Those with immune issues, please chime in

kmc84 · March 2014

I made an appointment to go and meet with our new RE about starting TTC# 2. We are excited and a little nervous, since having a new doc kind of feels like starting from scratch...... Anyway, I am very curious as to whether or not my jacked up immune system has anything to do with not conceiving on our own (or at all until we did IVF), or our m/c. I suspect that it does. I have Ankylosing Spondylitis (age 14), Type 1 diabetes (age 18), and hypothyroid (age 28). I also just had allergy testing done and I reacted to almost everything (7 molds, dogs, cats, several trees, several grasses, several weeds, dust mites,...). Since it's pretty clear that my body sucks, is there any testing for IF and immune issues? It's an area that I have not really researched yet and I figured I'd ask here first. If anyone has any links that you found helpful, or the names of any tests you think I should consider, I would really appreciate it. I just want to try and gain some knowledge before meeting with the new RE. Thanks ladies!

Ruthie04 · March 2014

I'll be following this! My derm is convinced I am HLA B27 positive since I have a hx of severe psoriasis and iritis. She's always testing my thyroid, RA, and ANA levels. Additionally, P is heavily tied to estrogen levels and I can't help but be curious as to how the auto immune component influences my fertility. There's also some literature that shows a correlation between low birth weight and severe P and both of my boys had IUGR. My RE said there was a chance my P meds were influencing my HPA axis, but he said it should t be happening of I was super careful about application of the topical steroid. Anyway, I can't help but wonder if something is going on.

We plan to not try to prevent for a few years and see what happens. I do not want to go through IVF again. During that time, I plan to make some diet changes to stay in line with an anti inflammatory diet...sort of like the endo diet. I don't know if it will help, but I'm curious if it will make a difference in my P. Sorry I don't have more info, but I am VERY interested in what you find out! Can you let me know if you stumble across any literature or info?

kmc84 · March 2014

@Ruthie04 Is your derm able to order bloodwork? My Rhuematologist diagnosed with AS after 3 years of bouncing from doc to doc who didn't know what to do with me. I have HLA B27 (everyone who has AS has HLA B27, but not everyone with HLA B27 has AS). Also, a little off topic (I know Enbrel can be used for certain cases of psoriasis), but I take Enbrel and it works amazingly well for my pain. I actually take a pediatric dose and since TTC/pregnancy/BFing, I take it as infrequently as my pain level allows. There are no organized studies with Enbrel in pregnancy/bfing, but the data collection that has been ongoing is showing absolutely no increase in risk to baby. Also, it's a very large molecule, so it appears that it is unable to transfer into breastmilk. That said, my Rhuem was very cautious and did not want A to get any live vaccines if I had taken Enbrel within 8 weeks of injections.

If I find anything, I'll be sure to send it your way!

Ruthie04 · March 2014

My derm can order bloodwork, but her thought is...will knowing you are HLA B27 make any difference in the way we manage your care? She says no, so it's not something she feels we really need to explore. When I had iritis, the ophthalmologist thought about it, but said he wasn't 100% sure this wasn't just a random occurrence and that he would run additional bloodwork if I had another attack.

Prior to having the boys, I was pretty well managed with light therapy and topical steroids. In pregnancy, I was in near remission. But, since P is so closely tied to estrogen levels, post partum and breast feeding made it go nuts...from head to toe. Thank god maxi skirts and dresses are in style! During that period, I discussed systemic and biologics with my derm, but I've always been too scared of the side effects. We also talked about some low dose oral steroids to jump start my immune system. But, I was too scared, as a high enough dose would cause me to flare even worse! In the last month, my P has started to look tons better. I'm hoping I'll finally be able to take the boys swimming this year! Carrying around two toddlers has made my legs look fab and I miss wearing shorts and skirts! But, I had no idea about a small dose of Enbrel! I don't worry about my P in pregnancy since I hope to be clear again, but it terrifies me that I could have another flare. If we are lucky enough to have another, I will definitely bring it up. Thanks!!

luvboston · March 2014

I go to a repro immunologist the BEer Center that's how we got Lo. There are alot of tests that need to be done when getting a work up and only 3 labs in the country that can process it. If you want info go to their website and I can also pm you the long list of tests.
You can work with them remotely.

kmc84 · March 2014

@luvboston‌ if you don't mind, I'd love to take a look at the list you have. I will also look at their website later. Thank you!

kmc84 · March 2014

@Ruthie04‌ I think the biologics are the best thing since sliced bread

the pain I was in all through high school was horrid. I exhausted all my treatment options before starting Enbrel. I started on an itty bitty dose because I was given a sample and I was trying to stretch it since my insurance was moving very slow. The low dose worked, so I stuck with it. Why take more if less works?! Humera is another biologic that they use for psoriasis. They all have potential side effects, but I had run out of options. I luckily have no side effects other than an occasional red warm bump where I injected. I am careful to avoid sick people too;)

Ruthie04 · March 2014

Thanks for the input on the biologics! I know one of them has an increased risk of melanoma in P patients, but I can't remember which my derm said. Maybe Humera? My derm said it's only a matter of time before PA sets in, but I'm in denial. I think I'm doomed to biologics then. I'm super interested in this low dose. How did that work? Do you just request it? The one great thing about my P is my crazy strong immune system. Do you find yourself getting sick more often?

