Immunology and Recurrent Pregnancy Loss
I’m definitely no doctor, but I see a lot of them, so I thought I’d share my newest learnings.
I’ll start with the back story – I grew up being told I had exercised induced asthma, because every time I played soccer or ran I ended struggling to breath. Asthma runs in my family (in fact, my sister nearly died of an asthma attack as a child, and ended ups ending a few weeks in intensive care fighting for her life). So, given the family history, and the fact that my breathing problems occurred when I was exercising the pediatric doctors just put 2 and 2 together to get there version of 4.
I was a pretty active kid, so this sucked, but was controlled with inhalers. No big deal, at least not compared to my sister.
While, as an adult, I moved cities and started having problems just being alive. This completely sucked. So, my doctor referred me into an immunologist. The wait time is normally 2 years without being in an emergency situation. But, I got lucky, and a new doctor opened a practice in our city. I got an appointment within a few weeks!!
Well, very quickly, this brilliant doctor figured out that yes, I did have a type of asthma, but it was not exercised induced, rather is was allergic asthma. Turns out, I have an incredibly sever reaction to Texas blue-green grass – you know, the stuff that everyone plants in the yards, that is not natural, at least ts not natural where I live.
So, I did 4 years of allergy shots to build up a resistance to grass. 1 shot per week for 17 weeks followed by 1 short every 4 weeks for up to 5 years. This was no small commitment!
Once we started trying for a family, we decided to reduce the strength of the shots, so they were less potent. The shots, are perfectly healthy for pregnant women and the baby and in fact may provide long-term health benefits for the baby. However, we dropped the dose because in the rare case that I had a reaction they would have to pump be full of drugs that would likely kill the baby. So, being responsible parents, we dropped the dose to be safe.
Anyways, after our first 3 miscarriages, I decided I needed to stop the shots altogether. I decided enough was enough, and what if there was a link, and this was the problem? Well, 2 more miscarriages later I am quite confident, just as my doctor was the entire time, the shots were not the problem.
But, to the point, I saw my immunologist again this week. We talked about the fact that my grass allergy is back and annoying me (although, better than it was before the shots), but we also talked the recurrent pregnancy loss (RPL). There is a lot of suspicion out there in the world of Google, that RPL may be linked to some sort of an auto-immune reaction. Of course, the RPL tests, including those for auto-immune diseases, say that we are perfectly healthy. But, I wanted his opinion, as an immunologist, on what else could be going on. And, since I already had an in to see an immunologist without a 2 year wait or choosing to go out of our country for more expedient treatment, why not take advantage of it? So, here is what I learned:
- He confirmed, that we know that I have a strong auto-immune reaction to allergens and foreign substances in my body. This has been proven with my reaction to grass and with my hypothyroidism.
- We need to get my current allergic response back under control. I am using multiple nasal rinses, and gel’s – oh what fun. I should mention here that I despise spraying anything into my nose, I may hate it more than anything else in the world. But, I’m on a strict regimen to try to clean out my sinuses and help relieve the irritation.
- They believe that there is a link between gluten and auto-immune reactions. In fact, it’s less the gluten specifically, and more the herbicides used on our wheat crops. So, if this is occurring within me, then my body is fighting foreign substances and may be choosing to fight the placenta when it develops as well. There is not enough data on it, and its weak science at best. But, as he said, it won’t hurt to try going either gluten free or going purely organic or both. He made it clear, that it is not a gluten allergy, rather this is about quantity, and so I can still use our toaster that has gluten in it, but just don’t eat gluten bread slices. So, time to bring on the expensive food.
