Coming off methotrexate to concieve?

louiserichard · 2. May 2010, 12:39

My rheumy put me on sulphasalzine in the view of coming off the methotrexate once it kicked in. It hasnt worked (been on it 6 months). He said there is nothing else I can try thats safe to concieve on and basically thats its - like it or lump it.

I was treated with steriods for a long time as a child so he said it wouldnt be good on my bones for me to take them again so thats out.

He said either I carry on as I am and don't have a baby or I just stop the metho and un do all his work and probably cause myself a lot of pain.

I felt I had no choice as we really want to start a family (we worked hard and got our own house etc and the time is finally right for us) so I stopped the metho in the week with the view of waiting until i'm safe to try. I am in agony already. I have to work full time and don;t know how I will cope. I dont know what to do! My husband said we should go and see a private rheumy but we can't really afford this - seems unfair.

louiserichard · 2. May 2010, 12:43

Has anyone else expereinced this? There is no other rheumy at my local hospital that I can see instead so going private would have to be in another town which we are prepared to do but don't feel we should have to. I just don't feel like he is looking at the whole picture...

gickygawky · 2. May 2010, 13:31

louiserichard wrote:

Has anyone else expereinced this? There is no other rheumy at my local hospital that I can see instead so going private would have to be in another town which we are prepared to do but don't feel we should have to. I just don't feel like he is looking at the whole picture...

Hi Louise,

I saw my Rheumy 5 weeks ago and stopped taking Mtx with a view to conceiving sometime in the near future. I am also on Enbrel so I will be coming off that on 30th June and 'was told' that the only option I had was to go onto steroids( despite not being effective in the past)until after the pregnancy.

When I discussed our plan it was met quite abruptly by my Rheumy and I get the feeling that I am being frowned upon for wanting to have a family of our own.

I don't think that my Rheumy is looking at the whole picture either and is only focusing on the parts of my case that are of interest to him. I also don't think he understands what a difficult situation we are in and how it has been carefully thought out and planned as much a possible to avoid 'undoing all his good work'.

I go back to him on the 30th June so it will be interesting to see the reception I get. It's so worrying going off the drugs that keep me mobile as it is without being unsupported by my Rheumy. If necessary we would consider going privately to get the right advice and treatment. I started out that way and it was very beneficial.

I wonder what other people's experiences have been?

Good luck with your plans - I would be very interested to hear how you are getting on if you have the time.

Arna x

louiserichard · 2. May 2010, 13:50

Yes I feel like we are being frowned upon too... They don't understand that sometimes there is more to life than simply having the arthritis under control.

I've wanted a baby for years its not something that we suddenly thought up or rushed into. I'm really scared about the whole situation with my drugs etc etc and my rheumy just basically made me feel awful like there was no hope etc - I was holding back trying not to cry and when I got out I just burst into tears. I often think that through all their training etc they actually don't really understand arthritis.

Its interesting that your rheumy said you can only safely take steriods in pregnancy. My rheumy told me sulfasazine, hydroxychloroquine and azathioprine are all 'ok' not 100% without risk but to be used in pregnany when the benefit outways the risk. However I only got on with the first (although it doesnt seem to be working).

louiserichard · 2. May 2010, 13:53

I really don't know where to turn from here. I hope your rheumy is helpful at your next appointment.

I think I am going to go and see my gp to see what advice he can offer and discuss with him if I can be seen by another rheumy anywhere or if I can be referred for a private appointment.

If I get any good advice I will post it to let you know... it really shouldn't have to be like this thou. I feel like i'm in a very dark tunnel without a torch.
x

elnafinn · 2. May 2010, 13:59

Hi Louise

There are a couple of threads about metho and TTC on the Young Peoples zone on Pages 1 and P4 if I remember rightly on having a very quick look.

I am sure there is one on the Living with Arthritis zone too, but a little while back.

