doing well

A year agoI thought my main problem would be staying off the arthritis meds, which has been a problem at times, but after a year of being off birth control I've recently been diagnosed with polycystic ovaries which makes getting pregnant an awful lot harder (big shock to me as I don't have the 'syndrome' or symptoms at all, except non existent periods since coming off the pill). So I'm just starting down the rather stressful road of fertility treatment and still unsure if I'll ever be able to have a baby, especially with the threat of flare ups looming all the time and having to restart meds.

I guess what I'm saying is, im still in the very early stages of my journey, just getting pregnant can be much harder than you think, then you have all the battles LV mentions of how hard it is to look after children with arthritis (so sorry to hear you've been suffering LV . I wish you all the very best luck on your journeys and hope if you do come off your meds you get pregnant quickly and have a healthy pregnancy.

Take care xxx

stickywicket

Hello cariad. Lovely to see you again but I'm sorry the pregnancy path has not been a smooth one. I have a friend with polycystic ovaries. Long before I got to know her I realised there was an unusually long age gap between her two children (about 10 years). Then I discovered why. No fertility treatment back then and she did eventually manage it twice unaided. It's unfortunate that having arthritis is no guarantee that we will be immune from such stuff. I wish you success.

Cariad71

Hi sticky, and nice to see you too I'm sorry I haven't been around for a while, life is so busy and I've had other problems distracting me. But I think of you all often, this quirky little virtual network of lovely people is fantastic and you're all so supportive and accepting, especially when people like me just pop in and out over time

Yes it is unfortunate that we're not immune to other health problems as you all probably know very well! I remember DD has bad asthma for example. With my mum and both older sisters falling pregnant at the drop of a hat, I never suspected I'd have problems but life is unpredictable :roll:

I started off thinking I'd try 'holistic' therapy like acupuncture to regulate my reproductive system, before quickly thinking 'who am I kidding I have arthritis and could flare up any moment then it could be game over', so I've gone privately and started investigations and medication as I couldn't afford the long wait involved with the NHS. I'm hoping I don't have go go for full IVF but we'll see.

Best wishes xx

Slosh

Hi, she doesn't have Arthritis, but my daughter who does have polycystic ovaries and endometriosis hs just given birth to a daughter who she concieved while on contraceptive medication and being told she couldn't have anymore children. Hope things work out for you.

charleeh

Cariad71 I wish you all the best on your journey!

I guess one of the best things to do is to keep positive about the situation and keep the stress away - that way the stress won't cause a flare up at least!!

(easier said than done I know, but try a simple meditation a couple of times a week - it might help!)

best wishes,
charleeh x

Cariad71

Thanks everyone for your well wishes

Trying to stay positive, had counselling in work for stress management recently and she suggested techniques such as 'mindfulness' which is basically a type of meditation I think, so I'm trying it, it's a bit strange but it can't hurt!

Charleeh, I hope the fostering works out well for you if/when you do decide to go down that route. My mum fosters children and my auntie has always fostered and now has several adopted children. It can be very rewarding knowing you're helping a child in need

Take care xx

stickywicket

Try everything and anything. I hope it works