Bullous pemphigoid

[DannyBoy1]

Has anyone here developed Bullous pemphigoid? It is described as an autoimmune disease that produces painful, weepy blisters. I have it now. It is managed with ointments and avoiding sun exposure. I found this article that describes it:

mayoclinic.org/bullous-pemp...

[MaryF Administrator]

Wow, that is a name and a half, have you had your vitamin D regularly checked to be at the right level?     ncbi.nlm.nih.gov/pubmed/229... I also notice the inclusion of the Thyroid not being adequately treated with this coming out, alongside autoimmune response and drug side effects:    hindawi.com/journals/tswj/2...

MaryF

[DannyBoy1 in reply to MaryF]

Yes, it's a mouthful. It was diagnosed by by a dermatologist. Thanks for the link. I've been curious about my thyroid and this is another reason to take another run at my GP for testing. I have several indicators. My Vitamin D is in the normal range but only because I take D supplements. He would be furious if he knew. I noted with a chuckle that this article suggests avoiding fruits and crunchy vegetables too! As if! What a hoot.

[MaryF Administrator in reply to DannyBoy1]

The NHS thyroid testing is very limited and unreliable, I went and did mine privately with much more detailed tests which showed up that I did indeed have a thyroid problem. MaryF

[disabledby in reply to MaryF]

Yes. I have lipoedema and horrible bullous pemphigoid -massive blisters on my lower legs. I also have Pernicious anaemia and problems with producing red blood cells, as well as an unrecordable level of Vit D at one point recently. Full of rare diseases apparently and being much pored over by nurses doctors and consultants.

[DannyBoy1]

Hang in there and be persistent. Gently insist the Medics listen to you until you get an answer. Chances are pretty good they have no idea of the effect of APS on these ailment.

My GP insists on maintaining an INR of 2.5 - 3.0 when I feel far better closer to 4.0. Idaho is not a bastion of knowledgeable AP docs. But I keep printing articles off this web site and persistently asking that he look at things differently. He may come around as your Medic may too. Just keep reading and informing yourself!