Author Topic: Another Pompholyx case  (Read 6251 times)

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Offline hadenuf

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Another Pompholyx case
« on: Friday October 24, 2008, 02:25:29 AM »
Hi everyone
I've been suffering with the dreaded pompholyx on my right hand for about 8 years although I only recently had it diagnosed as such.  Up until then various doctors just labelled it eczema and gave me the usual barage of creams to try.  I have to say it was a relief just getting a name for this thing and realising that it is quite different to other forms of eczema.  Not so happy though when I found out there is no known cause and no real cure.  A few months ago my doctor referred me to a dermatologist who immediately labelled it contact dermatitis, gave me another cortizone cream and preceded to do a patch test of about 70 items.  I reacted to nickel and having read up on pompholyx have found that it is not uncommon for sufferers to be allergic to nickel.  However, nickel is not something I come into contact with so that didnt help me in trying to eliminate a possible trigger.  The dermatologist also started me on UV but after a month there was no change and in fact it was spreading onto other fingers.  Then he added Diprosone ointment under occlusion, and Prednisolone tabs, of which I have now had two courses.  Still no improvement.  Then he announced that it was Pompholyx.  Next we moved onto PUVA and after 3 weeks, 3 times a week, there is still no change.  Two days ago I discovered blisters on two fingers of my left hand and the associated itching started.  I saw the derm again on Wednesday.  His response was to start on Methotrexate and sent me off for a blood test with a view to starting the meds today.  I read up on it and decided this is not for me!!
My history with this disease is unusual in that I have yet to come across anyone else who has had a similar experience.  Hence the reason for my being on this forum now, 'cos it's a big world out there and you never know who else might have some insight if you dont share.
Both my mother and grandmother suffered with this plight.  I dont know anything about my grandmothers situation, only that she had it.  My Mum started with it just after she had me and it continued after the birth of my brother and for a further 7-8 years.  It would come and go over the years but the attacks were always very severe and debilitating.  Eventually as she entered her 30s it stopped and never came back.  In my case I started having my children when I was 35 and it was shortly after that I noticed the blisters on my fingers.  It was very mild to begin with, maybe only one or two blisters which would dry up over the week and it was usually apparent during summer months.  I didnt think too much of it at the time, but over the next few years it got worse.  It was 7 years before I fell pregnant again and at the time I was having a severe attack on my right thumb.  As soon as I discovered I was pregnant the pompholyx seemed to clear up almost overnight.  Sadly, I miscarried at 12 weeks.  Three weeks later, the itching and blisters started again, this time on my right pinky and progressed quickly to a swollen scaly scabby itchy mess.  Six months later I fell pregnant again.  The pompholyx cleared completely, again almost overnight.  Throughout my pregnancy and subsequent breastfeeding period, I had not a single itch or blister and my skin looked great.  Stopped breastfeeding and started itching again within a week.  Over the past 18 months it has progressed from 1 finger to 6 and has been ferocious in nature.  I'm 44 now and have noticed the signs of pre-menopause over the past 8 months.  I have told both my GP and the derm about this pattern and they have both looked at me as if I have two heads.
Does anyone out there know if any research has been done to link hormone levels and pompholyx.  Sorry to all the fellas out there with this thing, as I guess my experience doesnt help you one jot.
Hoping to hear something promising......

Offline Sarkishy

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Re: Another Pompholyx case
« Reply #1 on: Thursday November 13, 2008, 04:07:54 AM »
I have something similar.....google "autoimmune progesterone dermatitis". I found this only a few days ago, but maybe this is something you can bring to your physician.

Take care :)

Offline happeeturtle

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Re: Another Pompholyx case
« Reply #2 on: Tuesday December 16, 2008, 10:43:57 PM »
Hello...I've had the bumps on my hands for about 8 months and have recently started getting them on the bottom of my feet.  I was diagnosed with Pompholx about 3 months ago and found the Psoriasis cream "Taclonex" works the best for me.  I was curious if either of you have had joint pain or swelling??  About 4 months ago my right elbow stiffened up and I could no longer straigthen it.  I also had the lymph nodes in my collar bone slightly enlarged.  They've tested me for leukemia, lymphoma, lupus, gout, rheumatoid arthritis and several other joint diseases and are now looking for rare autoimmune diseases.  A few weeks ago I had surgery on my elbow to drain all the synovial fluid and they are running more tests, but so far everything has come back normal.  I googled the autoimmune progesteron dermatitis and couldn't find much on joint pain, so just thought I'd ask to see if anyone else was going through something similar, as the rest of it sounds like a match.

Appreciate you reading  :)
"Be kinder than necessary, for everyone you meet is fighting some kind of battle." - T.H. Thompson and John Watson