Condition worsening

[Garf71]

Hi all, 

I have been taking snippets of advice from your site for a good while now and finally got around to joining up.

I have been prescribed Acetretin and if anything my condition seems to be worsening and i wondered if anyone else had experienced this.

My lepery history in brief......
My condition started around 1995 when I was 24 with scalp psoriasis, I have large coverage on both my upper and lower legs, elbows, arms back, scalp, ears, basically all over.

In the last 12 months my condition has worsened and often gets me really down, I am sure you all appreciate the time when summer finally arrives and everyone is in shorts, but you cant wear them or go swimming because your condition looks so unsightly. I could really start moaning, but that wont get me anywhere!

Up until recently I have been using Dovabet ointment and I have tried courses of UVB treatment. The UVB was moderately successful, but it took up so much of time I bought my own UVB machine for home with the same lamps etc, ensuring I recorded my usage and didn't over do it. 

I started a course of Acetretin back in July and my back has never been worse, I have a new outbreak on my shoulders and this weekend an outbreak on my chest, I have been to the clinic this morning to see the nurse, who has booked me another appointment and suggested im considered for a course of Methotrexate or Ciclosporin, Im concerned that I cannot consume any alcohol while using Methotrexate, (I'm no heavy drinker, but do enjoy a few beers with my friends and a bottle of wine or so with my wife).

I could waffle on for hours, but I guess my real question is has anyone had any similar experiences to me and can they offer me any advice.

Finally, I have private health (Bupa) has anyone gone down this route and is the treatment any better / quicker?

Thanks in advance

[Fred]

Hello Garf71   to Psoriasis Club.

We have a few members on Acitretin, if you put it in the search facility it will throw out some threads. *You need to be logged in to use the search.

Yes it's a no no with alcohol and methotrexate. Some say you can have a little, but it's not recommended.

I can't help with Bupa though some do get Stelara through Bupa, but I think it's funded by the NHS. If you have your own Bupa then I would go via them, but first contact them and ask about dermatology. I would have thought you would get better/faster treatment with them if dermatology is covered.

Regards.

Fred.

Oh and well done for finally joining us.  

[jiml]

Hi Garf it's great you choose to join up with us, so   welcome to the club if you have been following you will have noticed that the site is very friendly and all sufferers and families are made welcome and are invited to join in with the posts. As I said we are all in the same boat but coming here does help to understand the disease better and gives a platform for us to ask questions and offer advice from a patients experience. And exchange views

How well I remember those dark and awful days when it was scorching hot and I was the only one on the beach in trousers and long sleeve shirt ( unless the beach was deserted )
You are right of course we can all keep moaning and let it get us down, but that doesn't help in fact it often makes matters worse ( stress as a trigger)

I'm sure some of the acetretin crowd will be on at some point to advise you, but although I have not been on acetretin it is reported here by members that it can get worse before there is any improvement, I know that's not what you wanted to hear but if you use the search button at the top of the page and put acetretin in it will give you lots of threads to read

To be honest I don't think it makes any difference to the treatment you will get going to Bupa, as my experience was a few years ago ,they won't take over an existing condition, they might have started if they had diagnosed you ....I gave it up because they wouldn't cover my psoriasis ...but give it a go

Methotrexate can be effective but it tends to be a harsh drug and not my favourite
Hope to hear more from you
Jim

[Garf71]

Thanks for the responses, as recommended I had a look through the acetretin posts and found the side effects similar to mine, so thanks for that.

My Derm has suggested I also go back to using the topical oinments, (Dovabet) alongside the acetretin, which I will follow, but on reading posts on the site (I will get some work done today, I promise) there seems to be a lot of love for the use of coconut oil, but should this be used in addition to dovabet or instead. I should imagine dovabet is fairly impenetrable where coconut oil is concerned, maybe use coconut oil 1st?

Thanks again and hope the questions are not too daft!

[Fred]

Thanks for the responses, as recommended I had a look through the acetretin posts and found the side effects similar to mine, so thanks for that.

My Derm has suggested I also go back to using the topical oinments, (Dovabet) alongside the acetretin, which I will follow, but on reading posts on the site (I will get some work done today, I promise) there seems to be a lot of love for the use of coconut oil, but should this be used in addition to dovabet or instead. I should imagine dovabet is fairly impenetrable where coconut oil is concerned, maybe use coconut oil 1st?

Thanks again and hope the questions are not too daft!

No question is too daft. We do have some daft members (Grizzly Bear is a good example   ) but you just ask questions, no one will knock you for your questions. If they do, let me or a forum helper know and it will stop.

Dovobet should only be used for 4 weeks. I'm not sure about mixing it with Coconut Oil, maybe you could use Dovobet in the evening and Coconut Oil in the morning. I'm a big fan of coconut oil but it's a moisturiser and not a treatment like Dovobet. You can read more about both in these threads.

Dovobet And Dovonex (What's the difference ?)

Coconut Oil

[Garf71]

Thanks again, I have been prescribed and have been using dovabet for years, I was only prescribed acetrtin as I insisted the treatment wasn't working for me and my body had got used to the steroids, so had to start and stop.

I will give the coconut oil a go in the evening, at least then my selfless, very understanding wife can have the benefit of me smelling like a coconut rather than feeling like axle grease!

There is some really good advice on here and while i feel I should let the acetretin work its course to see what difference it makes, there's so many other recipes to try, I particularly like the builders analogy of repairing like a damp wall "pierreblonde 11/15" who's remedies I am tempted to try.

Good to know my side effects are not dissimilar to other users, such as flaky palms, itchy back and in particular, having the side effect of a greasy mouth, similar to that of eating a cheap sausage roll, which I experienced a few weeks ago!

A big shame, but sadly reassuring to know I'm not the only one experiencing this lepery life! 

[JohnB]

Hi Garf and welcome to the club 
I've been on it since April and it did get slightly worse initially and did have a few small outbreaks that weren't there originally. As you well have no doubt read this stuff is a slow burner, mine is only now showing significant signs of reduction and yes the flaky palms are a nasty, but not as bad as the delaminating feet  . If you have any questions, dont hesitate to ask they will be answered truthfully from fellow sufferers that don't have an axe to grind or something to push.
JohnB

[KyPrincess]

Hi Garf. Welcome to the club!

[Turnedlight]

Hi there

[Caroline]

Hi Garf,

Welcome to psoriasisclub.
Indeed it seems the best way to stick with the acetretin for a while, read the posts of the acetretin users and perhaps ask them specifically your questions.

It it does not work, there are other treatments like Stelara but there is also still the systemic DMF.

I myself have personally very much hesitations with methotrexate and cyclosporine, they have the ability to harm your liver and kidneys. There are certainly some who can cope with it, but I'm not among them.

Cheers,
Caroline