Family Planning (pre pregnancy)

tazzy303
tazzy303 Member Posts: 4
edited 5. Jul 2014, 05:01 in Living with Arthritis archive
Hello All,

Hoping someone out there has been through what I am currently going through and can provide some guidance/reassurance.

My husband and I have decided to start a family, and so I have taken the initial steps which is to come off my medication for 6 months prior to even trying (I was on 20mg Methotraxate and 40mg Humeria). As a replacement I have been given Naproxen and Solphadol for pain relief.

It has only been 2 and half months since coming off the meds and it has been VERY tough all my joints have flared my knees, shoulders, feet, hands being the most painful more than anything I have experienced, its difficult for me to do the most simple things without the help of my husband, I have lost my appetite, unable to sleep, we have no physical relationship, and its becoming increasingly difficult to go to work. I am 28 years old but feel as though I am going on 60. Everyday seems to get tougher and tougher.

I had an steroid injection one month into coming off which i was advised by the nurse would keep me going for 3 months, but unfortunately that lasted a day!! Since then I have tried to see the consultant on NHS with not much luck they seem to suggest I quit trying or be put on other meds over the helpline (without even seeing me). I am so worried that I am doing some long term damage to my joints, and the pain is so hard to bare. We are now thinking of seeing a specialist privately but not sure if it is worth it are they going to say the same thing, has anyone else been through this?

Comments

  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Hi tazzy,

    Welcome to the forum if you've just joined. I found it only a few months ago when I was searching for the same sort of answers/support as you are.

    I'm the same age as you and in a similar position, although my arthritis isn't as bad as yours, I've never needed anti tnfs yet and was pretty well controlled on methotrexate and NSAIDS with occasional steroids. I'm trying to stay off meds at the moment to hopefully have a baby. I had a bad flare from September to may this year, and have tried to manage on steroids which I only stopped 2 weeks ago. I had IV steroids, IM depot into the bum muscle, into a joint and finally a long course of oral prednisolone. like you, none of the injected steroids worked for me as long as they said they should, even a course of 3 high dose IV 'pulses' lasted a week! The trouble is, without the other immunosuppressants there in the background the steroids are working on their own and have varying effects on different people.

    I suggest you keep on to your rheum to see you, they need to give you individual advice but I know some people do stay on some of the 'safer' meds if they can't control the arthritis with nothing. I was told the safest option was steroids but there are other drugs you can continue like sulfasalazine. Unfortunately no one can ever tell you a drug is 100% safe in pregnancy but they do have a lot of experience with some drugs that suggest they are safe. When I wasn't doing so well a few months ago I had these discussions with my rheum. It's complicated and a discussion you need to have properly with them in a consultation as far as I'm concerned not over the phone.

    Have a look at my previous posts as there were a few of us in the same boat. The other girls have gone a bit quiet recently but it's a topic that's come up on here lots over the years. If you also type 'pregnancy' into the search box it will show you old posts, and there have been some successful forum babies which is encouraging!

    Two girls on here did blogs which i found really helpful, one is 'operation up the duff' and the other was 'it's all about getting from a to b' just google them.

    I also recently bought a book by suzie Edward may who is an Australian author, it's called 'arthritis, pregnancy and the road to parenthood' and it does help deal with some of the feelings you get going through this. You can only order it direct from her website but she sends it promptly.

    I hope some of this is a bit useful to you xx
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Hello tazzy303 and welcome from me too. I'm sure cariad will be of more use to you than I will as it's 40 years since I was last pregnant :o I did 9 months on soluble aspirin alone and wouldn't like to do it again.

    It's an unfortunate fact that RA isn't going to just kindly absent itself for 12 months or so while we conceive and have babies. On the contrary, it will seize its med-free opportunity :roll: I think the rheumatology department are only being realistic when they suggest quitting or trying other meds (presumably steroids or sulphasalazine) and I don't see how a private consultation could come up with any other solution. This is what Arthritis Research UK say on the subject: http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/pregnancy-and-arthritis/planning-for-a-baby.aspx Interestingly, they caution the use of NSAIDS.

