Pregnancy Related AutoImmune Flare - Anyone Else?

Jello737

I'll try to sum this all up into a nut shell the best I can. Im currently pg with #2 and just had #1 less than a year ago. During my first pregnacny I started developing SEVERE hip pain which resulted in me being incapable of doing many normal things. I was unable to lift my feet more than a couple of inches off the ground without it feeling like something was going to break inside of me. My husband dressed me for 5 months and helped me with everything because i couldnt step into my clothes, get in and out of the car, step into our shower, lay in any position other than on my back because being on my side cause the same pain in my hips. All the while my OB was telling me that I was dealing with normal hip pain.

Post delivery, 8 weeks, every single joint in my body began to swell and get this same 'breaking or shattering' pain over the course of about 3 days. By that 3rd day I literally could not move a single part of my body without SEVERE pain - couldnt walk, could hold or grab anything. My husband had to push me in a wheelchair at the hospital because i just couldnt move. Blood tests showed high inflammation, got put on massive doses of sterroids for a month until I could see an RA dr. My uncle has rhumetoid arthritis by the way.

This RA dr. ran tests and said they showed nothing (by then the inflammation had gone down, but i was still losing hair, had blurry vision and nodules on my legs) and decided that it must have just been a flare from pregnancy and would go away, end of story. He didnt listen to me very well when I was trying to speak. Before all the symptoms left, 6 months later, I became pregnant again (oops lol).

Now I am dealing with the same hip pain, and again my OB chooses to not listen to me, even after what happened. I just want to know if there is ANYONE out there who has had a similar experience. I feel like no one believes me and no one will listen to me. If this happened to you, what did your doctors do? Did it go away for ever afterwards? Do you still have it? i just want to know that I am not alone in this.

Jello737

Thank you for your advice. What I experienced during my first pregnancy was my first and only with all of this autoimmune stuff. so I'm unsure about a lot of things. I am considering going to University of Michigan to see the rhumetologitsts there. I'm mostly curious to find out if anyone else out there had it begin for the first time during pregnancy as opposed to just after. Any similar experience would be helpful to draw from!

socialwkrsweetie

::lurking::

I would agree with pp and recommend you see a rheumatologist who specializes in autoimmune issues. I have lupus and they initially thought I had RA and turned out I had lupus with severe joint pain. It comes and goes and I do take several medications for it when I'm pregnant including 10mg prednisone and plaquenil. Anything above 20mg of prednisone during first tri could cause cleft palate. As far as paleo goes I definitely saw a major
Improvement when I ate that way. I really should go back to it! As far as biologics go, my RE feels they aren't proven enough for pregnancy so she won't allow them... But every Rheumy is different so I just wanted to put that out there. I am also followed by an MFM and OB during pregnancy. I unfortunately haven't had successful
Pregnancies yet but I'm hopeful I will in the future. Good luck and PM if you have any other questions! I have several autoimmune issues so I'm pretty well versed.

Jello737

Thank you for your advice. What I experienced during my first pregnancy was my first and only with all of this autoimmune stuff. so I'm unsure about a lot of things. I am considering going to University of Michigan to see the rhumetologitsts there. I'm mostly curious to find out if anyone else out there had it begin for the first time during pregnancy as opposed to just after. Any similar experience would be helpful to draw from!

Jello737

Sorry, idk why that comment posted twice- I tried to edit and it wont allow. Anyway, I didn't realize that not all RA drs specialized in autoimmune issues - I thought that was just part of the package for one of those drs. Im thinking the specialists at the university a couple hours away have better knowledge of these things. Im debating about weather it would be worth our time/money to make a visit to them now - not sure how much they can do while im pregnant? Wondering if it'd be better to see them when I flare again post partum?

Jello737

Thanks for the push! I've gotta talk my OB into giving me a referral for U of M now. Its good to hear advice from people who have had similar issues because there isn't anyone around me who can give any advice lol. Most people don't even know what im talking about, or they think im a whiny pregnant woman. 

From everything i've read and understand, pregnancy is definitely a trigger to autoimmune diseases.

salsa_wifey

:lurking:

I have RA and Sjogren's Syndrome. Because of this I'm high risk and see a high risk doctor. During pregnancy my RA doctor monitors my levels and has me come in once a trimester for bloodwork. I've been lucky and my body does the opposite of what you are experiencing - I go into remission during pregnancy. I do have a pretty bad flare a couple weeks after the baby is born though which I'm told is very common.

I would definately look into a new RA or discuss your concerns with your current one. They should be working with you and your OB to map out the best plan for you and your baby.

Also, you mentioned you have an uncle with RA.  RA is not hereditary but specific genes can increase your chance of developing the disease.

iqwedding3

I found an MFM with experience with autoimmune diseases because my rheumatologist had no idea what to do with a pregnant woman.  You may want to try that path as well if you can.

JAM85

I have lupus and while I have been lucky not to have a flare it definitely sounds like you have something very serious going on and pregnancy can often trigger autoimmune diseases in some. Unfortunately autoimmune diseases are also notoriously hard to diagnose and when you are pregnant you are likely to get brushed off as having "normal" pains especially if it is invisible to people (ie no physical deformity people can see). I would
Definitely not stop until you see a top Rhuemmatologist- try a teaching hospital as well as they tend to go more in depth or one who also specializes in pregnancy. Or, like a pp said, try to find an MFM who has experience with autoimmune diseases. I hope you can find relief- it can be frustrating to have to spend so much energy getting people to just believe you when it seems so obvious to you and you are in a lot of pain. I remember trying to get my diagnosis- but it is worth the fight!