Printable View
Hi,
I was hoping if someone coud tell me what impact, if any, Autoimmue disorders on the females side has on HT. In particular I'm referring to Ankylosing Spondylitis (positive for HLA-B27 gene). Does it make any difference if the disease is active or not at the time of cycling?
Is there anything that can be done to minimise the impact when cycling?
If anyone can attach any links or refer me to any sites where I can read up on this further, that would be most appreciated.
Thankyou.
I have an autoimmune disorder- crohns. I have NO idea of your autoimmune disorder. I can tell you if my disease was active there is no way a doc wold let me cycle and it would be a huge waste of time and money anyway bc it's quite doubtful a pregnancy would stick. If our body thinks it can't handle a pregnancy it won't. Again I don't know your particular auto immune disorder but I would assume if its active its not a good idea.
Anyone else please?
Dr Potter??
I would ask Dr. Braverman on his forum. He is a reproductive immunologist and is an expert in this area. Immune issues can definitely impact success but I am only familiar with what I have and not sure about the issue you talked about.
preventmiscarriage.com is his website.
Sent from my iPhone using Tapatalk
I have been diagnosed with spondylitis recently and have wondered the same. I have considered having my embryo's tested for HLA-B27, but it runs in my family so much, I'm affraid all my embryo's will be affected. It wouldn't be a reason for me not to transfer an embryo, as the disease is very well treatable. I do know that low carb can have a great effect on keeping the infections low. You can googel on ankylosing spondylitis and Paleo for example. The theory is that especially bread causes a lot of problems for us patients. Since I have cut back on carbs, I have been feeling a lot better and have a lot less pain. Also low carb has great effect on ivf results as well. Are you currently taking any medication? I'm very curious to know what dr. Bravermann has to say about this. FX!
Quote:
Originally Posted by Dana-Alicia
It's a hard one Diana as not all AS suffers have the HLA-B27 gene anyway so there is no guarantee that even an embie without the gene wont have AS. However, I do have the gene and have wondered the same thing but after already having 3ds untested I don't think it would be a good idea (and its supposed to be less common in females).
It took me over 10 years to be diagnosed as the pain was off and on and mainly in my hips rather than my back. Since then (approx. 7 yrs ago) I've only had a couple of flare ups. I'm not on any meds at moment but I definitely agree that diet plays a HUGE role. Last year I was in a warmer climate eating very clean, very low carb / starch and going gym 5-6 times per week and no pain at all. Now not really focusing on diet but maintaining my weight and winter kicking in I have had regular intermittent pain. I need to get back on track!! I have had 3 MC, 2 of them prior to my diagnosis and am wondering if that could be due to my AS?? :(
The strange thing for me is that I don't know which side of family it is inherited from. I am one of 5 and no one else in my family has it that we know of (but they also aren't the kind to get things checked out where I am) but my mother does have back issues and I suspect it is from her but she thinks her back pain is from moving one time and hurting her back, but I don't think so!
I have an appointment with my Rheumatologist in a few weeks who I haven't seen since shortly after my diagnosis and back then he did say I only had a mild case (thankfully!!). I took meds at one stage but had to be off them for min 6 months prior to ttc and never went back on them. Never had any problem during pregnancy or delivery but did have a bad flare up after ds2 which I hear is not uncommon.
Ill let you know if I get any other feedback on other posts.
Yes, it's very common for them to take long on diagnosis. The damage needs to be seen on the scan and it takes years for the infections to damage the bones. My mom has it, my aunt, uncle (her siblings) my grandfather and two of his sisters. My eldest sister has been diagnosed just last month and my younger sister has started to complain about lower back aches. So for us it definitely runs in the family. But I was told by my rheumatologist that it usually doesn't, so wouldn't be surprised if no one in your family has it.
