Lichen Sclerosus
Posted , 30 users are following.
Would like to link up with anyone in Ireland who has or thinks they have the symptoms of lichen sclerosus. It is proving next to impossible to find a treatment for lichen sclerosis in Ireland although judging from the postings on this forum many people have been diagnosed with this condition in UK and US.
4 likes, 46 replies
Guest
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Add a little 'Doublebase Emollient Bath Additive' to a half cup of luke warm water, sit on toilet and pour on yourself.
Wear loose trousers, or skirt preferably.
Wear cotton pants.
Do not use coloured toilet roll.
mommy-of-5
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carol501 mommy-of-5
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molly2012
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catts123 molly2012
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edele97960 Guest
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molly2012 edele97960
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edele97960 molly2012
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Firstly the steriods have their side effects which is weight. the cravings for chocolate biscuits which i never eat as i dont normally like them is worst than the cravings you get when pregnant. i have put on a stone in weight since being on them. they are the only thing that helped me.
the drug they are on about putting me on is Cyclosporine. Cyclosporine is an immunosuppressive drug that was first used to help prevent rejection in organ transplant patients. Cyclosporine suppresses the immune system and slows down the growth of certain immune cells. according to the patient leaflet it provide rapid relief from symptoms. it says some improvement in symptoms after two weeks of treatment, particularly with stronger doses. However, it may take from three to four months to reach optimal control.
according to one website risks with cyclosporine include kidney damage. This increases with length of time and amount of cyclosporine taken. Your doctor will monitor your kidney function before and during treatment. Patients can also develop hypertension on this medication so frequent blood pressure checks are important.Vaccinations may be less effective if taken while on cyclosporine.
What are the side effects?
Decreased kidney function
Headache
High blood pressure
High cholesterol
Excessive hair growth
Tingling or burning sensation in the arms or legs
Skin sensitivity
Increased growth of gum tissues
Flu-like symptoms
Upset stomach
Tiredness
Muscle, bone or joint pain
so as you can see this decision for me to possibly start these is not an easy one. i have been to a faith healer on Monday and I am applying the oil and holy water mixed that she give me and I think it may be helping. mentally it helped. i am going to get a health screening tomorrow by a naturalist to identify what in my body is damaged and needs fixing or if there is foods etc i need to eliminate from from my diet. from reading the forums on Lichen Planus which i have in my mouth and skin diet seems to be a big thing. I will let you know how i get on. xxxx
catts123 edele97960
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molly2012 Guest
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edele97960 molly2012
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Basically it is what i thought all along, LS is our bodies way of saying something in our lifestyle needs to change so I am going to try cleansing my system and cutting out basically everything I can and following what she says. Its worth a try.
molly2012 Guest
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edele97960 molly2012
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Chrisy molly2012
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molly2012 Guest
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Emis_Moderator molly2012
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See https://patient.info/forums/discuss/private-messages-226361
Also, there is a discussion here that may be of interest https://patient.info/forums/discuss/-ls-lichen-sclerosus-stop-using-western-medicine-almost-cured--257533
Regards,
Alan
Emis Moderator
suedm Emis_Moderator
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joanna96215 suedm
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I posted information about what has worked for me, on a support/advice forum, in hope of actually providing support/advice!
Morrell1951 joanna96215
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joanna96215 Morrell1951
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It doesn't have an oily feel to it at all as the honey binds it all together so it has a thick honey consistency to it, making it easy to apply but it does melt with body heat.
There is also a cream which is called 'blend' which is calmer but appears to take longer to start working.
Morrell1951 joanna96215
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Chrisy Morrell1951
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Morrell1951 Chrisy
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