How difficult is it to get Bio treatment?

[krug22]

I am writing again on behalf of my husband who is 77. He was taken off the Ciclosporin and the Fumaderm because although it helped his psoriasis very much, it apparently caused liver kidney problems. He had been tried on various creams for a period of two years and also Acitretin before these more potent drugs were offered.
His kidney function went down to 9% and he was in hospital for a week - he is now out and his kidney function is slowly rising. Not sure of cause of drop from 50-9% over two weeks - could be painkillers, antibiotics psoriasis drugs.

To cut a long story short he is on the very lowest dose of ACitretin of 25g a day. Last year the dermatologist said that if the Fumaderm did not work he would have to go for the Bio injections. Well he has been for initial assessment and the man said his condition was not bad enough for it to be considered. His skin is peeling off in sheets of his feet, risk of infection a nightmare especially as antibiotics could cause kidney problems and neither of us have any quality of life as he is struggling to walk.

I know Bio's are a last resort and I know they cost the NHS a lot of money. I did contact Eric's dermatologist by phone just to make sure I understood correctly that he had wanted to progress the Bio option, and he said he did given the circumstances and the fact we had tried the other options. He did say he would write urgently to the Head of the Bio Unit and put our case forward. This was  2 weeks ago. The Nephrologist has said she will contact the Dermo so we can try and get some kind of treatment plan as I understand that Bio's can take a while to kick in.

I just wonder if anyone had to fight to this degree? I do know Eric is difficult with his co-morbidities and also his Lupus but  we are literally looking at having to buy a wheelchair soon or he will be totally housebound. 

Any comments gratefully received.  WE cannot afford to go privately with the Bio injections and forgive me, we have both been high rate tax payers for most of our lives. Is this just NHS lack of communication between Departments?             Helena

[jiml]

Hello Helena sorry to hear Eric is still suffering with his psoriasis so badly it is affecting his mobility. If your dermatologist says he needs to go on biologic drugs,  if they will give him some quality of life back, then the department that are denying you are not offering good care.  Whoever assessed Eric needs to be told of the pain and lack of mobility the disease is causing .... Some of these assessors are like insurance assessors looking for ways to save money, and cut costs..... But they should not do that at the expense of Eric's health and wellbeing

I have never encountered this type of problem. And neither should you

I would shout very loudly and make waves, ask for a written copy of the reason the biological drug has been refused .......Unfotunately I don't think you are alone fighting the system others on here have been messed about terribly trying to get biological drugs, Grizzly Bear (Andy) waited ages for his  ...... But shout and shout loud, it seems if you make a nuisance of yourself you will get the treatment you deserve

Good luck
Jim

[krug22]

Thanks - good advice. Only problem frankly is that Eric is 77 and how much longer do we have? He is getting depressed, is very aneamic and we still do not know what really caused the AKI (Acute Kidney Injury). The Nephro thought it may not be the Fumaderm and wanted to do some research with a view to discussing with the Dermo and putting Eric on it again. Obviously we would try to wean him down to the very lowest dose possible to control the symptons. However, from my phone call to the Dermo, he seemed to want to go ahead with the Bio. Nightmare dealing with different consultants frankly especially as they do not seem to talk to one another! Rant over!

[jiml]

Thanks - good advice. Only problem frankly is that Eric is 77 and how much longer do we have? He is getting depressed, is very aneamic and we still do not know what really caused the AKI (Acute Kidney Injury). The Nephro thought it may not be the Fumaderm and wanted to do some research with a view to discussing with the Dermo and putting Eric on it again. Obviously we would try to wean him down to the very lowest dose possible to control the symptons. However, from my phone call to the Dermo, he seemed to want to go ahead with the Bio. Nightmare dealing with different consultants frankly especially as they do not seem to talk to one another! Rant over!

Rant away, we all have rants here, it's good to get it out of your system  
However it doesn't matter how old Eric is ..... He needs treatment so should get it ...... Hells bells they replace people's hips at older age than Eric is ... They did my mothers at 82 so cost shouldn't come into it

Push them for a biological drug it may work very fast for him at low risk ..... We non of us know how long we have  left Eric with good treatment could easily go for another 10 + years so needs treating so his twilight years can be meaninful

[Fred]

I may be missing something, but if his dermatologist says Bio's then why hasn't he/she prescribed it? The bio treatments for psoriasis are prescribed by a dermatologist so I don't understand why someone else is saying no.

To me there is no reason why his dermatologist can't just write the prescription. No one does an assessment apart from the dermatologist so I'm confused.

[Bill]

In any system you have to be a squeaky wheel if you dont wish to get ignored.

Best of luck.

Bill

[krug22]

Well the Dermo said that the BIo had to be carried out at the Infirmary rather than the local hospital we go and see him at. He did some paperwork last year and organised TB blood testing in case Fumaderm did not work. We then got an appointment to go to the infirmary for an assessment for the Bio - I did not go with ERic but the man asked Eric if he knew what he there for and Eric said no and he said it was a Bio assessment. He spent an hour going through forms and then said he did not think Eric's psoriasis was bad enough - he also said that his lupus had gone. Now even I know Lupus does not 'go' it may well be 'dormant' but it does not go!
I was very upset when he came home as his legs had just started to peel - the man( Eric did not get name) never looked at his legs and the Nephro had taken him off the Acitretin due to the kidney thing so he was no treatment.
I rang the Dermo we had been seeing and he said he wanted Eric to have the Bio's and would write to a colleague, the Head Person who was in charge of implementing this. He promised a copy to me and to the GP too.
So I think this is just an NHS admin thing - made more complicated by the kidney problem. I frankly would prefer Eric to go back on a low dose of Fumaderm but obviously it is not my decision. He also has to have a colonoscopy and injections for the aneamia so little worried how he will cope with yet more injections but we shall see......
I think my best bet is to try and chase our Dermo again - can usually only get him 2 Tuesdays a month when he is at our local hospital as he lives in Cambridge and does a lot of private works and travels all over the UK with clinics or so it would appear.
Hope this clarifies - doesn't sound very clear does it? Just think we are caught up between Departments and maybe even NHS politics but that is just me being cynical. Sadly may have to resort to a (gentle) hissy fit if I do not hear back soon.

[jiml]

if you have a hissy fit,dont be gentle give the man who did the assessment both barrells and ask why he didnt think it appropriate to examine Eric,as obviously Eric gets confused....

it may be a mix up but its badly affecting your lives

[Fred]

Have a look at this thread: NICE Quality Standards for Psoriasis

Like Jim and Bill said. You are going to have to get angry with them, so read through that thread and print stuff off or Email them a link to it.

Your husband can't possibly get the correct treatment for psoriasis from two different departments that don't talk to each other.

[Turnedlight]

Ooh I feel your frustration - I've seen a dermatologist who didn't want to actually look at my skin, I ended up pulling my top off which upset her for some reason..

If you are put forward for biological treatment, it seems to take a little while to come through, I don't know whether fast tracking ever happens.. I hope you get sorted out quickly it must be very worrying.