Hi

[sazzles]

Hello everyone

I've been checking this sight out for a few days now and finally built the courge up to write something.  Don't really know what to say so i thought i'd tell you about my p.

Must say this first, i think this sight is great - theres loads of useful info and its great to see how others with p cope.

I've had p for 17 years now.  It started when i was 11.  i spent most of my teens at hospital having uvb, coal tar treatment (very smelly) and other stuff (can't think of the name but it was a yellow paste and it used to burn) .  I seem to have very stubburn p, cause i was spending at least 10 months a time having treatment at the hospital.  Anyway the derm decided to put me on mtx then on cyclosporin, then on both together, which has kept my p at a managable level.  I've been on mtx 15mg and cyclosporin 100mg twice a day, for 8 years now - with no real side effects thankfully (after reading some of the side effects others had i think i've been very lucky)

Just recently had a flare up cause derm reduced my tabs - had forgotten how bad it gets - have been on a real downer  :snif:.  In all the years of seeing my derm this was the first time I balled my eyes out - don't think he really knew what to do.

Anyway sorry if i've bored you all.

Bye bye hope you all had a fantastic easter ((:y

One question - from reading this sight alot of people are only on mtx or cyclosporin short term only, should i be concerned at the length of time i've been on them?

[karen1]

Hi and welcome,

I only joined a few weeks ago on behalf of my 10 yr old daughter who is the p sufferer. Ive had lots of support.

Good luck

Karen and Kim x

[Stuart]

Hello and welcome  

I've been lucky in so far as coal tar and uvb have brought my P under control.

I am sure someone will be along to answer regarding your question.

[david_8]

hi, sazzles
and wellcome' regarding your question
i was informed by my pain consultant, nearly all pills
are toxic,eg piosion, and there are limits,
he told me if he had prescribed mtx he would only
allow me 2gm in total over a long term, having dealt and
researched this drug over along time.
so research surf the net. try this 1 first
You are not allowed to view links. Register or Login
there are millions of sites out there  for every paper you find a+ you will find a neg, "so take your pick"
all the best

[SJ]

Hello and welcome  

I am sure that you have been carefully monitored by your derm and so, as yet, you have had no need to come off either. It is not unusual for people to be on MTX for many, many years without a break. I have met someone who had been using it for 11 years!  

As far as Cyclo is concerned, because of cost derms usually use it for a short term (to get a bad flare under control etc). But it can be used long term if monitored carefully. It seems more and more people are being offered it because it may have got cheaper or, as my derm says, it is one of the best drugs available for P clearance.

But if you have suffered a flare up the derm may have decided that it isn't working for you anymore...?

What other options has he offered you?

Keep posting and let us know how you get on  

SJ

[sazzles]

Hi

Thanks for your replies  

Have to say the coal tar was one of the worst treatment i had (but it did work) it was messy and very smelly...........

Ah and i remember the horriable yellow paste - it is called dithrinal(whoops can't think how you spell it) this is definitely the worst treatment i've ever had.  It used to burn me big time horrible stuff to get off.  Is there anyone out there that actually found dithrinal a good treatment?

I had a flare up cause derm decided to reduce my tabs - things are improving now that he's uped them again.  As for other  options he has none at present i tend to tell the doctors what i need.  I currently using dovernex aswell as cyclosporin & mtx but can only use it 3 times a week due to the amount of p.  Derm has told me about the new self adminstrated injections which should be available in next 12 months.  I've been told by derm i will be one of the luckly ones to get this as soon as it's available (fingers crossed).

Again thanks for your responses.

[Guy]

HI sazzles

Welcome from me too.

guy  

[Keith74]

Welcome from me too !!

Rgds,

Keith

[SAUCY]

hiya sazzle's  

[rachd]

Hi and welocome.

I have just started the cyclosporin route with great effect.