Hello from wooleyb

[Wooley]

You could mention to the dermatologist the drug I'm on Fumaderm ....it's a brilliant drug if you can tolerate it and if they will prescribe it  see Jims continued use of Fumaderm

Thanks Jim, had a read through your thread and it certainly seems a option, really pleased that it has worked for you.  I am due to see a consultant in September mid way through PUVA so will ask the question then, test the water so to speak, see what he says!!!  At least I will know one way or the other I guess if they are willing to prescribe it....

[jiml]

You could mention to the dermatologist the drug I'm on Fumaderm ....it's a brilliant drug if you can tolerate it and if they will prescribe it  see Jims continued use of Fumaderm

Thanks Jim, had a read through your thread and it certainly seems a option, really pleased that it has worked for you.  I am due to see a consultant in September mid way through PUVA so will ask the question then, test the water so to speak, see what he says!!!  At least I will know one way or the other I guess if they are willing to prescribe it....

They seem reluctant as it's not a licences drug .....but it can be prescribed by hospitals ....it's the drug that gave me my life back ....it's not easy at the start ....but generally if you get side effects they pass after a month or so ....and then just enjoy the odd flush ....it's not a poison and if monitored will not do damage to your organs .....I feel safer on this than Methotrexate ...and have great confidence it it as a long term treatment

[Wooley]

You could mention to the dermatologist the drug I'm on Fumaderm ....it's a brilliant drug if you can tolerate it and if they will prescribe it  see Jims continued use of Fumaderm

Thanks Jim, had a read through your thread and it certainly seems a option, really pleased that it has worked for you.  I am due to see a consultant in September mid way through PUVA so will ask the question then, test the water so to speak, see what he says!!!  At least I will know one way or the other I guess if they are willing to prescribe it....

They seem reluctant as it's not a licences drug .....but it can be prescribed by hospitals ....it's the drug that gave me my life back ....it's not easy at the start ....but generally if you get side effects they pass after a month or so ....and then just enjoy the odd flush ....it's not a poison and if monitored will not do  damage to your organs .....I feel safer on this than Methotrexate ...and have great confidence it it as a long term treatment

Well I can only ask the question and to be fair Liverpool Doctors / Hospitals I have seen have been great to me over the years so you would like to think that they would at least consider it.....

[jiml]

You could mention to the dermatologist the drug I'm on Fumaderm ....it's a brilliant drug if you can tolerate it and if they will prescribe it  see Jims continued use of Fumaderm

Thanks Jim, had a read through your thread and it certainly seems a option, really pleased that it has worked for you.  I am due to see a consultant in September mid way through PUVA so will ask the question then, test the water so to speak, see what he says!!!  At least I will know one way or the other I guess if they are willing to prescribe it....

They seem reluctant as it's not a licences drug .....but it can be prescribed by hospitals ....it's the drug that gave me my life back ....it's not easy at the start ....but generally if you get side effects they pass after a month or so ....and then just enjoy the odd flush ....it's not a poison and if monitored will not do  damage to your organs .....I feel safer on this than Methotrexate ...and have great confidence it it as a long term treatment

Well I can only ask the question and to be fair Liverpool Doctors / Hospitals I have seen have been great to me over the years so you would like to think that they would at least consider it.....

worth a try

[D Foster]

Just a quick thought, I know that everyone is different and the side effects are the same but when I was on acitretin  I had problems with ingrowing nails especially toe nails so just keep an eye on that.

Oh blimey!! this drug sounds more and more appealing - NOT!! lol!  Well thanks for the advice, I will see how it goes with everything else they are giving me/suggesting to me before I make a decision on acitretin.....   I started PUVA treatment today, not holding out much hope for that though but fingers crossed for a little improvement, even if it is short term.... It is certainly confusing all the things out there it would seem....   thanks for the heads up though Dave....

Everyone is different wooleyb and so are any side effects that you can get but if you know what may happen then you can be prepared.

[Wooley]

Just a quick thought, I know that everyone is different and the side effects are the same but when I was on acitretin  I had problems with ingrowing nails especially toe nails so just keep an eye on that.