    I'm trying very hard not to be negative here but I really don't think there are any shortcuts. Our LignumVitae is a splendid example of positivity with her twins but steroids helped her through her pregnancy and they don't seem to have done much for you. It's a tough time for you and tough decisions have to be made. I wish it were otherwise.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    It's also worth mentioning, if you don't already know, that around 75% of women with RA get an improvement in their arthritis whilst pregnant although some seem to get worse/stay the same and it's obviously not guaranteed. My rheum told me that I'm less likely to get a remission as I've got more of the sero-negative spondyloarthopathy/ankylosing spondylitis type arthritis which shows less improvement in pregnancy.

    Unfortunately it's also common to get a flare after giving birth, which is something to consider when going down this route e.g. Would you have access to help to look after the baby if you flared badly?

    Certainly don't want to put you off as we've got to stick together but it's important to consider these things! Xx
  • tazzy303
    tazzy303 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you both for your responses. I have since had a call from my NHS consultant to arrange an appointment to see him though it is a few weeks away just glad I have one. Just hope it doesn't get cancelled!

    It is just so frustrating when they are so unwilling to see me it took 2 referrals from my GP to get the appointment, just want the reassurance that ok yes you are having a bad flare but your not damaging your joints. It's worrying when you GP see's you and tells you that you shouldn't be the way you are. :(

    We are aware there are other options other than me getting pregnant trust me when I say we have looked at all our options. But its just not the same, its something we have been planning for since we have gotten married and coming from such a big family we are reminded how much we want a child of our own all the time, but I will defo look into some of your suggestions its nice to know that i'm not the only one out there struggling thank you so much for taking the time to respond just being able to share with people in similar situations is a great help x
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi.
    I just wanted to welcome you to the forum and wish you the very best of luck. Sorry, I have no advice.

    Xx
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Keep going girl! I could have written this post back in 2011. I only managed a three month withdrawal from the meth. It's hard and you are doing so so well to be at 2.5 months. I got pregnant pretty much straight away and am now the proud mum to two crazily active nearly 15 month old twins. I knew I was pregnant the morning I woke up and sprung out of bed with no arthritis pain. Sending lots of wishes your way. Check about trying after three months if you are struggling. It's widely acknowledged that by three months you are meth free and that trying to hold on when your body is struggling isn't necessarily positive for your fertility. Keep going and be very kind to yourself xx
    Hey little fighter, things will get brighter
  • tazzy303
    tazzy303 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thank you all for your support. So I decided to book a private consultation as the pain has been unbearable and the outcome not quite what I hoped. Unfortunately due to my RA being 'off the charts' I have been advised to restart my medication and hold off on planning for a family until I have my RA under control and I am in good health again otherwise I risk damaging my joints :(

    So the last 3 months of agony has been for nothing which is frustrating but what was even more so that I do not need to come off my meds for 6 months, 3 months is enough and also that in those 3 months I can continue to take humeria (not methotrexate) and that they could have replaced my methotrexate with another substitute which as some of you mentioned in the previous posts instead of going cold turkey.

    It is a dissapointment but I suppose I wouldn't have known unless I had gone through this but cant help but feel disheartened by it all. Maybe I can try again next year using the method suggested by the private consultant can only hope it will work.

    Will be interesting to get my nhs consultants thoughts on this in a couple of weeks time.

    Thank you all so much for your comments
  • stickywicket
    stickywicket Member Posts: 26,278
    edited 30. Nov -1, 00:00
    Thanks for getting back to us but I'm sorry you didn't get the outcome you wanted. Clearly, though, if you are flaring badly, you need the meds.

    Please, please do ask your usual consultant about humira and pregnancy because this is what the NHS Guidelines say:

    the use of this medicine during pregnancy is not recommended
    if you have this medicine during your pregnancy, your baby may have some problems after birth
    you must not become pregnant while you are having this medicine, and for five months after you stop having this medicine. If you could become pregnant, you must use effective contraception or abstain from penetrative sex. You must contact your prescriber if you become pregnant, or think you have become pregnant, while having Adalimumab
    http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Rheumatoid arthritis&medicine=Adalimumab&preparation=Adalimumab 40mg/0.8ml solution for injection pre-filled syringes

    I hope, once you are in less pain and less fatigued, you, your husband and your rheumatologist will be able to decide your best course of action for the future. I hope all goes well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Oh tazzy I'm so sorry to hear this, i think it's what all of us going through this fear, that at some point it might get too much to bear and we have to go back onto meds. It doesn't mean you can never do it though and there are plenty of success stories out there.