- IVIG – Google this. Again, it has very weak science to say it will work with RPL, well, it actually has virtually no science. But, what it does have is the knowledge that it will improve my health as it reduces the ability for allergen anti-bodies to attach to cells, because there will be more healthy cells in my body completing to attach at the receptor sites (okay, this one is very science based for me, so forgive me if I have used a few words inappropriately). So, theoretically, it should help to support a healthy pregnancy. But, there’s a catch, and it’s a pretty big one. It can only be administered in hospital, another doctor with hospital rights would have to approve it knowing that there is little science behind the link, and without approval it would cost us $7,000 per IV treatment, and I would have the treatment at least once per month, and potentially twice per month, for about a year. So, my basic math says that would cost us $84,000 – $168,000. Ouch! But this doesn’t matter because without the aforementioned medical approvals, I couldn’t get it anyways in this country, even if I were willing to pay out of pocket (sort of like chemo-treatments, you cannot have them just because you want them – although I’m not sure why you would, but anyways). So, even if we decided we were made of money and could afford this treatment (which we absolutely cannot), we couldn’t have it. But, he may be able to make this happen, if our RE is on board. It’s a long shot to say the least.
- Xolair is for those with allergic asthma. This product is about $1000 per month, and is rarely covered by our medical benefits. In fact, although 5 years ago I was viewed as an ideal candidate for this treatment, we were unable to get approval. When we were unsuccessful and decided not to pay out of pocket, but to do the allergy shots which were covered. But, the catch with this one is that we can choose to use this treatment without extensive medical referrals if we are willing to pay for it out of pocket. Again, no guarantees it will work, but it definitely won’t hurt.
- He also suggested a low dose steroid during the first trimester. He was leery about this one, but it might help bring all the allergens in my body under control, which would give the baby a better shot at making it.
- But, here’s the most amazing part – he is going to do a lot of reading, and is sending a letter to my RE. He wants to coordinate my medical care between the two of them, if the RE is open to it! So, assuming we don’t end up pregnant sooner, when we see our RE next for a scheduled check-in in September, I am following up with our immunologist a few weeks later. If nothing else, I am happy to have 2 awesome doctors looking into this and trying to figure it out. If we get pregnant before September’s planned check-in, then we will obviously see both doctors sooner.
Although, I don’t have any answers today, I’m pretty excited to know that I have another awesome doctor on my side. Here’s to hoping with a bit more support, we can make the next pregnancy stick.
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Keeping fingers crossed for you! Infertility is hard enough without additional medical situations complicating things. I hope it all gets sorted!
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Thanks so much! We definitely hope it all gets sorted out as well! 🙂
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This is great news! I *love* when doctors work together. They know a lot, as individuals of course, but it takes so much work to become a specialist in a tiny field of the body, and the body needs a much more holistic approach. I’m so glad they will coordinate your care. And just a quick PS about the price of GF food – you do *not* have to spend any extra money, I promise. GF bread from the store freezer is full of preservatives and additives, and isn’t good for you – just because it says GF doesn’t make it less processed and this drives me crazy about some of my dear well-meaning friends 🙂 You might want to check out Shauna Ahern’s blog glutenfreegirl.com – as well as her cookbook Gluten Free Girl Every Day. I am not gluten-free, I should say, but I try to eat whole foods that are delicious, and her cookbook is awesome, even for non GF’ers like me 🙂 Good luck to you!!!
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Thanks for the encouragement and the super useful advice about GF.
My sister-in-law has celiac disease, so we are pretty used to having a very strict GF individual around. My doctor was very clear that he doesn’t think I have to go truly GF, just reduced GF (i.e. I can have a something that has touched GF, I just might not want to eat an entire loaf of bread)).
I too am very cautious of processed food. As someone who gets migraines I stay very far away from MGS, which means I generally don’t eat anything with preservatives in it and I’m already used to reading labels. I hadn’t thought that GF bread would be full of processed stuff, so I appreciate the heads up.
Thanks again!
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Have you looked at natural killer cells (nk cells)? Treatment is similar to above, with steroids, aspirin, and sometimes intralipids. The day I was due to do the test I did a preg test and got a positve, my gynae has put me on moderate nk cells plan so prednisolone (steroids) aspirin and clexane, and progesterone suppositories. So far so good and I did this from few days after bfp and I’m now 9 weeks. Fingers crossed we’ll get a thb. This is why I’ve been hiding not wanting to jinx things and talk about it but it’s def something to consider.
