intro

[ajc]

hello everyone.

I am 33 and have had p since i was 18. On the face , scalp and speckled over body. Have had all the creams etc .. they work but all have their pitfalls. uvb was great for the body but the face went back to 'normal' after a week or two. Went to the derm last week and have now been put on the waiting list for Methotrexat. have read about it and am considering it, i need a break .

I am sure like many of you, p has totally affected your lives like mine. Relationships , employment , your happiness all aspects . Most people just dont get it and dont understand the grip p has. Would be really happy with some feed back, thanks.

ajc

[Fred]

Hello ajc and to the forum. You are right a lot of people including some Doctors just don't understand. but we do, and there is nothing better than talking with others who understand. just post away, this forum is still new and needs everyone's input.

There are some threads on the old forum that may help, have a look Here! EDIT The old forum is now closed

Micky has started a thread about it on and it could be worth you having a look and get talking to him. you can find it here: Methotrexate and Micky

And if you can catch Lost she knows more about it. look forward to your input and just shout if you need anything.

Regards.

Fred.

[mickyfinn007]

Hi ajc, Just read your thread, not quite sure why you have to go on a waiting list for Methotrexate......??????
After I exhausted all other forms of treatment, I saw my dermatologist, had some blood test's, bingo, got the prescription straight away, although the regular monitoring can be a pain, but that is only in the early stages of treatment.
I have just gone into my 8th week of my Methotrexate treatment, and I am now starting to see some early results.
I am now finding that the scaling on all of my patches, is significantly less than what it was.
It does take a good few weeks to get into your system, so don't expect instant results.
I have had no apparent side effects at all, and was put up last week from 7.5mg to 10mg per week, you take this once a week and on all the other days you take 5mg of Folic Acid.
I have to have another blood test next week, then I attend the hospital to see my Consultant the week after.
Summary: At the moment the treatment seams to be going in the right direction, I'll keep with it and see how it goes.
Any questions just send me a PM.
Best Regards
Micky.

[ajc]

Hello Micky.
The derm said there is a 6 month waiting list to see the consultant. Of course she told me all about the side effects and told me to have a good think about it. But from what i have read its a well established drug and as long as the user is well monitored its safe. In the meantime i will go for another course of uvb.
I feel that for the first time in years i am getting somewhere with the derm , i have had to inform myself on whats available and insist on the next kind of treatment. If i didn't, i would be going home with nothing but steroids.

[Fred]

I have had to inform myself on whats available and insist on the next kind of treatment. If i didn't, i would be going home with nothing but steroids.

Very good point and more people should do this. after all it's your body and your in charge of it not your Derm.

[ajc]

Hello Fred .Thanks for your reply.

it is an important point. i always felt that you need to be prepared for the derm or even any visit to the gp. There are all kinds of treatment , and there is also a reluctance from the nhs to progress with them. this is what i have experienced .
There is all kinds of new information out there some carried out by the medical professionals and a lot of good info from other peoples personal experience with their p. i think its all valid , but it seems that the people i look to for advice ie my doctor etc.. are not open or up to speed on whats going on out there. Diet is just one such issue , and one which i am currently looking into and willing to explore.
Andrew

[mickyfinn007]

A valid point, I agree, but I was told that because I did 26 sessions of UVB, that I could not do another course inside the next 12 month's.
So that is why I demanded that I see a consultant, so that I could advance with other treatment.
UVB worked for me in the short term, but it all started returning within 10 wks, so something further had to be done.
Regards
Micky.

[Lostintranslation]

Hi and ajc! Glad to see you're taking charge and looking for new treatments, sadly with this condition we do have to just keep trying until we find 'the one'.
Methotrexate...... you will hear a lot of people say bad things about it, but I would say give it a go. Yes, it can have some side effects. Yes, you need to be closely monitored with regular blood tests. But Yes it can work!
I can honestly say the state I was in when I was given MTX it saved my life. It started to help within days though usually it does take a good few weeks to notice any significant results.
One thing I would say is don't read the information leaflet too closely as it's full of things that will terrify you if you take them seriously. I remember reading everything before taking my 1st dose then lying in bed waiting to die (I was absolutely sure those little pills I just swallowed would kill me before the morning ). Obviously they didn't
So certainly if you can try it, do so. It may not be the treatment for you, or it may be your wonder drug. Only one way to find out!
Feel free to message me or ask on the forum if you have any specific questions about it or anything else and I'll do my best you help.
Lost.

[ajc]

Thanks for that Lost.

It will be a while before i get the go ahead, but if its offered i will take it. It is a new direction but one i feel i must take . The risk is worth it. I have six weeks of ubv , see the derm again ,and then push for mtx. The uvb unfortunately has only a short term affect on my face, which is really the most troublesome area for me. so hopefully the mtx will do the trick.

ajc

[mickyfinn007]

Well done mate, nothing ventured nothing gained, and all that!!!!
Good for you.
That's just the sort of cavalier attitude I had to take, just to get things moving.
It does help if you see the Derm, and YOU tell them what YOU want.
Good Luck with it,
Regards,
Micky.