pv and bullous pemphigoid

[EastYorkshireman]

Diagnosed with pv 3 years ago.

Taking Hydroxycarbamide.

Now developed watery blisters on my legs from ankles to upper thigh.

Thought at first that I had been bitten, as a very itchy small lump appeared on my leg about 2 weeks ago. However, my legs are now covered in blisters which eventually break and leak a clear fluid down my legs. Using antihistamine to help with the itching which is really bad! The first blister has now healed well but as one heals another appears. I am waiting for a blood test to confirm bullous pemphigoid.

Has anyone else developed this autoimmune disorder or is it a random development that has nothing to do with my pv or Hydroxycarbamide?

[hunter5582]

Sorry to hear about this skin condition. It sounds most unpleasant.

Hydroxycarbamide can cause a variety of skin problems, including the more serious vascular ulcerations. What you are describing sounds different than that however. I would be sure to involve a MPN Specialist in the assessment just to rule out the hydroxyurea being involved.

PV can cause pruritis. I am not aware of any link between PV and bullous pemphigoid, which is an autoimmune condition. There could theoretically be a link to PV systemic inflammation and immune dysregulation, but that is just conjecture. It is a question I would be sure to ask a MPN Specialist for the best answer.

Please do let us know what you learn and how you get on.

[EastYorkshireman in reply to hunter5582]

Thank you Hunter.

[lizzziep]

I had this with hydroxy, on my feet, but they wouldn’t heal, just got worse and more painful. Eventually saw a dermatologist and she said straight away it was the hydroxy and I was changed to Anagrelide.

From a South Yorkshire girl who had an East Yorkshire mother! 😁

[ainslie]

sounds like one for the dermatologist

[Petsarebest]

when the skin heals is it tougher or more leathery than your normal skin?

[EastYorkshireman in reply to Petsarebest]

No, it eventually returns to normal but with slight discolouration

[KLCTJC]

BP is usually a random occurrence in patients over 60. And as far as treatment causing it is usually from immunotherapy. I wouldn’t think it would be from your hydrea. However, I see patients that get it all the time on immunotherapy for cancer. And it is treated well with dupixent. And can be taken while on immunotherapy. Dupixent is technically a biologic, but I would think it could be used with hydrea. You will have to ask and see if they will allow it. In the last few years this has been one of the best and safest treatments for BP. Of course, their is old school treatments like MTX, Imuran, etc. Or sometimes I would just do doxycycline and topical steroids, it just depended. But dupixent has been a game changer with BP. Super easy and super safe. It is an injection every other week. You need to talk with her dermatologist and they need to talk with your oncologist.

[RCBr]

If it doesn't turn out to be the HU you need to get referred to dermatology urgently for their advice and support. Bullous pemphigoid usually occurs in people with multiple co morbidities. Unfortunately further blisters do occur, and the condition can last for a long period of time. Therefore prompt advice from derm. helps get things under control from the off set.Good luck moving forward x

[47069]

I had bulbous pemphigoid many years ago before I was even diagnosed with ET.. I sympathize with you as it is very painful, very itchy, with blood and liquid in the bubbles… prednisone for 5 years and they finally disappeared.