Topic Options
#18757 - 04/19/08 08:12 PM Suffering at the hands of the NHS
peter mackean Offline
Member

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
hi everyone, what an amazing site.

i have only been on the net at home for a year, and its only just accured to me to look for further advice on IV.

i am 42 and lived with IV all my life in the UK, what a drag its been, i've always been embarrassed by my condition but have mostly been able to hide it under clothing and treat my face with baby lotion etc.

i got to a point in my life where i needed to do something about it, so i visited my GP who referred me to St Thomas's in London, this was about fifteen years ago.

some new medication was available, Acitretin - Neotigerson, a vitamin A supplement which i began to take with no immediate effects but i stuck with it and after a few months there began a difference. my skin began to improve but only over the summer months, once winter closed in it all came back, time to cover up.

ok, to the present day,
recently i have had to give up work (last November) through illness, that being generalized aches and pains to joints, i was going to bed tired and waking tired, i began to wonder if i got MS or something.
i've seen both my GP and my dermatologist to find out why, and its been a bumpy road.

now i do know that the acitretin does make your joints ache and is the most likely probable cause to my illness, but do i stop taking it and live with dry skin. in the meantime i have had blood tests, xrays, thyroid checked, all appear to be fine. but i do have osteoporosis which i understand does not cause the pain.

this last winter, my skin has been bad, and i've not been able to clear it using the acitetin, i think it is not working.

so here i am reading the fine words or lots of people suffering with IV. just last week i found a mention of an American lady who claimed she found a cure in 2006, and read all the following posts, i was amazed at what i saw, people who had cleared up the troublesome IV.

they spoke of Apha Hydroxy lotion with 10% Urea, an extra strength lotion by Dermal Therapy of Canada, wow i thought, i got to try it, it sounds very convincing, i got in touch with Dermal Therapy and found it was available in the UK with Advanced Care Products in Ipswich for around 20.

It arrived last Friday and i've used it five times after showering, didn't dry off, just applied sparingly over your wet skin, it dries in about 10 mins tops with no residue, and what a difference, eight days later my skin is totally scale free and smooth, so smooth i love it.

So the questions are, is there anybody else suffering at the hands of the NHS?, does the NHS know what they are doing?, why haven't they heard of this wonderful lotion that works and use it?.

I have for years used disgusting oils and greases, mostly parifin and petroleum based, Oilatum and Calmurid, but needed to wash off prior to bed or getting dressed. when i was a kid i was told i might grow out of it.

to the NHS, i give you credit where its due, saving many lives after accidents but times have changed and moved on, and you do use the internet, so why have i missed out on this treatment or been made aware of it, just what the bloody hell are they doing, for this i have lost my faith in them.

If anyone wants to chat direct with me in the UK, petemackean@sky.com

all the very best finding treatment people
_________________________
pete mackean

Top
#18758 - 04/20/08 12:24 AM Re: Suffering at the hands of the NHS
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Peter
Welcome to our site and I am thrilled Dermal Therapy`s Alpha Hydroxy cream has helped you and it is available in the U.K. I am perplexed with the doctors at the National Healthcare System didn`t begin you on the alpha hydroxy creams for your IV before they began using Neotigason.I am sorry you have suffered with joint pain and all that goes with the side affects, and wished you had come to our site before. People here will give you the straight up truthful answers dealing with their ichthyosis, what works best for them, and their positives and negatives on how best to treat their skin. Also Peter, why dont you get in touch with the Ichthyosis Support Group in Reading, England. They get together once every two years and you can possibly attend one of their conferences. Take care Peter and hope to see more of your posts.
Sincerely,
Les
_________________________
Les Avakian

Top
#18759 - 04/20/08 10:14 AM Re: Suffering at the hands of the NHS
peter mackean Offline
Member

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
hi Les,
thanks for reply Les, I'am finding this site so incredible, i have tears in my eyes even as i type this, i am amazed at what i read from so many people when there is a product there that by the sounds of it can help so many.

Our national health service is unfortunately slow for coming forward with the important information, ie. info on this web site which i have to say has changed my life and has increased my self confidence by 20-30-50 no 100% easily, so much so i'd run naked through the town, ok maybe not that far. this site only came to my notice from a programm on the BBC tv which after mentioned IV helpline. I had already looked up IV but hadn't thought there would be a helpline. I think all of you out there can understand my frustration.

but it is staggering and makes me spit that our NHS doesn't hand out a simple leaflet on updates to whats going on out there in the outside world. Pressure needs to be put on them and i'm all up for a fight, and i'm sure it would fall on def ears, as there all hide away like cockroaches. I'm going to start with my GP and get him on my side. My obvious thoughts are the NHS's restraints on what is and isn't used because of the pharmaceuticals, and probably money.

i also have the world famous body shop main office right on my door step, i might look at getting them on side too, i have so many questions that need answering
_________________________
pete mackean