I have had a lot of problems during and after my pregnancies, I was in a wheelchair for a good 8 months, the pain was insane. But I've been taking painkillers now and since then I've been feeling much better. Can't take the actual NSAID's because of breastfeeding my youngest. But my dr did tell me it's better to take meds to stop the spine from deforming. And yes, we should work out a lot too! Something I'm not particularly fond off ;) But I'm trying to get in good shape for HT, so this is defo a problem I will tackle!
Hope you get an update on this issue soon :) But I'm sure it will be fine. I hope!
Oh no that sounds horrible! How old are u? It scares me sometimes but at others I don't think about it. I know I should be more vigilant with the meds but it seems the times its at its worse we are thinking about ttc :( I think ill focus on diet for now. My pain is like a constant ache but I can block it out, hence why I don't take meds often but I should but also worried about constantly taking nsaid's?? I am worse in morn n when going from sitting for a while to standing which doesn't happen often with 3ds to run after lol.Quote:
Originally Posted by Dana-Alicia
I'm 29 now. It's only during my pregnancies and a few months after. It's also my pelvic that get's unstable, so it's not just spondilytis. My mom has always felt better during her pregnancies and that's what my dr said as well, most women feel better when pregnant. But I'm not one of those unfortunately, which is the main reason for me having to wait before we go HT. My youngest is just a baby, he needs to be picked up and carried up the stairs etc. I can not properly care for such a young child when pregnant. So he needs to be a bit more independent, not need me so much. But we will get a nanny or an au pair by the time I'm pregnant, so i can rest and be asured my kids are taken cared off properly and they can still go out and do fun stuff. As I would only hold them back at the time :( But it's only 8 months, so I guess it's worth it in the end if it gets me my healthy little girl. Will defo be the last pregnancy for me, hence why we go ht.
You should take meds to protect your stomach when you take NSAID's. But other than that you should be fine. It's not a nice idea to pump yourself full of meds, but we really don't have much of a choice if we don't want to end up like crooked old ladies with a hunchback lol. And the mornings are always the worst, ugh sometimes I wake up at night and feel so stiff and sore I can't even roll over! Feeling old at those days! But yeah, also have 2 boys tor un after, so they can keep us a bit flexible for now ;)
Dana where are you planning to cycle?Quote:
Originally Posted by Dana-Alicia
This is the reply I got from Dr Braverman......
...We have had success with AS . But of course you need to be sure it is the AS that is the problem (but I do think that is most likely). I would need to get testing on you to see where we would need to focus the treatments. I would want to look at cellular and antibody profiles on you as well as a complete cytokine profile (serum and cellular). But I'm sure I can at least give you answers. At that point I would be able to recommend supplements as well.
If you would like my help please fill out the consult form on our website....
And here is the link, but you might have to join as a member to read the forum..
Miscarriage Questions: Ankylosing Spondylitis (HLA-B27 +ve) and IVF/PGD
Well at first I was convinced of HRC. I think they are the best. But the travel there makes it so expensive. I'm considering Farah in Amman right now. They are half the price, including travels. I'm just not sure, though decision! You? And when will you be cycling? I'm hoping to cycle in june 2015 or december 2016.
Oh just see dr. braverman responded. Are you going for those tests? I wonder why our own doctors don't do those type of testing on us? My rheumatologist only had the bloodtest done to confirm the HLA-B27 and I had an MRI where they saw the inflammations and dammage to my pelvis and spine.
Do you think your miscarriages are caused by AS? I sure hope not :( My rheumatologist never mentioned any of those things. My gyno said it was just bad luck when my daughter was still born.
I'm so sorry for the loss of your little girl, I cant even begin to imagine how devastating that must be. :(Quote:
Originally Posted by Dana-Alicia
I am now thinking that my MC could be related 3 out of 6 pregnancies isn't uncommon but its not exactly common either in a relatively young and healthy person. I don't believe that your little girl or that a stillborn would result from AS as I think it would impact far earlier on. Were you offered any testing to find out what the cause might have been?
