Anyone else TTC with an autoimmune disease?

[ladikat01]

Is there anyone else TTC while dealing with an autoimmune problem? I have Rheumatoid Arthritis and Sjogrens Syndrom and would love to comare notes with some else who is dealing with something similar.

 

[ladikat01]

::bump:: No one out there dealing with this? I'm still hoping for at least one!!!!

 

[MommyMichele]

You can talk to me. We think there I have an autoimmune disorder but are having issues with testing and all that jazz. My GP is pretty sure I have RA considering the amount of pain I have from my joints and we are questioning Cushing's. I already have one pituitary problem (high prolactin/prolactinanemia) but I'm wanting to be checked for Cushing's.

 

[ladikat01]

Autoimmune is really hard to diagnose sometimes. They still aren't 100% sure I have RA, it could be Lupus. I hope you get answers soon! They have a lot of great new drugs (which I won't be able to take while pregnant...) that can in some cases stop the disease in it's tracks. I've been diagnosed for 5 years and my Mom has had RA for over 20 years.

 

[MommyMichele]

What sucks is there is not just one test to prove we have any of these. They do several tests and just guess from that, which isn't right but there is nothing to be done about it.

How are you dealing with your pain? All I can do here is heating pad, hot baths, and meds that make me crash.

 

[ladikat01]

For some of us the tests are useless. My blood tests still say I'm completely healthy. My Mom's did the same thing for the first 10 years! My RA was caught really early since I grew up seeing the symptoms with my Mom. I had to change doctors a few times to find one who would listen (was told that 20-years old don't get RA... yeah, right!). Since I got on the meds really early the pain wasn't that bad for me. My biggest symptoms are usually massive fatigue and really bad stiffness with occasional depression. What meds are you taking? Enbrel has been wonderful for me. It gave me my life back. I'm a little afraid of what it will be like when I get pregnant and have to get off of it...

 

[valoredei]

I have an autoimmune disorder. Hoshimoto's Disease (Thyroid), and autoimmune Hepatitis (last episode was two years ago). TTC for nine months now and going in for some tests in a couple weeks!

 

[MommyMichele]

All I have for pain is Mobid and Flexirill. They suck. Well they work but they make me crash hard and I can't do that. I understand the depression and the stiffness, hard to get out of bed much less get going some days.

 

[kellis]

Hi girls, i have Crohns disease and i'm waiting to go for blood tests for various other things next week. just got negative for coeliacs disease which is good but they think i may have food allergies! As if we don't have enough to stress about with ttc lol

 

[CedarWood]

I have hypothyroidism and Celiac (Coelic) disease both autoimmune.

 

[shaerichelle]

I have several things going on with me. I think some of it is automimmune...issues.

I have to be gluten free ..I didnt show up for celiac. I have several food and environmental allergies, alothough did lose some. I have possible adrenal fatigue and fibromylagia.

 

[PonyGirl]

Hi ladikat01, I have Rheumatoid Arthritis too!!!!! I got diagnosed about 9 years ago. I've been on tons of meds and had an elbow replacement In the past year or so I have gotten a bit worse and am getting it under control again now. We started preparing in september for ttc now. We knew the best thing would be to wait to control the disease (and let me tell you that waiting was hard!), and to stop methotrexate and get it out of my system (super dangerous for babies). I had a lot of deep rooted fears about my body being healthy enough, but when I met with my ob/gyn he was amazing! Other than my ra, I am really healthy. We eat well, I try and exercise how and when I can. He was totally confident in me and my body I also have a very supportive, and involved, partner who will be of great help to me when I am flaring or in pain.

For those of us who have an auto-immune disease, there are so many other things to think about when trying to conceive: what meds we are taking, when to stop them (some meds require up to two years before ttc!), if we are in the best health to become pregnant, caring for the baby afterwards if we have mobility/pain issues, planning around surgeries, etc. There certainly is a lot more planning than the general public However, I know that we can do it, because we WANT it. I actually started a blog recently to meet other women like me who were ttc : https://ponybionic.blogspot.com/

If you ever need to chat, I am here!

 

[ladikat01]

I knew there would be a few of us out there! PonyGirl, I know what you mean about going through the pain of getting off meds before trying. I had to put off trying for 6 mos past my original target date since I had to step down off the methotrexate a lot slower than originally planned. I'm just glad I can keep taking Enbrel until I actually get pregnant.

Is anyone dealing with Sjogren's Syndrome? It's a (usually) secondary autoimmune condition that causes dry eye, mouth, etc. I'm asking because I think it may be impacting my CM. I'm taking mucinex which helps but I still never get EWCM.