I do wish you well with this and I am sorry to hear that some rheumi's cannot see the wider picture. I am sure there are some that will understand though but they may be few and far inbetween. I would think a female rheumi would understand far better.

Luv
Elna x

gickygawky · 2. May 2010, 14:00

I think the reason I am not being offered the other drugs you mention is because they are not known to be as effective for my form of arthur. I have heard however that these drugs are available for other people during pregnancy.

Try not to be disheartened by your Rheumy although I know it is easier said than done. Instead try and think of all of the success other people have had in situations such as this. There is defiantely hope for both of us - there are so many women out there who have arthritis and have also managed to have a family. It may not have been an easy ride but they did it - and if they can we can, right!

I think the best thing I can do is arm myself with as much knowledge as possible about my situation so that if I do come up against problems later down the line such as lack of support etc I will have a better idea of how other people overcame the same obstacles.

A x

louiserichard wrote:

Yes I feel like we are being frowned upon too... They don't understand that sometimes there is more to life than simply having the arthritis under control.

I've wanted a baby for years its not something that we suddenly thought up or rushed into. I'm really scared about the whole situation with my drugs etc etc and my rheumy just basically made me feel awful like there was no hope etc - I was holding back trying not to cry and when I got out I just burst into tears. I often think that through all their training etc they actually don't really understand arthritis.

Its interesting that your rheumy said you can only safely take steriods in pregnancy. My rheumy told me sulfasazine, hydroxychloroquine and azathioprine are all 'ok' not 100% without risk but to be used in pregnany when the benefit outways the risk. However I only got on with the first (although it doesnt seem to be working).

elnafinn · 2. May 2010, 14:06

I have bumped up the pregnancy and arthritis thread for you both.

Hope there is something in there to help you.

Luv
Elna x

louiserichard · 2. May 2010, 14:09

Yep you are right that we need to stay positive. I do try to its just hard sometimes as i've been trying to get off of it for 6 months already now - I am scared too. I was doing really well on my methotrexate you wouldn't even know there was anything wrong with me - however because of all this I stopped taking it on Thursday and already i'm really sore. Its not meant to stop working that fast!!! it takes months to come out the system so I am just worried how i'm going to end up after its come out of me fully that i'm going to be back in a wheelchair or something (my RA effects every single joint I have apart from 2 which have been replaced).

We can do it thou you are totally right. Lots of other women have, and have gone onto have healthy babies.

louiserichard · 2. May 2010, 14:10

elnafinn wrote:

I have bumped up the pregnancy and arthritis thread for you both.

Hope there is something in there to help you.

Luv
Elna x

Awww thanks so much Elna - Now that was a BIGGGGG post! been reading for ages has helped so thanks.

jenzie06 · 2. May 2010, 15:27

Hey
Sorry to hear your rheumy has been less than helpful. I came off leflunomide a year before TTC. I was working but had to stop during the year off because I couldn't cope with it all. Financially it was really bloody difficult but it was the best thing I could have done as I was able to manage the pain more effectively. I was doing voluntary work for a couple of hrs a week when I felt like I could cope.

I've been taking steroids throughout the pregnancy (I was due last week but baby is dragging his heels) but was told I could take other drugs like hydrox and sulfa but then its not necessarily possible to do things like breastfeeding. Pain management is difficult - trying to cope with just paracetamol is almost impossible after being used to taking morphine. However there are options - opiate based pain relief inc codeine and morphine are possibilities but they have (like the hydrox) consequences.

I would really recommend getting a second opinion. Either ask your GP or rheumy for a second opinion.

I don't know about you but I would not let this bloody disease (which dictates a lot of my life) decide if we were to have a family.

Best thing you can do is find a different and supportive rheumy. They don't always have a magic wand but supporting your decision is important.

