New Here - My P History

[MissBee]

Firstly, after reading some of your stories I am feeling very lucky my P isn't that bad compared to some.

Mine started when I was 11 - guttate with spots here and there.
After that I had patches on my elbows and scalp only until I was 21.

At 21 I got a sore throat (strep virus) and within 2-3 weeks I was literally covered from head to toe.  I had so many individual spots on my back that they all joined up and when I bent over my back would bleed (used to moisturise with petroleum baby vaseline).  A course of UVB was unsuccessful, but a course of PUVA soon had me clear.

I am 34 now and have had flare ups (luckily never quite as bad as the one I had at 21), but about 4 severe enough to warrant a sessions of PUVA (the last being last year).

TIP:  My flare up last year came 8 weeks before a trip I had planned to South Africa.  I was desperate to be P free before the trip.  My GP referred me to the hospital and I was told it would be at least 6 months before I could start PUVA.  In desperation, I paid £100 to see a private consultant who was very understanding and referred me for PUVA immediately!!  I started within 7 days and was totally clear before my trip to South Africa.  The irony is - I had the treatment free of charge at the same hospital that said it would take at least 6 months.  THE BEST £100 I HAVE EVER SPENT!

The consultant that I paid to see was the first to suggest having my tonsils out.  My P always follows a sore throat.

Well.... they were whipped out last week, I am still extremely sore and just hoping that this is going to work.  I have nomimal P at the moment - maybe 40 spots randomly scattered over my body but with a lovely head full of it!! Grrrr...

Well... that is my P history, very sporadic, mostly mild, sometimes horrid!

PUVA in summer is awful, because you have to cover up in thick tights and polo necks because of the photo-sentsitivity after taking the tablets.  In winter it is awful because you wear dark glasses like a right twit.

So... here's to hoping no more tonsils means no more P for me

[jjoblogs1]

 ((:y Hi Missbee and welcome............

[SJ]

Hi Missbee and welcome.

UVB does nowt for me either, so back in PUVA next week to get rid of the P that has spread since having failed UVB over the last 3 months. Isn't it strange that UVB does nothing for us, but PUVA is the (Miss)Bees Knees?  

I can't say I worry too much about the sun sensitivity thing. I just go about my normal business with the ol' sunglasses on. I am just delighted to be having a treatment that clears up my P for 4-6 months  

Look forward to your future posts

SJ

[elaineG]

Hello and welcome

[MissBee]

SJ.... does anyone keep a record of the amount of joules you have had??

Where my PUVA has been carried out at 3 different hospitals over the years, my records have become pretty scattered.  

As per my post... I have had my tonsils removed in a bid to cure me of P.  Mostly, because I am scared of just how much exposure to radiation I have had over the years.  It is not just the PUVA, but sunbeds, xrays, scans etc etc.  

Someone mentioned to me 1000 joules was around your max, but nobody could tell me for sure where on the scale I was already.

I'd be interested to know if you... or anyone... has monitored jouled records.

[loopyloo]

Hello, not sure about the joules question but there was a discussion i saw a while back.... though i think the general just of it was that so many derms it varies with what you can have, there might not be a correct answer!!
But welcome!  

[lilaclily]

Wow! Money talk! Hi MissBee, welcome!
UVB didn't work for me either, like SJ, i'm starting Puva next week as well.

[scarletgail]

welcome missbee

[SJ]

It will be in your notes, scattered or not. I have had two sessions of PUVA and two of UVB at different hospitals. The notes swop between hospitals.

I have had a combined dose of 123 joules so far apparently and 90 sessions as well.

The 1000 joules limit is a 'guideline'. Some people with fair skin who burn 'could' be at risk if they go higher than that, others, like me with darker skin who never burn, will go over.

My derm is very easy going. As someone who has never burnt in her life (and never sunbathed until one holiday last year!) and has controlled UV in a derm environment, he has the attitude that UV is good for me and my P. He says the max joules is a guideline that can be 'broken' if the skin is checked carefully (which mine and all P patients is).

Remember, most P sufferers do not go to Spain once a year and frazzles themselves and we have our skin checked by derms often...those Spain sunbathers are more likely to be at risk than us!

SJ

[lulu]

hi MissBee