I've read that having an AI can make getting pregnant take longer that usual. I'm really hoping that combined with coming off of BC is what my problem is. My cycle has been almost normal the whole 11 mos we've been trying. The past few months it really has normalized but still no

 

[PonyGirl]

I had heard that it can take longer with an AI, too. When I asked my rheumatologist about it he said that it may be an issue, because of having an illness that can cause other health probs. But, if you are healthy as can be otherwise, I don't think there is much of a link. I have been on many RA discussion boards, and this has come up and the majority of women have had no issues

Sorry, I can't help much with the Sjogren's...maybe using some lube that is beneficial to sperm, I believe they are ConceivePlus and another one....anyone know??

I am taking humira until I actually get pregnant, too. I don't want to be off meds, unless I need to. Both my doc and ob/gyn are very supportive of this

Cheers!

 

[rtarbell]

I have what they refer to as...Overlap Syndrome--a combination of an autoimmune disease and connective tissue disease. I also have arthritis and raynaud's phenomenon. We are ttc and I have recently gone down on my meds--plaquenil. I am nervous about starting to feel awful again and not getting pregnant right away. We've been trying for four months. Good luck!

 

[sallyd]

Oh boy, I know all about this.....
I've had Rheumatoid Arthritis since age 7, only in my knees. It flares up every 5 years or so. My husband and I have been TTC for over a year now, with absolutely no success. Everything is 100% perfect with both of us, so it was a mystery. Then in July, I got on Clomid, and my knees got extremely swollen. This became a vicious cycle for me every month - I would get on fertility medication, my knees would swell, I would end up having to have the fluid drained out, and then start all over again. However, during this entire process, none of my doctors believed that the fertility medication was causing my RA to flare up. But I KNEW it was... and in the back of my mind, I wondered if it was also working in reverse - my RA causing my infertility.

Then in January, I finally begged my RE (reproductive endocrinologist) to run their auto-immune blood workup on me. She really hesitated because that is something they usually don't do unless you've had a failed IVF. But the blood work came back showing that I have 4 auto-immune issues that ARE related to RA and are definitely affecting my fertility. I was positive for Anti-Nuclear-Antibodies (ANA), Sjogrens Antibodies, MTHFR, and Plasmenigen Activator Inhibitor. I'm still in a little bit of shock by the news, but so glad to finally have a diagnosis. The ANA is pretty much what is preventing pregnancy - my uterus flares in the same way my knees do, when there is an increase in estrogen in my body. The Sjogrens could possibly affect a baby's heart if not treated, and the MTHFR and PAI are both blood clotting disorders.

So this sounds bad... but it is apparently ALL treatable. I am doing IVF (in the middle of my first cycle right now). I take 10mg of prednisone daily for the ANA, and a baby aspirin and folic acid supplements for the MTHFR and PAI. If/when I do get pregnant, I will immediately start on a blood thinner, Lovenox. According to my doctors, this should be all I need to have a successful pregnancy! So we will see.

So for all of you with RA trying to conceive, you MUST beg your doctor to test you for these auto immune issues, and don't let anybody tell you that your RA is not affecting your fertility - it very much could be!!

 

[molly85]

Hi,
I'mnew to auto immune issues,I have just been diagnosed with hypothyroidism I also have a mild form of osteo arthritus mainly in hands and feet as i have loose ligaments this has ledto bunion surgery in both feet. Neither condition I believe has been helped by6 years of Depo provera and implanon

 

[rtarbell]

Uuugghh! My ANA is through the roof! I just worry that the autoimmune issues I have will be a problem--ie... preventing me from being able to get pregnant. I also only have one ovary--I have a history of cancer. My oncologist said that getting pregnant wouldn't be a problem, but my obgyn doesn't wanna do anything (ultrasound, HSG) until after a year! I was on the pill for 15 years. My periods have been very irregular and long--19 days last month. I've been ttc for 5 months now. I'll keep you all posted...I'm seeing my oncologist next week!! He had offered to do an ultrasound, so hopefully I'll get a good report! Thanks everyone--this has been one of the most helpful threads!!

 

[Nessicle]

I have coeliac disease which is an autoimmune disease!

Cannot have anything containing wheat and gluten (believe me this is in bloody everything soups, sauces, salad dressings you name it!) or my body attacks it's own tissues which obviously stops me absorbing nutrients and makes me very ill. Would be very dangerous in pregnancy to eat anything containing it!

 

[greens]

I am a believer is using lifestyle to help influence and quieten immunue system responses.
I eat a low inflamation geared diet.
OK it means I have to think ahead and prepare meals from scratch etc. but for me it is better than eating a high processed diet which would be pro inflamation.
Thank fully the other upside is that it is the healthiest option for my eggs seeing as I am a late starter to TTC.