Really good luck with everything - don't give up!

cthornley · 2. May 2010, 16:07

Jenzie is right that it really helps if you can get a Dr on your side. You should try to get a consult with another Rhemy (its rare to only have one in your health area...you might have to travel a bit but you are within your rights to see someone else) or at least get a supportive GP, also once you get to where you want to be ask to be seen by a specialist obstetrician (mine was a godsend)
You mention that steroids are not an option due to prolonged treatment with them as a child.....could you not ask about bone therapy treatment (usually offered to those who have bone density issues ) which should help with this and may give you a chance with steroid treatment again .
Steroid treatment is the safest and easiest way to come off mtx.
It was the only way that I managed to conceive...as you i was doing well on MTX but TTC and pregnancy (when my RA actually got worse) took their toll and there really was some low points where I thought what the hell was I doing!!!
I feel for you ....I was only off MTX for 3mths before TTC and thankfully was lucky in conceiving at 6mth but that was the longest period of my life and this is one of the reasons I am reluctant to try again even though my husband and I would dearly love a 2nd child.
Unfortunately you really need to talk to a dr about your medical options although we can all offer you empathy, sympathy and suggestions. I have found that over the years if Dr's don't tell you what you want to hear then just keep bugging them until they really have to take notice.
Good luck and please do not hesitate to contact me if you want to talk more
Chrissie

sarahw · 3. May 2010, 05:56

Hi I am sorry you are having problems with your drs. It sounds like he cant be bothered to give you alternative medicines. I had my son 17 years ago I wasnt then taking MTX but was on steroids i am sure it would be ok in the short term (im still on them) to take a small dose of steroid. Ask for a second opinion at your Gps. I went to a hospital that had a foetal medicine department and understood my RA and medicines and the care of babies in the womb etc. Just remember if you want to start a family it is your right and get as much help in doing so as you can. There are loads more Drs out there to help you and be willing to do so, good luck and do not give up.
best wishes sarah

dreamdaisy · 3. May 2010, 07:45

Decide which is more important then do it. Stop havering and dithering, just do it. The more you think the more confused you will become. DD

louiserichard · 4. May 2010, 13:32

Hi Jen

Aww congrats - I hope you don't have to wait too much longer - Let me know how it all goes. Are you expecting a boy or girl or don't you know yet?

I have had my hip replaced and have limited movement so i guess that if i'm ever lucky enough to get pregnant I will have to have a cesarean but my rheumy couldn't tell me. Are you having a natural birth?

I know what you mean about having to give up work. I am full time and really find it hard.

I won't give up thou - don't worry, I have got through so many things so know I can do this and inspiration like you proves to me that its def do'able

louiserichard · 4. May 2010, 13:45

Thanks for your reply and kind words Chrissie.

I didn't realise I can request to see another rheumy in my area even if its at a different hospital. I've been with the same rheumy pretty much all my life. I think thats where the main issues are. He has seen how far I have come and how well I have responded to methotrexate that he basically doesnt want me to come off it. However I know that if I don't start a family now i'm going to get too old.

I hadn't thought of bone density scanning but I am going to request it as I know how much steriods have helped me in the past and it would help me to know that I can have steriods as a 'back up' as/when needed to get me through.

We are going to see the gp and try and get a second opinion.

You mentioned that you saw a specialist obstetrician. Were you referred once you were pregnant or before hand? Basically once this methotrexate is out my system we are going to start trying. I've not even been given any clear advice on when is safe thou - my rheumy said 3 months from stopping the metho but I'm guessing he means cycles rather than just waiting 3 months?
I also assume I need to take folic acid at some point as the suslfasazine i'm on stops my body from absorbing but I haven't been told when or how much to take. I just want to have it all clear in my head so that I know i'm doing the right thing.

cthornley · 4. May 2010, 16:43

louiserichard wrote:

You mentioned that you saw a specialist obstetrician. Were you referred once you were pregnant or before hand?
my rheumy said 3 months from stopping the metho but I'm guessing he means cycles rather than just waiting 3 months?
I also assume I need to take folic acid at some point as the suslfasazine i'm on stops my body from absorbing but I haven't been told when or how much to take. I just want to have it all clear in my head so that I know i'm doing the right thing.