I know I need to be more proactive about things, but I'm just dreading it. My P has caused my platelet count to be sky high (since I'm in a constant state of inflammation) and I am at an increased risk of heart disease. I've got to get serious about it, but I told them I want to wait until I am 100% done TTC. I think DH will go for a vasectomy in 3 years and that will be the end. Still, I feel like I need to do the research now.

Sorry for hijacking your thread, but I'm so interested in what you are taking about! Thanks!!

kmc84 · March 2014

@Ruthie04 I think Enbrel was the first biologic released (I could be wrong, but it was one of the first). The usual adult dosing for Enbrel in patients with AS (and PA also!) is 50 mg injected per week (can be one dose or split into two 25mg injections). It's very expensive and my insurance had initially denied coverage for it. I had exhausted every other treatment option at that point, so it was my only hope. My family was getting ready to go to Hawaii on vacation for 2 weeks and I was in so much pain, my dad would pick me up out of bed in the morning and carry me to the bathroom so I could try and get ready for school

My Rhuematologist decided to give me the Enbrel sample she had been given but it was only two 25mg doses. I split the injections up over the two weeks and in three day I felt like a new person. Once my insurance approved it, I stayed with my 25mg dose every two weeks, per my request and discussion with my Rhuem. I figured if it worked so well, I didn't want to take more 'just because'.

I don't really find myself getting sick more often. When I do get sick, I really sick; maybe three times a year. (Higher fevers, longer recovery) I try to avoid people who are sick, I carry hand sanitizer for after grocery shopping, things like that. Luckily, my labs have been great.

My Rhuem wasn't crazy about me doing IVF, being pregnant or breastfeeding on Enbrel, but like I said, she is super cautious. Everything I could find showed that it was safe. The only other treatment option for me that was know to be safe was steroids. However, since I have type 1 diabetes, steroids jack up blood sugar something fierce, and that is absolutly not safe for pregnancy (or me!). The three day of steroids for IVF is brutally hard to keep my blood sugars down.

STL34 · March 2014

I actually worked with Dr. Braverman for immune issues when I was TTC #1. Now that he will only order tests and prescriptions through a local collaberative physician, I am unable to work with him (I couldn't find anyone willing to collaberate). Anyhow, I too have AS. Although, I am one of the rare cases that are HLA B27 negative. When I did the testing requested by Dr. Braverman, they found a bunch of issues. I was treated for those issues during my third IVF cycle and it was my successful cycle and my very first pregnancy. I am now TTC #2 and praying that I can get pregnant without the immune treatments since they are not currently available.

@luvboston, does the Beer Center use Nuepogen injections as part of their treatment protocols? That is what ended up making a difference for me.

kmc84 · March 2014

@STL34‌

Very interesting! Can ask what the other issues they found were and how did they treat for them? Best of luck with #2!

luvboston · March 2014

STL34 said:
I actually worked with Dr. Braverman for immune issues when I was TTC #1. Now that he will only order tests and prescriptions through a local collaberative physician, I am unable to work with him (I couldn't find anyone willing to collaberate). Anyhow, I too have AS. Although, I am one of the rare cases that are HLA B27 negative. When I did the testing requested by Dr. Braverman, they found a bunch of issues. I was treated for those issues during my third IVF cycle and it was my successful cycle and my very first pregnancy. I am now TTC #2 and praying that I can get pregnant without the immune treatments since they are not currently available.
@luvboston, does the Beer Center use Nuepogen injections as part of their treatment protocols? That is what ended up making a difference for me.

No they use other things.

luvboston · March 2014

Kmc I have been sick but will get the list to you I haven't forgotten.

kmc84 · March 2014

@luvboston‌ No worries! I know you and dd have been under the weather! Whenever you get a chance is fine

thank you! I hope you are both feeling better soon!

BunnyBerry · March 2014

Of my GP, Gastroenterologist, Gyn, and RE, none of them indicated that my Crohn's could be related to our primary infertility. Perhaps that they thought it was so obvious that I should just know already? I never thought it was though. Anything I have searched references issues with childbirth or chance of passing on the disease, but never as a contributing factor to infertility.

The docs just wanted to make sure my meds were safe enough (no problem with Pentasa and Entocort), and my GP was worried about a pregnancy in terms of my health (another Crohn's patient recently ended up in a choose-mom's-or-baby's-life situation) and wanted to make sure I knew what we were getting into.

Strangely, none mentioned that the uber-strict low-fiber, low-residue diet I must follow (no fruits and veggies!), my inability to exercise due to painful stricture, or recent weight gain on steroids (20BMI to 25BMI in a year) as possibly indicated in our infertility.

I will definitely have to ask next time...good luck with #2!!

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