Oh blimey!! this drug sounds more and more appealing - NOT!! lol!  Well thanks for the advice, I will see how it goes with everything else they are giving me/suggesting to me before I make a decision on acitretin.....   I started PUVA treatment today, not holding out much hope for that though but fingers crossed for a little improvement, even if it is short term.... It is certainly confusing all the things out there it would seem....   thanks for the heads up though Dave....

Everyone is different wooleyb and so are any side effects that you can get but if you know what may happen then you can be prepared.

Yeah I know, just all feels so daunting but you are right, I will be well prepared which is the main thing....

[JohnB]

Just a quick thought, I know that everyone is different and the side effects are the same but when I was on acitretin  I had problems with ingrowing nails especially toe nails so just keep an eye on that.

Oh blimey!! this drug sounds more and more appealing - NOT!! lol!  Well thanks for the advice, I will see how it goes with everything else they are giving me/suggesting to me before I make a decision on acitretin.....   I started PUVA treatment today, not holding out much hope for that though but fingers crossed for a little improvement, even if it is short term.... It is certainly confusing all the things out there it would seem....   thanks for the heads up though Dave....

Hi Woolyb and welcome   Sorry I've been kind of tied up and only just caught up with your post.

Acitretin - yes a lot of people give it bad press and some of the side effects can be at best unpleasant. But there is always one,   I found that they were well worth putting up with to be itch free and have a full nights uninterrupted sleep. I'm now back on to it for a second stint. The Dermy took me off because I was having a run of persistant headaches. I started off on 25mg, went to 30mg and dropped back to 25mg when it was stopped. After some discusssion it was felt that it was best for me to go back on at 10mg and see how it goes.

I would say give it a go, but be prepared for a long wait for anything to happen. Quick it aint. I think I was 12 weeks before any appreciable clearance was seen.

Best of luck if you decide to go with it. If you need to ask any questions, ask away and I will do my best.

JohnB

[Wooley]

Just a quick thought, I know that everyone is different and the side effects are the same but when I was on acitretin  I had problems with ingrowing nails especially toe nails so just keep an eye on that.

Oh blimey!! this drug sounds more and more appealing - NOT!! lol!  Well thanks for the advice, I will see how it goes with everything else they are giving me/suggesting to me before I make a decision on acitretin.....   I started PUVA treatment today, not holding out much hope for that though but fingers crossed for a little improvement, even if it is short term.... It is certainly confusing all the things out there it would seem....   thanks for the heads up though Dave....

Hi Woolyb and welcome   Sorry I've been kind of tied up and only just caught up with your post.

Acitretin - yes a lot of people give it bad press and some of the side effects can be at best unpleasant. But there is always one,   I found that they were well worth putting up with to be itch free and have a full nights uninterrupted sleep. I'm now back on to it for a second stint. The Dermy took me off because I was having a run of persistant headaches. I started off on 25mg, went to 30mg and dropped back to 25mg when it was stopped. After some discusssion it was felt that it was best for me to go back on at 10mg and see how it goes.

I would say give it a go, but be prepared for a long wait for anything to happen. Quick it aint. I think I was 12 weeks before any appreciable clearance was seen.

Best of luck if you decide to go with it. If you need to ask any questions, ask away and I will do my best.

JohnB

Hi John   ah no problem, you peeps are all very kind and extremely helpful in your advice....... well it hasn't got to the point just yet where they are suggesting Acitretin but do think its in the pipeline that for sure.....I will be sure to holla if and when they suggest it for all your invaluable advice.... thanks for the welcome..... 

[jiml]

Hi Wooley....how's the PUVA treatment doing ? Is it having a good effect on your PPP yet?

[Wooley]

Hi Wooley....how's the PUVA treatment doing ? Is it having a good effect on your PPP yet?

Hey Jim.......

Not going great i have to say, I guess i have to give it time though...... Its my third treatment tomorrow and absolutely no change as yet....... If anything my hands are worse but I do think my PPP flares up with stress and i am very stressed