Hi i was referred to the specialist obs once i was pregnant but its just worth bearing in mind now so you don't forget to ask about it once it gets to the exciting bit

I think its actually 3months not 3 cycles as it refers to getting the drugs out of your system rather than having anything to do with the actual conception.
Even if you weren't taking sulpha (i'm not sure that this is actually a folate depleater, mtx is tho) you should take folic acid as your body is low on this from being on MTX i was just prescribed the same dose as I had been taking when on MTX (5mg) and just kept taking it without the MTX all the way through from stopping to giving birth. This is a massively bigger dose than usually prescribed to pregnant women and is just precautionary.
I hope that helps - any other questions please just ask , my son turns 2 at the end of the month so the whole experience is still very fresh in the front of my mind
Chrissie

dreamdaisy · 5. May 2010, 02:35

Nobody ever knows that they're doing the right thing. We can't tell you what will happen - nobody can. Make a decision. Once you have you shoulod feel a little better, and much clearer in your head. DD

dutchess · 5. May 2010, 03:10

louiserichard wrote:

My rheumy put me on sulphasalzine in the view of coming off the methotrexate once it kicked in. It hasnt worked (been on it 6 months). He said there is nothing else I can try thats safe to concieve on and basically thats its - like it or lump it.

I was treated with steriods for a long time as a child so he said it wouldnt be good on my bones for me to take them again so thats out.

He said either I carry on as I am and don't have a baby or I just stop the metho and un do all his work and probably cause myself a lot of pain.

I felt I had no choice as we really want to start a family (we worked hard and got our own house etc and the time is finally right for us) so I stopped the metho in the week with the view of waiting until i'm safe to try. I am in agony already. I have to work full time and don;t know how I will cope. I dont know what to do! My husband said we should go and see a private rheumy but we can't really afford this - seems unfair.

I totally understand where your coming from as I went through the same thing July to Oct last year and it was sooo tough mentally and physically. I came off methotrexate with support of rheumy with steroids as backup. Ended up on 40mg of steroids and still not controlling condition and off work with bed rest. Finally had to give in and go back on methotrexate in October. Rheumy now trying me on plaquenil with methotrexate in hope I could remain on plaquenil but not really doing anything for me as have been off methotrexate on/off for last few months due to probs with wbc. All looks very hopeless. Rheumy/gp also advised if \i was going to go through all this again then I'd have to give up work which financially is not viable. I think you really should try to do things with the support of your rheumy/gp I'm still not back to the place I was last july before coming off meds and I only came off methotrexate for nearly three months. I think I'm one of the abnomolies though as alot of people out there seem to be able to manage off meds and conceive think it just depends on your condition. There's loads of positive stories out there. Me and hubby would love a baby but at the moment we're just trying to get my health back to somewhere manageable. Your welcome to private message me if you want to chat more. When I was going through the same thing last year I couldn't find anyone who had gone through the same thing. It all focuses around infertility etc. Wishing you well and sending positive vibes.
Take care
Luv Kelly

louiserichard · 5. May 2010, 13:15

dreamdaisy wrote:

Nobody ever knows that they're doing the right thing. We can't tell you what will happen - nobody can. Make a decision. Once you have you shoulod feel a little better, and much clearer in your head. DD

There is no decision to make dreamdaisy - i've already stopped my methotrexate we know that we want to try for a baby. Its more just getting advice on what I should be doing and what specialists others have seen to help and get advice.

louiserichard · 5. May 2010, 13:24

Hi Kelly

Thanks for your reply. Did you they make you come off the methotrexate without being on anything else other than steriods as back up? Thats scary! They know my joints wouldn't cope so thats why they started me on the sulfasalazine last november in preparation for coming off the metho. I don't know if the sulfasalazine is working or doing anything thou (hard to tell i guess as I get good and bad days still) I also take meoxicam which I personally find works wonders (if I don't take it i def know about it!) I've been told I can take sulfasalazine throughout pregnancy and it should (hopefully) be ok. Meloxicam I can take for the first 3 months but then they said I will need to stop it. I am hoping pregnancy will take away my RA and I will be ok to stop it but who knows i'm not going to worry until/if it happens.

