End of my tether

[Fred]

Fred I'm sure it is being prescribed fairly widely in the uk now.

That's good to hear, they are starting trials here in France soon.

Hi, well slept a little better last night only woke twice and itch has reduced a little with the new meds.

Thank you for all the info, I am going to become much more proactive in my care and treatment prescribed.

I just wanted to say a big thank you to everyone, I can honestly say the other night was possibly one of the worst I have experienced with pain, itch and mood etc.

You're very welcome Sandra, you will find there is usually someone about to lean on when you need it. Good to hear you're feeling a bit better, do keep us informed and don't be a stranger as you may be able to help others.

[Caroline]

Sandra,
I agree with the guys and good that you went to the GP.

My order of working would be to go for fumaderm, DMF, with some painkillers the first weeks before it starts working.
DMF is quite harmless and you have a 70% chance of working.
If it does not work try to go for Stelara.

Why this way, well it seems that if you start with Stelara and for some reason stop with it, that than the psa comes back quite heavily. It then seems quite difficult to restart or change to another therapy.
In my proposed way there will always be Stelara on the backup side, if DMF would not work for you.

Indeed as Jim says, just throw everything off you that you need to in the forum. We will always be here to listen to you and react to you.
Most of us have been in alike positions. Me too have been not able to lift a coca cola bottle, because of the pain in my fingers.

I would just add Caroline, Fumaderm may not be available to Sandra as it's still early days with the UK as is Stelara and they probably won't offer it yet. And as far as I know your form of DMF (Psorinovo) is not available in the Uk, I only mentioned this as I didn't want to build up her or anyone's hopes of getting said treatments offered after light therapy.

You are right in some respects Fred in that it is not widely available but there have been one or two Scottish members that have been prescribed I noticed when they have joined although I don't think they have posted, it's certainly getting prescribed more as the cost is not great

Psorinovo can be ordered from the Netherlands without problems. But the problem... then is that you will have to pay for it yourself.
Bill has the cheapest solution.

[Sandra]

Hi everyone,
Although I have not posted on the main thread for some time, I have kept in touch with Jim, who bless him hung in even when I was extremely low.
Anyway over the last six months I have been attending the hospital every week at first 5 days a week and then down to three. I had refused admission to hospital. I was receiving tar treatment which was fantastic, I have to say. I was practically clear when they gave me dovabet to clear the last bits. Unfortunately I reacted to the dovabet and it triggered the psoriasis again. It came back so quickly it was unreal! Worse it made me super sensitive to the tar! So consultant said that my psoriasis is really aggressive and explained that with each flare I was actually becoming quite unwell with it. I had swollen joints, temperature, fatigue, back pain worsened etc.. She finally persuaded me to try one of their drugs.
I have to say, that the consultant and nurses have been amazing and extremely patient with me. They took on board how I felt about the drugs and my fears of side effects. So she came up with Acitretin, which as you all know still has side effects but not malignant ones.
I started on this 4 days ago and so far no side effects! In fact although I am aware it should not work quickly, I got up this morning and it appears flatter, so much so that even my husband commented on it! The scale is nowhere near as thick, my itch has reduced and so I am feeling better already. I have had 2 full 6 hours of sleep, which is incredible as I usually have around 4 and that was broken. Long may it continue.
So I'll keep in touch and let you all know how it goes.
Sandra

[Caroline]

Well that looks like a good foresight Sandra.
We have several members on Acetretin who have very good results with it, so on you go !

Hope we can receive more good information from your side the coming time.

Cheers,
Caroline

[jiml]

Hi everyone,
Although I have not posted on the main thread for some time, I have kept in touch with Jim, who bless him  hung in even when I was extremely low.
Anyway over the last six months I have been attending the hospital every week at first 5 days a week and then down to three. I had refused admission to hospital. I was receiving tar treatment which was fantastic, I have to say. I was practically clear when they gave me dovabet to clear the last bits. Unfortunately I reacted to the dovabet and it triggered the psoriasis again. It came back so quickly it was unreal! Worse it made me super sensitive to the tar! So consultant said that my psoriasis is really aggressive and explained that with each flare I was actually becoming quite unwell with it. I had swollen joints, temperature, fatigue, back pain worsened etc.. She finally persuaded me to try one of their drugs.
I have to say, that the consultant and nurses have been amazing and extremely patient with me. They took on board how I felt about the drugs and my fears of side effects. So she came up with Acitretin, which as you all know still has side effects but not malignant ones. D
I started on this 4 days ago and so far no side effects! In fact although I am aware it should not work quickly, I got up this morning and it appears flatter, so much so that even my husband commented on it! The scale is nowhere near as thick, my itch has reduced and so I am feeling better already. I have had 2 full 6 hours of sleep, which is incredible as I usually have around 4 and that was broken. Long may it continue.
So I'll keep in touch and let you all know how it goes.
Sandra

This is really good to read and I thank you for making your experience public as Fred always says it may help someone else in similar circumstances, you have really put yourself through the mill , but I'm glad you have relented and gone down the route of conventional treatment ( acetretin) and it is showing signs of working so soon, be prepared though for the chance that the changes may slow down, but don't be downhearted if that should happen. It is a slow working treatment, but if it works and it looks as if it may, it should be a long lasting clearance..
Do keep us updated as good news like this is very cheering in the morning
Jim

[Fred]

Hello Sandra good to see you back. Yes our Jim is a godsend to some of our members, he is always willing to listen especially to those that don't feel comfortable posting on the forum.

Dovobet can cause problems like you mention. You were lucky and being monitored, but unfortunately it often goes unchecked with a lot of GPs continuously shoving it out.  

It sounds to me that it is time for you to move on and Acitretin is a good start. So good luck with your journey, and please do keep us updated as like Jim said your information could help others.

[Kat]

Best of luck Sandra! It looks like Acitretin may work well for you.

[Sandra]

Hi there
So exactly one week on acitretin and I am not sure that this should be working as quick as it is, but it is! I have hands with nearly normal skin! My legs, arms and back are no longer scaly but flat. My head has stopped itching! It is incredible! I only have one side effect and I am not even sure it is one ( could be a bug) I am extremely tired so much so that I actually took the day off work. But do you know, I don't care, I have skin that is on its way to being normal!
Not that it will mean much to the guys on here but I have actually been able to shave my legs for the first time this year!
As for taking the day off, even that was positive , as I was so tired, my son mowed the lawn that I was going to do last week but didn't get around to, he cooked my dinner and walked the dogs! Result!
I'm sitting with my feet up, book in hand and bar of chocolate, feeling good.
I am trying to not get my hopes too high as I realise I still have blood tests go and am hoping they will be o.k. I know side effects can happen over a period of time but do you know, right now I am just going to take pleasure in what's happening at this moment. I can't stop touching my hands, it has been years since they looked like this.
I will let you all know how next week goes but for now back to my chocolate and book.
Sandra

[Caroline]

Really great to hear Sandra      

I am very  happy for you and your results !  
Enjoy

Certainly hope for the bloods to be good.  

[jiml]

Yes Great news .... it is quick but as you say enjoy the euphoria of a clearing skin. It seems as if you and acetretin were made for each other
This is such good news to be reading. Keep your hopes high Sandra ... This is the most positive I have heard from you and I hope it continues to get better and better
And I know what you mean about shaving your legs