Top
#23474 - 12/16/08 12:53 PM Re: Suffering at the hands of the NHS [Re: peter mackean]
peter mackean Offline
Member

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
update
december 2008

my usual derm is away on maternity leave, bless, so yesterday i had a derm appointment with Dr Alli, nice chap, last saw him in 2003 i think, and he was very excited to see my skin condition cleared up after using Alpha hydroxy lotion. My usual derm Dr Hextel was arranging a meeting with the pharmacy to supply and it looks like she left it too late before she had baby, so now dr alli is on the case. excellent news

now then, i recently saw my rheumatologist to see whats happening with my aches and pains, it seems that there is a problem with my joints, it is possible i have either hypermobility, a softening of joints or it may be Fibro Myalgia which is more generalised and has many symptoms. we don't know yet if there is a connection with the neotigason which i was on for more than 15 years.
_________________________
pete mackean

Top
#28555 - 07/25/12 01:46 PM Re: Suffering at the hands of the NHS [Re: peter mackean]
peter mackean Offline
Member

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
an update, all be it a late one after 4 years
much water has passed under the bridge and my knowledge of IV treatment and my own personal results are great

so it appears the treatment (Acitretin) i received over many years had taken its toll on me, with aching joints, back pains etc, my current status is that i was diagnosed with Fibromyalgia in 2008 which in its self is pretty complex and may have begun shortly after i had my appendix removed aged 21, you can see more expanation of FMS at www.fmswaws.org

in the meantime i have been managing my skin condition myself, i made the change after i realised that the Acitretin was not working and my aches were increasing

i found a thread here on Ichthyosis.com mentioning a new lotion, it took a while to research it, finding its name etc only to find it was made in Canada, and could i get it in the UK ?

well i contacted the company Dermal Therapy and the MD himself wrote back with great news YES it was sold by Advanced Care Products of Ipswitch for just 16.50

immediately i purchased my first bottle, with the knowledge that this lotion was specially formulated to exfoliate and protect the new skin beneath, it was made for my skin type and had great reviews, and i too cannot praise Dermal Therapy enough

for those of you that know Les Avakian, shout out to Les! who was interested in my story helped me out a lot, and a number of people have spoken to me over the years regarding the treatment

personnally i used the lotion neat at first after a shower, didnt dry off completely and still dont, just dab and use the moisture of the skin to spread the lotion further, its non toxic, non smelly and dries in minutes, and best of all, IT WORKS, i now use it slightly diluted just so it goes a bit further

in just five days my skin was clearer than the past 30 years, no meds or nasty sticky petrolium based creams and lotions could do this, its changed my life completely and even boosted my confidence

now i can't blame the NHS because even though they show some compasion their hands are tired by red tape, but i did try ISG in Reading who to my shock were not supportive, it was even suggested to me that i was a sales man, which i am not

what annoys me is that there are people suffering, YOU! more hurtful is seeing young people with IV and i know what they will go through during their lives, being given a cold shoulder to me means that ISG think its more important to raise money and keep more members than it is to help them manage their condition

i never got an oppology, so i gave up with them, i'm always glad to speek to people to tell my story, and so many share my feelings and have similar experiences, im not attacking ISG staff, but i would like them to become more proactive as are Ichthyosis.com

in fact not long after i told Les my story it was put in the F.I.R.S.T newsletter and some of the UK readers were in contact with me, i hope they are still manging their skin well, i got more response from the other side of the world than i did here in the UK, what can be said? perhaps WAKE UP

if ISG still want to get in touch you are welcome, but you need to get active, you need to help change things for sufferers, take notice and kick the NHS

wish everyone the best
_________________________
pete mackean

Top
#28567 - 07/30/12 01:10 AM Re: Suffering at the hands of the NHS [Re: peter mackean]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I always love hearing an update from someone! Thanks for the info and thanks for caring about others who suffer!

Top
#30829 - 09/28/20 02:55 PM Re: Suffering at the hands of the NHS [Re: peter mackean]
peter mackean Offline
Member

Registered: 04/19/08
Posts: 24
Loc: Littlehampton, W Sussex, UK
TIME FOR ANOTHER UPDATE

wondered if you might be interested in my story?

i'm 55ish now and had Ichthyosis all my life, and gone through all the usual struggles of adolescence and adulthood, mostly of the obvious unsightly skin but i have been fortunate that my face was clear

my skin type shares the usual scaly look, and in places it used to be very thick and brownish which over the years i thought i would never be rid of on my arms, legs and stomach - and in my time i have tried many things, late night skinny dip and roll round in the sand as a youngster, even found a stagnant pool of sea water very high in salt which worked a treat but was gone after that year, as with most things unable to do alone, in daylight and mostly our climate naturally won't permit