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Congrats on your pregnancy, mancTTC! As far as I’ve been told,they don’t test for NKa in Canada. And the only RI in Canada is far away from MPB (and me) and I’m not even sure he does that testing and if he did it would be out-of-pocket, too. 😦
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First, I am so incredibly excited for you mancTTC! I hope everything continues to go well!
And, as for the NK cells, spiritbabycomehome is correct with our experience in Canada. We have asked 2 RE’s about the tests and they are very adamant that the research isn’t strong enough to provide a link and so they don’t test for it. However, they also both indicated that getting the tests would be pointless because I am already on the treatment that is used for NK cells as I am already on the daily aspirin and will go on progesterone once confirmed pregnant. Anyways, thanks for the advice – I always appreciate it. 🙂
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Just wanted to add I had the test done in Australia for NK cells and my husband and I are also a partial DQ Alpha match (immunology says that this activates the NK cells to attack my embryos) anyway I wanted to say intrallipid treatment is considered to be as effective as IVIG and significantly cheaper. We have one miracle daughter after treatment for it so fingers crossed you get your miracle as well one day.
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Thanks for sharing!! I’ll definitely ask about the intrallipid treatment now that I know about it!
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Wow, his willingness to read up and send a letter to your doctor is excellent!
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Excellent is a great word for the situation. Even if nothing comes of it, at least I have another doctor wanting to help. 🙂
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Thank you so much for posting this. I am dying of envy about your relationship with your immunologist and his willingness to work with your RE (and the initiative he is taking to facilitate that). Green, I am. This is so great, I hope your RE agrees. I’m excited for you!
Are you talking about IVIG in the bullet that starts with “Google this”? I am afraid I’m going to be told I need this, too, and there is no way my insurance will cover that, I’m sure (my insurance has covered drugs in the US if they’re the same as we’d get here, I am in love with my employer for being self-insured and having this scope of 100% drug coverage).
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I am truly lucky that I have an immunologist first because I’m pretty sure my grass allergy was turning me into a summer hating miserable person, and secondly because now he is willing to look into the RPL stuff. I guess if I’m looking for a silver lining in all of this, I just found one. I’m not sure anything will actually come of it, but what I do know is that one more doctor researching me and our situation definitely wont hurt. 🙂
Anyways, thanks for pointing out that I somehow missed including the IVIG at the beginning of that bullet! (I’ve gone back and fixed it). The interesting thing I learned about IVIG is even if you want and are willing to pay gobs of money for it in Canada (at least in my province), you still cannot just have it. It will be very hard to get approval for it. So, this one is a super long shot, but interesting enough that I wanted to share it.
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Did your immunologist mention intra-lipids as an alternative to IVIG? I’m a little scared of IVIG, it being a blood product and all, but even my GP said intra-lipids are harmless and very low risk unless you have a soy allergy (which, miraculously, I don’t, or I have never been diagnosed with one). Maybe you could ask your RE about it? Some of the RIs will substitute intra-lipids for IVIG (Dr. Kwak-Kim won’t but she won’t fire you as a patient if you find someone else who will Rx that if you can’t afford IVIG), so it’s worth a shot in my view. Of course, if soy is among your allergies it would not be a good idea.
I really hope this new turn of events brings you some options and, most of all, a means to sustainable pregnancy. This reminds me – have you recently had your IgE levels tested while your allegies are all crazy-like? Just curious if your levels are like mine. I don’t know what I’m reacting to but it’s baaaaaad.
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Somehow I missed this comment.
No, we did not talk about intra-lipids. I’ll ask him next time I see him, which of course isn’t for a few more months.
Also, I have not had my IgE levels tested, there really is no point since we know my allergies are completely insane due to the grass an irritants in the air from nearby forest fires. Truth be told, I’m not sure if they’ve ever been tested. I will also ask about this next time I see him.
Anyways, I hope you are doing well!
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I’m thrilled the two are going to try to work together!
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So am I!
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Progress! This is awesome
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