I hope to cycle at HRC, I think they are the experts and the more I learn about things like this I want to deal with someone that understands and can deal with it too. To be honest I haven't had to see my Rheumatologist all that much but I too was confirmed via MRI (mine in my sacroiliac joints hence the pain in my hips) and also HLA-B27 positive but he did say a mild case (I just hope it stays that way!). I will be asking more specific questions at my upcoming visit:)
So glad Dr. B could/can help, I figured he would be able to! He is very very good with immune stuff and looks at the big picture. Just so you know, in order to be treated by him you have to cycle with him in NYC. He recently changed his policy.
Sent from my iPhone using Tapatalk
I dont think I will cycle with him, I thought he did skype consults though. I thought if I at least know more going in to it, it would be better. I am yet to have my consult with HRC as awaiting apt with IVF specialist in Aus for US's.Quote:
Originally Posted by michaela
He does a free 10 minute consult to determine if you should do the full consult. The full consult is $650, I believe, because he is a specialized clinic. Well he does normal cases as well but mainly specializes in that area. And if course after I typed this I realize that you are in Australia and I can't remember how he much he charges for those consults or if you have to cycle with him in order to get treatment. My guess is if you were working with a clinic there then he can treat you but he can't if you are working with another clinic in the US. I don't know that for sure though. Worth checking into though!Quote:
Originally Posted by willtherebe4
Sent from my iPhone using Tapatalk
Oh that's too bad you'd have to cycle with him. Of course I understand, but it would be nice to get an expert looking into this. But maybe there are more experts, poss even is Aus to get a good look at your case?
There are other reproductive immunologists in the US (not sure about internationally). If anyone is interested, PM me and I will give you a list. Some will treat patients without having to actually be seen by them and others will want you to be seen or like Braverman, will want you to cycle with them.Quote:
Originally Posted by Dana-Alicia
Michaela- ever hear of dr.kofinas? He's big on thrombophilias and caught it in me when no one else even tested for it! He goes on and on about docs not even testing for this stuff and can't believe the amount of miscarriages he feels could be totally avoided.
I guess I'd defo need a reproductive immunologist to check me out, as I've had thrombosis en pulmonairy embolisms a few years back :( I've been so ill and my pregnancies were so hard. I do get treatment though (injections to prevent my blood from clotting) but I've always feared for my babies and my safety. I'm not from the US though, so I should see a specialist in the EU or in Africa once we moved there. I did find a clinic in SA where they use acGH for medical reasons, so am hoping they can treat me or do part of the treatment. I was told SA is much more advanced than Europe medical wise. Strange, but I've seen their private hospitals, gah amazing!
Ah they're specialized in reproductive immulogy in 'my' hospital, gah! Well appearently they never felt the need to do more research on my body. I've been to a hemaetologist a few years back to look for any bloodclotting disorder, but they couldn't find anything to cause my healthproblems. I wonder if there is a link between AS and embolisms?
This is a great thread. I don't have the means for HT now, but definitely want to watch this thread because it is very insightful.
Well I thought I would update...
Had an appointment with my Rheumatologist over the weekend, with some good news and some pending ...
I didn't realise it had been 4 years since I last seen him so that was good in that I haven't had any major issues in that time. We discussed changes since then being MC #3 and DS#3. Discussed massive family history of heart disease / stroke and I mentioned a few other things that I wasn't sure whether or not applicable. Then I focused on whether my MC's are linked to my AS and that we were planning on TTC next year. I asked whether there is any diff as to whether you try naturally or ivf (didn't mention about the plan for IVF). He said there definitely could be a link and that it can affect implantation but more likely that it can cause the placenta to clot hence ending in MC, so no difference whether natural or ivf really. Even in my successful pregnancies I had early bleeds. I asked if it would be helpful to be on aspirin whilst ttc and he suggested that it was funny that I say that as that's whats often suggested but didn't go in to specifics.
