An Interesting update to my IV story

Posted by: peter mackean

An Interesting update to my IV story - 09/28/20 03:29 PM

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 issues 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 that was gone after that year, as with most things unable to do alone, in daylight and mostly our UK 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 on application as used in cosmetics, and also are an irritant to our skin types

in my 20s i sort professional advice and was prescribed Acitretin or Neotigerson which for a short time did help, mostly in summer months, but after many years usage can be frowned upon by practitioners 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/Neotigerson after learning that most patients shouldn't be taking it for more than 5 years, i'd been taking it for around 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, the usual embarrassment

but i went online, chatting to folk in the US and Canada on this very site, 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 cleared of IV, 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 an email 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 associated with diabetes

i had to try it myself, and i finally got some at 16.50 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 very very happy with it

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 up to 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, improving all the time, (even if it has taken me 55 years) i decided on a fine bright warm summers day this year (one of five i think we had) 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 like a beached whale, 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, having reasonable skin with constant use of alpha hydroxy lotion has given the advantage that i don't just burn in a couple of places, i can now tan near all over, i did feel 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 advantages

so after five days most of the peeling had passed, i was more comfortable 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 forearms 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 health warnings, 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 IV skin type

of course my story comes with a warning to be careful as most of us know too well, Keeping out the Sun!, but as a child, and most parents will always be told, get in the sun, get on the beach, get some Vitamin D, if ever there is a sunny enough day, never in the UK haha

another thing i learnt about my skin, is that the dry scaly skin was always there as a protection, i mentioned the top of my head, for those with normal skin type, your skin naturally protects against harmful environment, contaminants etc and because our IV 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 hydroxy lotion, sun cream 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/Neotigerson (not from being in the sun) and i understand Acitretin/Neotigerson 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 my advice for those with IV, spend a day in the sun, a week of peeling and some medium discomfort or 20 years on medication and a lifetime of joint pain etc

much love to all with Ich and please be responsible and safe
pete