Hi there,
well not long back from the hospital and the consultant was willing to listen. She has recommended one of three drugs: Acitreten, Ciclosporin & Methotrexate. So she explained a bit about them, (which scared the life out of me) and asked me to pick which one I preferred!
I said I needed time to make a decision as these are pretty heavy duty. So I will be seeing her again in a fortnight and in the meantime I have had blood tests done and have to do another for my kidney function.
I know I should be jumping for joy, that they are finally willing to look at this seriously but the side affects seem horrible. She has also said I would only be on Acitreten or Ciclosporin for about 6 months then I would come off and that way if I had a bad flare up I would be able to go back on. So the only one longer term would be Methotrexate.
I really feel I am between a rock and a hard place. I can't carry on the way I have, but I am really worried by the potential side effects of these drugs. I know they don't happen to everyone but it seems quite a risk , when given as she says, when I come off them the psoriasis will return. Is actually worth it for 6 months. She has said other areas of the country keep people on them longer but that isn't the policy here. Spoke to the G.P. Who says he thinks they might be worth a try as my immune system he thinks is in overdrive!
So advice please. Have many of you had any of the serious side effects of these drugs or the not so serious but unpleasant?
Any help would be appreciated.
Sandra

Quick answer start here:

Methotrexate

Acitretin

Ciclosporine

Start by reading those.

Slightly longer and a more personal answer than my one above.

I've not tried Acitretin or Ciclosporin so can't comment personally.

I have however tried Methotrexate and all I can say is IT'S POISON It will make you sick, it will make your head go fuzzy, it will ruin your life probably more than living with psoriasis.

You asked for opinions, and some will say Methotrexate is good, but I would never touch it again and I wouldn't even consider Acitretin or Ciclosporin as they don't sound any better to me. To many nasty things going on and I like a drink.

If you want my opinion I would say "I have given it some thought and you can stick all three as far as you can get them, so offer me one of the Bio's or Fumaderm as I want my life back. But I want it back in good condition"

But that's just me.

See Fred,
That's exactly how I feel. It seems a bit O.T.T.
The side effects sound bloody horrendous and that's just the common ones, let alone if you were unlucky and got the serious ones!
I am reading about them but the more I read the less inclined I am.
Sandra

(Fri-26-09-2014, 14:44 PM)Sandra Wrote: See Fred,
That's exactly how I feel. It seems a bit O.T.T.
The side effects sound bloody horrendous and that's just the common ones, let alone if you were unlucky and got the serious ones!
I am reading about them but the more I read the less inclined I am.
Sandra

Well I can't see any point in going onto something for 6 months as it will come back and may even come back worse, psoriasis needs long term management (probably the rest of ones life) unfortunate they still push Methotrexate which can be used for longer than 6 months but like I said it's poison. You cant take alcohol as it will probably ruin your liver and when you read it can kill a fetus, that's enough to put any one off.

I would say, have a good read through those threads. Also use the search facility and type in the different ones to see what it throws up (*you need to be logged-in to use search) You may think it's worth giving one a try just to get it under control, then say after 6 months you would have more of lever to push for Bio or Fumaderm.

You have a couple of weeks, so take your time.

Hi Sandra looks like they are taking you seriously at last. It's unfortunate but a fact of our health service and it seems the same in most countries they have a procedure which they have to be seen to follow....
Myself I would opt for the methotrexate you are less likely to have a bad flare when you stop or at least I didn't ,
It is unpleasant but for me it cleared me but I hated it , don't get me wrong I was never sick but always felt unwell for a couple of days after taking them..... It's worth the side effect for a short while .
I say take them for a couple of month then complain they make you sick and you can't deal with it.
Ask for the next step which would be biologicals or Fumaderm I'm not sure if you will get Fumaderm as it seems to be listed for psoriasis but no mention of PSA... Although it will be good for PSA as it's the same ingredient that's in Caroline's medication for PSA
As Fred says you have two weeks to make up your mind.
It's worth listening to others experiences on here and they may help you make a considered decision.
Good luck