I am sorry to hear you have been through so much with it all. Its really hard isn't it. You will get there thou, don't give up. Hopefully the new meds will calm your joints and you will be able to look at coming off the metho again. Message me whenever you want - maybe we can get each other throught it!

dutchess · 5. May 2010, 13:48

Yeah rheumy just took me off methotrexate after I'd been on it for nearly 5 years with nothing else and I was left with just my painkillers (Rheumy seemed very laid back about it all as if it was gonna be a walk in the park so totally didn't expect how I reacted to it all). Steroids were then introduced when I started flaring. GP thinks in hindsight it should have been done gradually but also seemed to have the same attitude as your consultant (if steroids don't work then you'll have to give up on idea of having baby! If only it was soooo simple to switch off your emotions). Consultant is more positive and giving this plaquenil a go see him again in four weeks. I'll have to ask my consultant about 'sulfasalazine and 'Meloxicam' as thats not been mentioned. I have a mixed connective tissue disease so have ra/sjogrens and cutaneous vasculitis so a bit of a mixed bag to manage. Methotrexate has never really managed my condition however I'm now taking the injection form and its become apparent through my sudden drop in white blood count that my body probably wasn't absorbing the drug properly in the tablet form so the injection may be the way forward if my wbc continues to behave itself. All very complicated and still no light at the moment. Think you should defo speak with your gp as at least they'd have a more holistic view of things and then decide if you want a second opinion from a rheumy.
It seems like you've got some good back up with meds to fall back on in adsence of methotrexate.
Take care
Luv Kelly

louiserichard · 5. May 2010, 14:10

Hi Kelly

Out of interest how long was it from stopping the methotrexate to when your pain kicked in and you started to flare?

My rheumy couldn't tell me how long it would take. He told me to just stop taking the metho rather than reducing but I must admit I started reducing it myself at the start of the year and have managed to halve it myself over the last 4 months (I was on 20mg - now on 10mg which I just stopped taking last week) so I am hoping this will help stop a flare. I would carry on doing it this way but I am getting impatient!

The sulfasazine (from what I can gather) works in a similar way to methotrexate. Meloxicam is a nonsteroidal anti-inflammatory drug which I was on anyway.

My rheumy said that Hydroxychloroquine and Azathioprine can both be used during pregnancy so there are a few other drugs if the one you are going to try doesnt work. I guess all come with risks but the way I see it is that it would never be possible for me to go drug free so its the only way to do it.

dutchess · 5. May 2010, 15:08

Thanks for info must make a note of these other meds to mention to rheumy when I see him in four weeks. I was off methotrexate about two months before I noticed any ill effects. I felt fantastic for the first two months off it then I guess it had gotten out of my system and things started to kick off. It sounds like you've done things really sensibly with gradually reducing it and then having other meds to back it up. Keep me posted on your progress. Hopefully I'll have a clearer picture after my june appointment.
Take care
Luv Kelly

louiserichard · 5. May 2010, 17:40

Fingers crossed for your June appointment. I'm sure your rheumy will be able to come up with the right drug for you in terms of pregnancy etc. I know a lot of the time they don't understand but I think we just have to try and stay strong and push for what we want.

I thought it would probably be around the 2 month mark... I am scared about how i'm going to be once the methotrexate is out my system but the thought of a baby keeps me going and if I get in too much pain I will have to be put on another drug on top of the others but trying not to worry about it for now.

Keep in touch.

tkachev · 6. May 2010, 04:24

I was on just sulfasalazine throughout my last pregancy in 2003. As soon as she was born had a massive flare and then started on MTX for the first time.

Good luck
Elizabeth

Coming off methotrexate to concieve?

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