Have you tried E45 cream?

[todlhunter]

Hi everyone

Newbie here, I have decided to look for a clinical trial that I can go on that me a be miracle cure for my chronic plaque psoriasis, whilst I was trawling my way around the t'internet I fell upon this group, helloooo!

Brief history, I had a heart attack in Jan 2016, this was bought on Polycythemia caused by sleep apnea, now, it was either the shock to the body of the heart attack, or all of the meds that I have been taken since that have caused my condition, or just bad luck.  Now, it has got quite bad, particularly on my hands and legs and groin, I have tried every single steroid that is possible, no luck, I had light treatment at Watford General Hospital (Steve, the nurse there, is a Saint), it worked fantastically, for two months afterwards I felt great, unfortunately it only lasted two months.  Here I am four months after the treatment finished and my skin is wrecked again, psychologically I feel awful as well.

I found a thread on your forum regarding Otezla, now, this has not been offered to me yet, my GP's are not what they were, can any members here give me any feedback as to their experiences with this drug please?  I wouldn't say I am desperate, as I am sure there are other people out there much worse than me, but any help will be really appreciated at the moment.

Thanks in advance.

Yours aye!

Tod

[Fred]

Hello Tod   to Psoriasis Club.

Not sure why your title is about E45 as you didn't mention it in your post.  

First off there is No Miracle Cure. It's all about management.

Regarding Otezla if you put it in the Search you will find a few threads that may help. *You need to be logged in to use search.

You mention your GP. Are you not seeing a dermatologist? I ask because I don't think a GP could prescribe Otezla.

Regards.

Fred.

[jiml]

Hi Tod and welcome to the club.... you will find the group here always willing to help and offer advice, but you won’t be offered a miricle cure, because there isnt one .. despite claims you might read elsewhere on t’internet   here you are among fellow sufferers helping each other cope with the disease and offering advice. My advice is forget about clinical trials as that is all they are trials and you might get the drug that’s on offer or you might get a placebo.
There are plenty of good treatments available that should control your disease. I suggest that you read on here about the drugs that are available .... then get a referral to a dermatologist who can offer more than just steroid creams
There is a protocol that they go through before you get to biological drugs,
Read here Prescribed Treatments For Psoriasis for treatments that are available

And E45 won’t help, are you using it you didn’t say ?

[todlhunter]

Hi Jiml

The E45 mention was an attempt at light hearted humour, as I have been asked a hundred times if I have tried this, I have been to the consultant dermatologist at Watford Hospital, I have also been to two Consultant Dermatologists in Harley Street, one of them a Professor, so far, after forking out quite a few thousand pounds I am still no better, hence the search for alternative medicine, I can assure you that I have tried everything that the eminent Professor has offered me, at my last appointment last week (£360 for 30 mins, I was there 22 mins) he has resorted back to medication that he gave me 12 months ago, I reckon my current score on your clapometer is about 29, hence my search for alternative drugs.

Yours aye!

Tod

[jiml]

Hi Jiml

The E45 mention was an attempt at light hearted humour, as I have been asked a hundred times if I have tried this, I have been to the consultant dermatologist at Watford Hospital, I have also been to two Consultant Dermatologists in Harley Street, one of them a Professor, so far, after forking out quite a few thousand pounds I am still no better, hence the search for alternative medicine, I can assure you that I have tried everything that the eminent Professor has offered me, at my last appointment last week (£360 for 30 mins, I was there 22 mins) he has resorted back to medication that he gave me 12 months ago, I reckon my current score on your clapometer is about 29, hence my search for alternative drugs.

Yours aye!

Tod

You say you’ve tried everything
And you are throwing money away when there is effective treatment on the nhs... I would be interested to hear what treatment they have given you that is so ineffective and expensive
I am treated by the NHS with Fumaderm tablets and it costs me the cost of a yearly prepayment certificate and have been clear for 6 years on it

[todlhunter]

I've tried Fumaderm but it didn't work, but, thanks for telling me I am throwing money away ,my local NHS is appalling, my GP has limited funding, so apart from the light treatment on the NHS I am funding everything myself.  I am glad to hear that you are managing your condition with Fumaderm, I wish I was that fortunate.

[Caroline]

Hi Tod,

Welcome to the forum!  

A miraculous cure!!! That would be great, you would be the first one in the world, I think.
But worth searching for it. It must be there somewhere in the catacombs of our immune system.

For now indeed it is all about management. We all have different results on that.

Agree with Jim, what have you tried already. There is so much, I doubt that you have tried everything.    no offence of course, but I think we can come up with some extra alternatives.

Have fun on the forum, that is a cure that really helps.  

Btw, what was it that did not work with Fumaderm. ?


Caroline

[jiml]

I've tried Fumaderm but it didn't work, but, thanks for telling me I am throwing money away ,my local NHS is appalling, my GP has limited funding, so apart from the light treatment on the NHS I am funding everything myself.  I am glad to hear that you are managing your condition with Fumaderm, I wish I was that fortunate.

It might be appalling but it’s your best bet to sit and wait. If your private doctor is not helping either
You say you have only had the disease since 2016 so I’m interested to hear how long you have given each treatment to work and which ones you have tried .... if we know that we can offer advice about what to ask for
Your gp can only prescribe creams and generally things with limited success only a dermatologist can prescribe the more effective treatments ... no matter how bad the NHS is it’s still your best bet for lasting clearance for the lifelong condition you have
I used Fumaderm as an example there are many members here using different treatments for control successfully
Good luck

[D Foster]

Welcome to the forum Tod, why are you not going to see a dermatologist instead of a GP ( GPs know a little about a lot but when it comes to anything like P then they are not good at all ) and you certainly should not need to fund anything yourself apart from the yearly prescription fee.
Have you tried Stelara which is a biological drug and extremely effective for P , the first thing to do is to see a good NHS dermatologist and in the meantime if you want a good moisturiser that is not expensive get some virgin coconut oil . It sounds like that you have had a lot of different treatments so Stelara could be OK to go straight on to, it's worth asking.
Have a good look around Tod and bear in mind that any question you ask that are answered by the inmates is coming from a position of personal experience , Fred does not allow adverts or conmen selling "magic" cures .

Dave

[Turnedlight]

Hi Tod nice to meet you

I know the NHS can be variable but it does sound like your experience is quite different.. I have seen a private derm once when we had private healthcare, but he said I needed light treatment (which they couldn't offer) and referred me straight back to the NHS where I continued to see him. The only useful thing about the private consultation was being able to get a fast appointment.

All that I've tried since has been on NHS.. I know budgets are tight but you should be able to try all the treatments right up to biologicals so long as you try everything in order as per the NICE pathway.

As for E45 - does anyone actually use that stuff? It stings like crazy..

Good luck with your quest, I also would urge you to push harder for better NHS treatment, and please share how you get along!