Thanks Jim
I will seriously read up and consider. I have to admit just the thought of them frightens me. The side effects just seem so serious. It does seem that they follow a certain pathway. I am surprised they are allowing me to choose which one. Which is why I asked for the time to research and then make an informed choice.
I feel a bit ungrateful, I wanted them to take it seriously, but now they have it's scary. I know I can't go on the way I have been, but as I said rock and hard place springs to mind. Also is it worth it for 6 months and then the psoriasis will come back. Even the Methotrexate she has said will not be permanent, but possibly up to a year.
Well I'll just have to get my thinking head on.
Sandra

(Fri-26-09-2014, 15:40 PM)Sandra Wrote: Thanks Jim
I will seriously read up and consider. I have to admit just the thought of them frightens me. The side effects just seem so serious. It does seem that they follow a certain pathway. I am surprised they are allowing me to choose which one. Which is why I asked for the time to research and then make an informed choice.
I feel a bit ungrateful, I wanted them to take it seriously, but now they have it's scary. I know I can't go on the way I have been, but as I said rock and hard place springs to mind. Also is it worth it for 6 months and then the psoriasis will come back. Even the Methotrexate she has said will not be permanent, but possibly up to a year.
Well I'll just have to get my thinking head on.
Sandra

Just had a thought Sandra, could they be dropping you a hint by saying make your choice as to which one but two are only for 6 months as a hint.

If you go for Acitretin or Ciclosporin you will have to change in 6 months, then they may be able to fast track you to Bio's as you have tried the protocol they have to follow.

(Fri-26-09-2014, 15:40 PM)Sandra Wrote: Thanks Jim
I will seriously read up and consider. I have to admit just the thought of them frightens me. The side effects just seem so serious. It does seem that they follow a certain pathway. I am surprised they are allowing me to choose which one. Which is why I asked for the time to research and then make an informed choice.
I feel a bit ungrateful, I wanted them to take it seriously, but now they have it's scary. I know I can't go on the way I have been, but as I said rock and hard place springs to mind. Also is it worth it for 6 months and then the psoriasis will come back. Even the Methotrexate she has said will not be permanent, but possibly up to a year.
Well I'll just have to get my thinking head on.
Sandra

Yes take your time, I have no experience of ciclosporin or acetretin but others have and I'm sure will offer their experiences and opinions
Just relax and I'm sure you will make a good informed decision when the time comes

Hi Sandra. I've been taking Acetritin for a bit over 5 weeks now. In my case, there is no chance of me getting pregnant so I don't have to have the pregnancy tests or worry about that. I admit, reading how a drug can damage a fetus and that you can't give blood for 2-3 years (depending on the site) after your last dose is a bit daunting putting this drug in your system! Most drugs come with some risks so I guess we have to decide for ourselves if the risks are less than living with the disease being treated.

As to side effects - I had a mild headache the fist day (or two) which may or may not have been caused by the drug. Since the doctor mentioned I might have a headache, I'll say it was due to the Acitretin but honestly I'm not sure about that one as it was mild and I haven't had one since then. The only other side effect I've possibly had would be a dry mouth. I normally have had dry mouth at times but this is a bit more and I tend to drink a lot more than normal. I've not experienced any other side effects.

Does it work? For me, I have noticed big improvements in some areas, small improvements in others. The small improvements would be on my ears, neck, scalp which were more the problem areas for me to begin with so I'm hoping these areas are just more stubborn and I will soon be able to see more improvement there. I'm also getting UVB light therapy so how much improvement is from the therapy or the drug, I can't say.

This isn't a recommendation for Acetritin, nor am I saying to stay away from it. My experience hasn't been long enough for me to give any more information than I mentioned above, plus we are each different and what works for one may not be what works for another.

Good luck with whichever path you choose to take.