Pemphigus foliaceus

[reef]

After three months of constant itching I have now been diagnosed with pemphigus foliaceus. Is there a support group for this dreadful disease in the uk?

[Shell567]

Hi reef,

I don't have your condition, but I did locate an online community where people discuss their experiences of pemphigus. Here's the link: dailystrength.org/c/Pemphig...

You might want to think about contacting the Pemphigus Vulgaris (PV) Network to see if they know of any UK based support groups. Unfortunately, I couldn't find a UK email address. Their UK web address is: pemphigus.org.uk/

You can contact the PV Network in writing by sending a stamped, addressed envelope to the Pemphigus Vulgaris Network, Flat C, 26 St Germans Road, London SE23 1RJ. They do offer support to people with various forms of pemphigus.

There is an International Pemphigus and Pemphigoid Foundation online. They also have a FB group.

pemphigus.org/

facebook.com/pages/Internat...

Good luck with your search.

[reef in reply to Shell567]

Many thanks.

[Hidden]

I wonder how you are getting on reef. I have Bullous Pemphigoid and there is a 'Support Group' it is run by a lady who has the disease and she does her best to help but I feel she is a little out of date. Having said that, I have found that I am on my own. They tell me it is a rare disease and generally goes into remission after about 5 years. I know more than the doctors now!

patient.co.uk/forums/discus...

Have you seen this page?

[reef]

Hi mrsmop,

I have been prescribed steroids and immunity suppressants (prednisolone + azathioprine) since November and the itching and the lesions have now disappeared thank God. I started on 20mp steroids and am on 5mg now. The dermatologist says that I will be on azathioprine for many years to come as pemphigus is know to come back if treatment is discontinued.The only side effect from the steroids is the rapide extra weight.

I agree with you regarding doctors knowledge. I have been seeing 4 different doctors for 3-4 months and not one of them thought of pemphigus due to the extreme rarity of the disease.

Even the consultant has a guess type of knowledge whenever I ask any questions. Clinical trials are rare and small sized which does not help in giving a robust explanation of what works and what does not with this disease.

The forums are helpful in giving hope that the disease can go into remission but it appears to me that the pemphigus group of disorders (and possibly pemphigoid) are treated essentially wilth a mixture of steroids and immunity suppressants. Other types of treatment such as herbal and acupuncture have no effect to my knowledge.

Best wishes with your condition.

[Hidden in reply to reef]

Hi Reef

I saw the Dermatologist in January and she put me on Methotrexate. She told me to take it for 4 weeks, then she would see me again. I haven't heard a squeak since.

I went to a Dermatologist privately in February and he told me that the Methotrexate was too low a dose to be of any use and to stop taking it.

I was taking Doxycycline 200mgs daily, which I believe was helping but my GP told me to stop taking it. He told me that I would have to stop taking all the drugs soon.

I asked to be referred to a different Dermatologist, the one that I had been seeing, just wasn't interested and kept trying to discharge me. As soon as I asked to be referred, the GP became very hostile but agreed to write to the Health Board. I don't know what he wrote. I only know what he said he would write. I received a letter from my GP Practice, asking me to make a routine appointment. I haven't bothered because I assume it is a 'no'

BP is supposed to go into remission after 5 years, so that must be soon. I'll believe it when it happens.

The itching is pretty much under control now. I have blisters in my mouth and on my head. The hostile GP doesn't believe I have Bullous Pemphigoid, it is very rare he said! For the past 5 years, I have just existed. It would be nice to wake up, full of beans and to do what I used to do.

blistertrial.co.uk/

I was unable to take part in the above trial because I had been on steroids in the previous 12 months but I was able to take steroids and doxyxycline until my GP pulled the plug. Personally, I think he was wrong and I should have carried on with the Doxyxycline but, he's the qualified person and I am not.

[reef in reply to Hidden]

And have you tried or discussed Azathioprine with your gp?

[Hidden in reply to reef]

My Dermatologist did various blood tests and I can't take it. Hence the Methotrexate

It is unfortunate that the GPs aren't interested in Dermatology and the Dermatologists seem to have vanished

[reef in reply to Hidden]

If you're in or near south west there are several dermatologists in Swindon and Bristol hosps. You're allowed a second opinion on nhs.

[annelli]

Hi Reef,

I've had Pemphigus Foliaceus for over 10 years now. The only time it went into remission was a few years back because I had a lump on my adrenal gland causing it to over produce your body's own natural steroids. This was removed over a year ago and unfortunately my pemphigus has returned. I'm waiting to see my dermatologist to see if she can now prescribe steroids as they've been cautious because of my history.

One thing that does interest me is whether diet aggrevates the condition in any way, particularly gluten in wheat? I'm desperate at the moment so am going to try eliminating it just to see. From what I've read on the internet, there are similarities with PF and Dermatits Herpetiformis which is proven to be linked to Celiac disease caused by gluten.

Probably barking up the wrong tree, but I'll give it a go!

[reef]

Hi Annelli,

Reading your message I remembered when I went to see the dermatologist in the early days of the disease and still unsure what the problem was. I excluded all diary products from my diet and for the first 3 days the itching was minimal to the point that I was deceptively convinced that I have an intolerance to cows milk. When I mentioned this to the Dermatologist he dismissed my explanation quite cruelly saying "that might be a factor but you have a problem!". Needless to say that the following day the itching started in earnest and the following week I was a confirmed PF statistic.

I heard that spicy food does aggravate PF but I can't testify to that.

Have you been using the same treatment (i.e. steroids + azathio) and have you managed to to be on 0mg steriods?

Cheers

[Hidden in reply to reef]

Hi again Reef!

I think sometimes, some doctors are very quick to dismiss what the patient has to say.

Good luck!!

[tricia22]

Hi i have been diagnosed with the same did you find a support group

[reef in reply to tricia22]

i have not found one as the disease is so rare in the uk.

have you been diagnosed with pemphigus vulgaris or foliaceous?

and are you taking medication?

[tricia22 in reply to reef]

I have pemphigus fol thingy sorry cant spell im on mycophenolate and prednisolone which is being reduced but i still kwep getting a few blisters

[reef]

that's 'good news' in a way because vulgaris affects the mucous membrane and is thus much more invasive. i'm surprised that you have not been prescribed azathioprine! it has worked very well for me.