NHS treatments are not the best in the world, i found mostly greasy and uncomfortable, and the one thing i found most concerning is they are usually a paraffin based product which is used to dry the creams rapidly as used in cosmedics, and also are an irritant to our skin types

in my 20s i sort professional advice and was prescribed acitretin which for a short time did help, mostly in summer months, but after many years usage can be frowned upon by GPs in the know which can lead to problems which joints and painful conditions

back in 2008 (aged 43) i had had enough, i stopped taking acitretin after learning that most patients shouldn't be taking it more than 5 years, i'd been taking it over twenty years, at that time my arms were so bad my sleeves would empty across my desk like i had a bad dose of dandruff

but i went online, chatting to folk in the US and Canada who are way more pro active in getting things positive done, i chatted with a wonderful lady who said she had discovered a cream that actually worked and her skin was clear, but it took me a while to locate its brand name, it was a alpha hydroxy lotion, and eventually i found made by Dermal Therapy in Canada, instant frown on my face, whats this going to take to get hold of some

well if ever you email folk in the states and canada, you can be sure of a prompt reply, and sure enough i received one informing me that a company in Ipswich sell their product, and yes it is a tad expensive but actually cheaper than most UK products of the same quantity

the loophole it seems as to why the NHS won't promote it is simple, for it to be used here in the UK it has to pass strict testing and guidelines, since it wasn't going to go through as a prescription medication or treatment, it was marked down as a cosmetic used as an exfoliate and moisturizer, in fact it is useful to those suffering skin complaints with diabetes

i had to try it myself, and i finally got some at 17 a bottle through Advanced Care Products, i began using after a shower, the first application felt great, no itching etc and i think i was easily carried away by having five showers a day for a week, and by day five i was pretty much clear, my skin amazingly smooth after 43 years, and i have been using the product ever since

and please be under no illusion that i get anything for promoting alpha hydroxy lotion, because i DON'T, i am not in contact with either company, i order on line the same as anyone, the only thing i do different is i find the lotion a little thick, so when i purchase two bottles i divide equally into three bottles (474ml) and top up with water just so it spreads further and easier, three bottles last me on average upto four months, it also dries pretty quick without the ickyness on clothing and bed sheets

but my story doesn't end there, because even now at 55 i still find new ways to combat my skin condition, i decided on a fine bright warm summers day this year (one of five i think) that i would spend the whole day on the beach, i stripped down to my underwear and got comfortable reading a good book, i had a little sun cream on my head and face as normal, i have to be careful on top of head as i am balding and skin is very thin, i had had the usual shower and hydroxy lotion that morning so felt ok

yes i did fall asleep, but the warmth was so inviting, i felt great and i would turn over many times and change position, i guess i spent a good 5-6 hours roasting, and i began to feel the effects, i need to get home and hydrate as i had drunk all i had on me, walked the half mile home and had a shower and plenty to drink

yes i was frazzled, nicely pink all over, and felt the effects over the next couple of days or so, quite uncomfortable, and sure as eggs are eggs, i began to peel a little at first and a lot later on, fortunately living alone benefits me hiding away for a few days, and what with the pandemic had its uses

so after five days most of the peeling had passed, and i continued as usual to use the hydroxy lotion, but not as heavily because again after all these many years my skin is even smoother, but as the year draws closer to winter i can already see my tanned arms beginning to dry but nothing like it used to, its now manageable

now for certain i would never say, get out there and burn yourself, because that's pretty stupid and dangerous, and comes with all the normal medical advice, but providing conditions are ok, that you stay hydrated and be aware that you might have a few rough days and i think certainly for younger members in late teens and twenties who are fit enough to take it, should be aware that there are ways to rid the skin type

of course my story comes with a warning to be careful as most of us know too well, but as a child, and most parents will always be told, get in the sun, get on the beach, if ever there is a sunny enough day

another thing i learnt about my skin, is that the dry scaly skin was always there as a protection, for those with normal skin type, your skin naturally protects against harmful environment, contaminants etc and because our skin type may be missing filigrin in order to shed etc, the dryness also protects our delicate skin from the environment too, so again once our skin type is rid on the dryness it must be kept hydrated, with the lotion and out the sun, wear shorts and Ts as i do and you'll be fine

just another side note: i know it does sound drastic perhaps, but the measure is as much the same with any treatment or even medication, there are side effects and it may not work at all for some, either needing less or more, my body is damaged after years of taking acitretin (not from being in the sun) and and i understand acitretin is either banned in the US or used way less, as a result i now suffer with another condition of Fibromyalgia, constant aches and pains

so please if you can, share my story, i'm sure you will simply discard it in the bin, but your job is to share and enlighten your followers and give them some hope, i will share my story to the main Ich site with hope that others will find it

much love to all with Ich
pete
_________________________
pete mackean

Top


Copyright 2012 Ichthyosis Information