He is testing me for ANTI PHOSPHOLIPID ANTIBODY SYNDROME :(
I have an order for blood tests of the following:
Lupus Anticoagulant,
Cardiolipin Antibodies,
B2 Glycoprotein 1 Assay.
I believe these tests are no out of pocket cost but not 100% sure on that until I get them.
He said I don't need to see him for 3 months but if these results don't also get sent to my GP I will definitely be going to see him much sooner.
So much to organise for HT anyway now this pending, I think I am feaking out a little bit :'(
You should ask if you should be on lovenox. Not just a baby aspirin.
So if I understand correctly, the AS can cause your placenta to clot? Which can cause infarcts in the placenta? But would that also mean you have a higher chance of thrombosis or clots on your end? Sorry you're having to do all these tests. I really hope all is well other than this stupid AS.
It is best to avoid trying to establish pregnancy during a flare-up. Most doctors would want a 6 month wait after a flare-up. It would be important to consider Clexane/Lovinox and/or Intralipid infusions as well. Immunosuppresive therapy with high dose steroids is fine during stimulation and might also be helpfulQuote:
Originally Posted by willtherebe4
Quote:
Originally Posted by Dr. Potter
Thankyou Dr Potter, I look forward to consulting with you once I have these results and pretesting completed. We were hoping to cycle in March 2014...
Hi hopeanddreamG, I hope you don't mind me asking this question not sure you could help in answering it, I have ulcerative colitis had for the last 5yrs in a flare and haven't been able to control it very well before that remission for 4 yrs before that 4 yrs flare but got pregnant naturally with a boy aged 11. I am on Mezavant xl and azathophrine to control it now its taken a good 6 months to calm it I am actually pregnant at the moment with a boy and only have 7 wks left a naturally pregnancy this is, I feel very blessed in that I have felt better than ever with this pregnancy not with my last son thou, and my sysmtoms are almost gone!! I don't want to get my hopes up incase I have a huge flare after woulds like I did on my last son who is 11. I emailed Genesis in Cyprus about doing ivf/pgd for a girl hopefully about 8 months after birth all being well and I am hoping I will be more fertile for it to work, I mentioned I had colitis and he didn't say anything about not cycling because of my health I don't think I am in remission as it feels like its there but no acting up if I am making sense, my consultant was hoping I would go into remission on Aza but then turned around said don't wait any longer just get on with it because of my age I will be 39 this yr. my question is I wil be paying for this out of our own pockets do you think it's l don't want to waste it if there is chance my colitis will get in the way have you been advised then to be in remission before you start ivf?? Xx
Hi, hope some body can help? I am new to this forum I am not sure how I can re send my above message to a doctor on pgd/ivf about cycling with my colitis still active can anyone help please thankyou in advance xx
I don't think any doctor would have you do a cycle if you are in a flare. I personally think you would be wasting your $. Did you mention to the doc you were actually in a flare?
I think after your baby is born you should try to get your disease in control and go from there.
If age is an issue perhaps you can do a retrieval then an FET when you are healthy. I think the chances of a pregnancy are greatly reduced by being in a flare.
Thankyou for your answering my question hopeandDreamG I think you are right about that, I am going to have to really spell it out and see what he says even though I told him about it, he didn't say anything!! And I haven't really been focusing on that problem I have been more worried of my age. I am feeling really well at moment I just hope and pray it stays this way I wish you all the best with your health and with your next cycle good luck :)
I just thought I'd update I got my blood results back and tested negative for the other immune conditions the rheumatologist was testing for so thats great news. Also my CRP was not raised and ESR was only mildly raised. Considering I thought I was in a bad flare I was really happy with that ;)
To my knowledge, AS does not affect pregnancy outcome as long as you are not on immunosuppressing medications. It is somewhat different than other autoimmune diseases in this aspect.Quote:
Originally Posted by willtherebe4
Love your profile pic!!!Quote:
Originally Posted by HopeandDreamG