New treatment options...????

[Caroline]

Biological treatments was the first thing I mentioned to the Doctor at the hospital yesterday, but they said we have to exhaust all the tablet options first.
I would imagine this is a typical NHS response...???

Best Regards to all
Micky

They first try all the cheap and "old" methods, while it is known that these very often will marginally help, and/but are quite bad for your health overall.
After that, they will change to more advanced methods.
Most of this is caused by the insurance companies, which is a short term strategy, as the cheaper method may damage so much that on the longer track more care and therefore more money may be necessary.

You see the same with Multiple Sclerosis. A "new" medicine has arrived, called Tecfidera, which is nothing more than the already known dimethylfumarates, which is working for MS. Unfortunately MS patients regularly already get another medication called Tysabri, the effect of this medication is implicit damage in such a way that other treatments, like Tecfidera are not possible anymore.
Btw... Tecfidera is 42 times more expensive than the equivalent we have over here...

[Amy]

Hi Micky,

I'm based in the north east and recently decided steroid cream was not working and the P finally got to me.

I was basically told that on the NHS they start with cheaper options due to cost of biologicals and I accepted that as I was happy there was any alternative to steroid creams.

I went on mtx and lasted 2 doses, was run down, sick, got a cold at same time asy husbnd and his cleared in under a week and I was still unwell 6 weeks on and usually resilant to germs. My first week's blood work was off too. I struggle to swallow tablets and on that basis I was told ciclosporin were massive and that was enough for me not to have to try them! Was also told if I was planning a family I could t have them either.

I do believe in the NHS as a whole but the sucess rate of bio's versus tablets seems to make cost unimportant but its easy to say that when you suffer from P. Pretty sure the person who makes financial decision will just see it as a bit of dry skin!

My consultant says he has about 60 patients on bio's and I get my first injection tomorrow. I have agreed to meet with my his research person as there is an ongoing study. Figure considering cost giving up a few hours of my time is least I can do!

Was also told on the quiet that nausea can't be tested for but is enough to abort use of either mtx or ciclosporin - hope this helps and good luck!

[mickyfinn007]

Thanks Fred for mentioning the other member, I have now received a PM from them, which was very enlightening, and I now know which course I have to take to push my way through this NHS financial barrier.
So wish me luck, it's time to put on the Superman suit ( was hoping not to do that, I hate wearing my pants over my trousers).

[mickyfinn007]

In the long run I think that dishing out meds for the long term that just don't work is a false economy.
So why not spend a few extra bucks, and have something that is far more beneficial to the patient....????
I can remember when NHS stood for National Health Service, not, NO HEALTH SERVICE !!

[Fred]

Thanks Fred for mentioning the other member, I have now received a PM from them, which was very enlightening, and I now know which course I have to take to push my way through this NHS financial barrier.
So wish me luck, it's time to put on the Superman suit ( was hoping not to do that, I hate wearing my pants over my trousers).

You're welcome I'm glad you spoke. Good Luck, just don't put your pants on your head like I've heard you did on your last cruise.

In the long run I think that dishing out meds for the long term that just don't work is a false economy.
So why not spend a few extra bucks, and have something that is far more beneficial to the patient....????
I can remember when NHS stood for National Health Service, not, NO HEALTH SERVICE !!

I have spoken to a few members in the UK about this problem, and it still seems to be a matter of where you live, how much you know about your rights, and how hard you are prepared to push.

[Amy]

Well, just had my first stelara injection, fingers and toes crossed! Updates to follow!

[mickyfinn007]

Nice one Amy and good luck with it.
When do you have your nexy one?

[Caroline]

Well, just had my first stelara injection, fingers and toes crossed! Updates to follow!

Good Luck Amy !
Hopefully you will reach the same score as Fred...

[Fred]

Well, just had my first stelara injection, fingers and toes crossed! Updates to follow!

Well done Amy I bet it was not as bad as you thought it would be.

Would you mind starting a new thread about your experience and progress in

[To see links please register here]

as it will be helpful to others and easier to find.

Sorry Micky for going Off Topic on your thread, I will accept one of these.

[Mateychuk]

I would certainly visit a dermatologist and request a prescription for Fumaderm. It took me from a 30 year sufferer to totally clear for the last 6 years on a maintenance of 1 x 120 mg per day. I am still living is a world of disbelief but also enjoying the absence of Psoriasis after so many years. Good luck in whatever you decide.

William Mateychuk