Here I am crying and awake in the middle of the night. I’ve been keeping strong, but tonight it’s just terrible and getting to me emotionally.
I’ve had test after test after test tell me that my hellish rash is not Dermatitis Herpeformis, I do not have celiac, and gluten is not to blame.
Last year in late September, I had a huge water blister appear on my right temple. No rash, big like a pencil eraser, little did I know my life was about to change dramatically.
I have an intensely itching, burning, blistering rash – in between the blisters is itchy, painful burning red, raised “hives” even though they’re like no hives Ive ever encountered. THey’re big, like continents instead of bumps.
Doctor to doctor to doctor, several referrals and endless, endless copays, four biopsies later (that concluded nothing), I was controlling the devastating rash with prednisone and dapsone. My rash did NOT come and go, it is constant. Is that ever DH? It is always constant without treatment.
So, I’ve been on some sort of treatment since November. The higher my dose, the better. With 150 mg dapsone and 70 mg prednisone, my rash was gone. The scars and scabs were starting to heal and it was wonderful, but I knew being on those medications long-term was not safe. Here we are in July… still no cure. I have weaned very slowly off of the prednisone. Dapsone is working, but at only about 85 percent. I still continue to break out daily on my face with blisters. I’m ugly, but still, I can live my life. I have other symptoms, waking up every morning with stomach pain, but whatever… no one knew wtf was wrong with me and at least life was tolerable.
SET IN: Sunday, July 3rd 2011. I discover I am pregnant. I must stop the dapsone. So here I am… my rash has only intensified since and I’m crying, unable to sleep at 4:39 am with my scalp, back, neck erupting in blisters, so itchy that I want to pull out my hair (Did I mention that it seems like Ive lost over half of it? And the other half has broken off so I look like I have a mullet? All this hair loss has happened dramatically, and WAY more than normal over the weight loss… way, more, my hair is brittle, thin, wispy – I am unrecognizable now and resort to many methods, even sometimes wigs, to try to look normal)
I’m completely devastated. How will I survive this pregnancy? Should I get the “a-word”.. yes, it’s so unlivable in the middle of this night I’ve considered getting an abortion – even though that is NOT WHAT I WANT – as a woman with 2 other children happily married over 10 years to my husband, that is NOT what I want… but how will I survive this?
Oh Coles… I am so sorry to hear about the trouble you are having. Don’t make any rash decisions. Lack of sleep can screw with your mind.
You need to demand that these doctors identify the problem and address your treatment in light of the pregnancy. I had a undiagnosed skin issue (NLD) and it took them YEARS to figure it out and I went to ONE doc who diagnosed it in the first 5 seconds of our visit.It sucks to have to advocate so hard in the health care world but you and your baby are worth it.
I just saw your comment on my DH post. I absolutely think you should give the gluten free diet a 100% shot. You have to completely clean the gluten out! But it takes a while for DH to clear so if you get discouraged, just keep pushing through. I’d also recommend dairy might be an issue for you but I think you might want to try one thing at a time. Good luck with everything, I’m so sorry for all that you are going through!!!!