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Psoriasis Club › HealthHealth Boards › Introductions v
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Hi there from Marcus

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Hi there from Marcus
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#21
Fri-04-01-2019, 11:49 AM
(Fri-04-01-2019, 10:23 AM)MarcusScone Wrote:
(Thu-03-01-2019, 23:05 PM)jiml Wrote:
(Thu-03-01-2019, 22:06 PM)MarcusScone Wrote: Hi all,

Thanks for the warm welcome and advice - as for the private prescription, it’s because the GP was very resistant to referring me to an NHS dermatologist - this was despite having a moderate body covering and a near 100% scalp covering - so I took it through the private route due to some insurance I have from work. The problem here is that it does not cover prescriptions at all.

My dermatologist has told me that going through the nhs is an option, although it would be unlikely that I would be assigned to him due to the size of the practice at the hospital he works at (quite a lot of dermatologists). He also mentioned that before Skilarence would be prescribed that I would need to go through light therapy (which hasn’t worked very effectively in the past, and I also couldn’t be now commit to with my job which requires regular travel), followed by methotrexate and cyclosporine, Botha of which I wasn’t keen to avoid which was why i tried acitretin.

Marcus
That's a shame that they will make you go through all the hoops to get an effective drug
. But I don't know another way to get effective treatment ...I would refuse uv treatment and explain that it doesn't work and you fear skin cancer ....go on Methotrexate  and after a week or two tell them you are constantly nauseous although it might be working by then ... and tell them you are worried about the side effects of other drugs but would happily go on skilarence which is cheaper than biological drugs  

Do remember if you are able to get psorinovo without a prescription you may be breaking the law importing it and if you take it and there are complications the NHS might not be happy treating you

From research that I’ve done from government websites it seems that importing medication for personal use up to 3 months supply is perfectly legal in the UK, so that at the very least is a worry off my mind.

I can understand the concern on the second, but surely if the NHS is happy treating hard drug abuse, they’re not going to turn somebody away for having used a differently branded version of a similar medication?

Great bit of research and it could well work for  you ...as you say it's one thing less to worry about ...you have a good point that they treat hard drug users with NHS money so  could be alright getting regular blood tests
But I certainly wouldn't want to be on DMF drug whatever it's called,without making sure I could get regular monitoring of my bloods

I still believe the best way to go is as most have suggested and go the NHS route but put up a reasoned arguments as to why you should go in skilarence
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#22
Fri-04-01-2019, 12:33 PM
Hi Marcus,

I see you are being very well looked after by this great bunch of people. I can understand your frustration of having to follow a standard procedure of care if you go through the NHS. It is similar in Australia, except your PASI has to be 50% higher than in the UK before you get the tick for biologic drugs. Jim's advice sounds very good, and it is nice that Caroline has offered you help in sourcing psorinovo. No one wants to take these drugs, but they are listed medicines because they work as intended for most: For some they work very well, including methotrexate. If a treatment fails you, then it is on to the next drug. With self-medicating as I do, if my treatment fails I will have to start from square one through the system here. If you are determined not to use the NHS, then at least try the pharmaceutical form of dimethyl fumarate to make sure it will work for you before considering alternative sources: There is a German biochemist who may be able to help you source a pharmaceutical grade chemical.

Good luck and welcome to the forum.
MarcusScone Offline Author
Novice


Posts: 7
Threads: 2
Joined: Jan 2019
Gender: Male
Location: London
Treatment: Protopic and Dovobet
#23
Sat-05-01-2019, 13:01 PM
I just wanted to say how grateful I am for the support you guys have all given me over the past few days, it’s genuinely been so pleasant. I guess it’s true that it takes a psoriasis sufferer to care about psoriasis!
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,201
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#24
Sat-05-01-2019, 13:12 PM
(Sat-05-01-2019, 13:01 PM)MarcusScone Wrote: I just wanted to say how grateful I am for the support you guys have all given me over the past few days, it’s genuinely been so pleasant. I guess it’s true that it takes a psoriasis sufferer to care about psoriasis!

You are welcome Marcus. We are all just people living with psoriasis and that is what makes this site unique, we are not money driven and have no motive apart from wanting to share and support.

Oh and maybe post some sensible stuff in [Group Specific]  Big Grin

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