    I may be at risk of overloading you with info here when you may well be feeling like you want to hear no more... But I know I like to have all the info I can and if you're well informed about things it might help you get the best out of your appointments when you do discuss this in future. I notice the BSR (British society for rheumatology, where the rheums get their guidance etc) are working on a a guideline for treating arthritis in pregnancy, as there is currently no official British guideline as far as I'm aware, and this is probably why they all give us such differing advice on it. Hopefully this will be published soon and there will be more solid info on it. When I was considering what alternatives I might need to try a few months back I did a bit of research and found some stuff you might be interested in. Although the official drug info from manufacturers will always say 'you should not become pregnant on this drug etc', this is because they can never do clinical trials on pregnant women so the drug company's will never say 'it's looking like this drug might not be as bad as we thought in pregnancy' because they don't need to say this (there's no money in it for them!) and they don't want to be open to litigation. there are many drugs that are used in pregnancy if they have not shown a definite harm (such as mtx) and the benefit of continuing them outweighs a small risk.

    This is from the BSR guide to safety of biologic therapies;

    "Adalimumab and infliximab are IgG antibodies and as such cannot cross the placenta in the first trimester [188]. Therefore, it would appear to be entirely safe to administer them to the mother during this time [189]."

    The arthritis research website is excellent if you've not used it, it has a section on arthritis and pregnancy and you can order a hard copy of the booklet (I picked one up at my rheum appt). This is taken from it;

    "Exposure to biological therapies and newer immunosuppressive drugs is building. For instance, in the UK the British Society of Rheumatology (BSR) is gathering information on over 12,000 patients treated with adalimumab, etanercept and infliximab in a biologics registry (called the BSRBR) to examine the safety of these drugs. Information from this registry on patients who continue pregnancy and breastfeeding while taking these drugs will allow doctors to better determine their safety in these circumstances. There is, however, still an urgent need for studies clarifying the risk of anti-rheumatic drugs during breastfeeding and in men trying to father a child."
    - See more at: http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/pregnancy-and-arthritis/research-and-new-developments.aspx#sthash.xdfp1qMi.dpuf

    It also tells you about the relative risks/safety of the DMARDS;

    http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/pregnancy-and-arthritis/drugs-pregnancy-and-breastfeeding/dmards-and-pregnancy.aspx

    You may not feel like looking at this stuff now but maybe you will again when you feel ready. I'm also by no means an expert I'm just telling you what I found when I researched it a bit. Hopefully your rheum will give you a better plan next time that means you've got more chance of success. Its a good idea to use the time to prepare yourself for pregnancy in other ways, for example if you're on the contraceptive pill/injection etc, I never thought about the fact that they can take a long time to properly wear off and you cycles can take ages to return to normal, some people don't have a period for a year after coming off them! I was on the pill 12 years and only recently stopped, so I'm all over the place! You'd obviously have to be careful and make sure you use other reliable forms of contraception, esp if you're on mtx, but it could mean you don't have an additional delay when you decide to try again.

    Also, maybe focus on enjoying the things in life you can't once you're pregnancy/have kids, like plan a nice holiday or just enjoy weekends away, ad hoc meals out etc! My sister constantly reminds me to enjoy these things while I can!

    I hope you keep in touch on the forum, it's good support for all the problems arthritic life throws at you, not just family planning! Take care of yourself xx
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
    Ps. I can't bear apostrophe abuse and I didn't write 'company's'' the iPad did! Silly iPad! Xx
  • barbara12
    barbara12 Member Posts: 21,107
    edited 30. Nov -1, 00:00
    Hello tazzy303
    Sorry I don't have any advice but I want to add my support and hope that things work out for you ..I really do wish you well...and dont forget we ar4e always here for you to let off steam..xx
    Love
    Barbara