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Bullous Phemphigoid - Psoriasis

Posted By Dugup

"Bullous Phemphigoid - Psoriasis"

About: GPs in Devon North Devon District Hospital / Dermatology

(as a service user),

Late December 2023 - Covid.  Minor itching on my back.

Mid January 2024 - increasing, first doctors appointment, followed by 4 more.  The last generated a close diagnosis plus steroids (6 diminishing course).  The itching, blemishes and blistering was checked by the drugs but came rushing back.  I was in despair as this was now late March, I couldn't sleep and my whole body felt like it was on fire.

Toward the end of that month my GP contacted our local Dermatology Department for an urgent emergency appointment.  This generated a date of early June(!) as the next available.  

I tried going to the private sector, this is Devon so the next date at Exeter was exactly the same.  Deep despair.

I persisted and a cancellation resulted in a 15 minute consultation and biopsy a week later  No drugs administered however, so back to my GP as I had never felt so depressed in my life. Very good response: the same steroid treatment as before which helped enormously.

I've just had confirmation of my condition: Bullous Pemphigoid.  Treatment: Ongoing steroids @5 plus 2 doxycycline per day.  Telephone consultation at the end of this month and face to face in early June.  Letters to me and copies for my surgery.

Day one of treatment started very badly, within 5 minutes from waking large new weal's appeared on my shoulders and the underside of my forearms accompanied by pain and increased itching discomfort. 

I ripped the box open for my medication and after about 30 minutes the issues though uncomfortable were just tolerable.  A bath then followed using a handful of Epsom salts followed by emollient creams all over my body.  It is now six hours later;  I feel raw, but making the best of things, trying to reassure myself that it is day one!

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Update posted by Dugup (a service user)

Update:

My drugs are working. Initially I still broke out in blisters on my hands and feet, those on the latter being large, with clusters on the gaps between the small fingers on both of my hands.

These burst and those on my hands are taking some time to heal as are the lesions on my back that is very itchy.

Now, although I do occassionally get small blisters one on each of my chest, right arm and right leg things have greatly improved. I take daily baths now with Dead Sea Salts which make me feel more relaxed. Talking to my wife concerning my issues is helpful though with friends seems to make me more stressed - my left arm hairs are more sensitive again, and the skin is itching, in fact I am generally feeling more 'sensitive' today.

I am easily moved to tears... though, to be very honest, I would class myself as a sensitive man... perhaps more so than the average.

I am also suffering from extreme sunburn. My fault for not realising the effects of the drugs.

Response from Alicia Stevenson, Nurse Manager Dermatology (Northern Services), Dermatology Team (Northern Services), Royal Devon University Healthcare NHS Foundation Trust last week
Alicia Stevenson
Nurse Manager Dermatology (Northern Services), Dermatology Team (Northern Services),
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 07/05/2024 at 13:37
Published on Care Opinion at 13:37

Dear Dugup,

Thank you for your detailed feedback and apologies for taking some time to respond.

I am sorry to hear you have such a lot going on and due to the anonymous nature of Care Opinion, I cannot give a personal response to your clinical treatment.

However, I am sorry to hear that your condition has caused such distress. As we cannot discuss this on Care Opinion, please take the opportunity to speak with us next time you attend Dermatology, to see if there is anything else we can do to help with your situation and symptoms.

Our usual practice is to advise patients regarding medication and side effects, if this was not the case regarding photo sensitivity, please do get in touch and we can go through these with you, we can also take this opportunity to go through any of the details surrounding your condition and treatment.

Once again, thank you for taking the time to leave your feedback, we hope to hear from you soon.

Kindest regards

Alicia

Dermatology 01271 312-850

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by Dugup (a service user)

Alicia

I did read the cautionary leaflet accompanying the antibiotics but as this was prefixed with 'May cause' I thought I could accompany my wife on a steep 70% shaded river walk of 3hrs and 6 miles.

However, I have second degee burns to my right hand, forefinger, thumb and end of my nose plus third to my face and feet (I cannot wear socks as this causes blisters to my toes), as defined in www.nhs.uk/conditions/burns-and-scalds/; therefore I am now well aware of 'adverse photo sensitivity'.

Should I have had a longer consultation than a 15 minute cancelled appointment? In a perfect world - you need to fill in the blanks here _____ Yes?

Do I think the dermatologist and support staff are trying to do help, most definately.

Am I complaining? No. The prescibed drugs were and continue to be a literal life line; and I will always, always be in debt to the person who phoned me concerning the cancelled initial appointment.

So, sincerely - thank you Barnstaple Dermatology Department.

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