Any other bees suffering with autoimmune issues?

posted 3 years ago in Wellness
Post # 16
34 posts
  • Wedding: October 2017

stinkeye42 :  hiii! There really is no other way to put it other than it sucks! Im in a flare up and i want to stay in bed forever. Two days ago I was packing away like crazy because we are moving but, that girl is gone for a few days. 

Post # 17
644 posts
Busy bee
  • Wedding: A restaurant on the beach

My autoimmune disease isn’t half as bad as the ones posted on here. I have eczema thats triggered by the heat. So basically if I’m out in the sun or if I get too warm I break out in a complete body rash (ear lobes, toes, everything) that turns me into a big swollen itchy mess. I’ve had it since I can remember and I’ve been on the strongest steroid ointments available but they stopped working a couple years ago. My dermatologist and PCP pretty much said they can’t prescribe me anything else, which means I’ll most likely have the rash for my wedding. But reading posts like yours really puts my problems into perspective. I hope you fell better bee! 

Post # 18
210 posts
Helper bee
  • Wedding: January 2015

mrsteacherlady :  I hear you! I’m coming out of a flare up and on Sunday night went to bed before 10 and ended up sleeping until noon Monday. I felt a lot better when I got up, but I’m still dragging around semi-zombified, lol. 

Post # 19
2523 posts
Sugar bee
  • Wedding: July 2014

Yes- I have had chronic ITP since I was 14 (I’m 29 now)- it is an autoimmune disorder which attacks your blood platelets, causing bleeding, bruising, fatigue, too much blood loss if there was an injury, and a risk for spontaneous brain hemorrhaging.  Autoimmune disorders always come out of nowhere- doctors know very little about hte autoimmune system.  They don’t know how or why we get them, and even treatments known to help they typically don’t have a clear idea why.  It was really hard, especially at first, but eventually doctors learned what kind of treatments my body responded the best to, and my body started to adapt to the condition and gradually the symptoms were less severe.  After an experimental treatment 4 years after diagnosis, my body somehow completely compensates for the bad antibodies, and while I still make them in loads, I no longer have any symptoms at all, and have been able to live just as if I didn’t have an autoimmune disorder for the past 10 years.  However, it was a hard road getting there.  Symptoms were hard to deal with, treatments were physically and emotionally challenging for me, diagnosis was really hard, and I still have to go to a specialists several times a year to make sure my body remains in control.  It does get better when you begin to understand how your body will react to the condition and treatments- everyone is different.  I’m currently expecting my first- and there are a lot of concerns that severe symptoms will come back because my body is busy dealing with a pregnancy (5.5 months now and knock on wood they haven’t!!), and concerns that my ANA will be passed onto my baby.  However, if it is passed on to the baby it is only a problem for the first few days- it will then make its own blood and they wouldn’t make the bad ANAs- so no long term condition or concerns.  I plan to avoid breast feeding so my baby isn’t continually at risk for receiving my platelet distroying ANA.  

Autoimmune disorders are unique for everyone, and that makes it difficult because no one understands it or clearly knows how to treat it.  But, it does get better once you figure out the best way to manage it.  Rest, trying to keep stress levels low, and a healthy diet definitely help.  

Post # 20
1209 posts
Bumble bee
  • Wedding: July 2011

Autoimmune disorders suck. Darling Husband has ulcerative colitis (dx over 12yrs ago at age 18) and he’s had great luck with Remicade for about 10yrs now after basically every other med failed – it’s also used as an RA medication, so you may want to look into that if you don’t like Humira? We max out our health care costs each year, but we’re simply grateful to have insurance because DH’s Remicade would cost about $22-26K every other month if we didn’t. 

I have Hashimotos, but it’s been pretty manageable so I can’t really complain. However, we have been trying to pinpoint something else fun and exciting going on. The doc initially thought it was RA, but it doesn’t seem to be. Skin rashes have indicated towards lupus, but not enough other symptoms for that. Just working our way through the autoimmune disorder list lol.

The human body is a weird, magical, and sometimes frustrating thing ; ) 

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