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.
A list of other tips that help when itchy:
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.
hi i have lichen sclerosus and live in ireland there is no support system here would love to chat
Hi Ladies, was just wondering if you still interested in chatting about Lichen Sclerosus?? I live in Ireland.
Hi. I from tyrone. I know were you are coming from. I have just been put on steriod tablets again to manage this outbreak. My consultant says I have a very agressive form of lichen planus and linchen sclerosis. Oral steriods are the only things that help my flare ups. Any number of creams do nothing for me. My consultant is on about starting me on a long term immuno suppressant drug that they use for transplant patients. It has its side effects so not sure how I feel about this.
hi edele, what drugs are they putting u on?? ive never taken steriods for LS, have they any side effects?
Hi Molly
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
hi edele, god thats an awful lot of side effects, i think the alternative natural route is better. have u had LS long, what age bracket are u in?
Hi Molly, i am 36 years of age. I went this morning for my health screening by homoepathic. Oh my god was fascinated by it. some of the stuff that showed up was amazing. she was able to tell me i had a vertabrau be out of place and that I bumped my head recently. Alot of my problems seem to coming from my gallbladder. she has advised for me to completly overhaul my diet. i am not allowed potaotes, sweet stuff, crisps, diary, wheat or peppers. Basically anything from the nighshade family. she has also recommened UDO's choice oil blend, wheatgrass, life gold liquad and super 8 pro-biotics. Also i have to cut down on drinking tea and to start taking half a squeezed lemon in hot water every morning. Also my iodine levels were very low so the UDO's oil should help this. I also had quite alot of pesticides in my system cause of the fruit and veg i eat so she suggested going organic...which is great but alot more expensive. She aso suggested swimming in the sea because of the healing properties of seaweed and I love swimming in the sea anyway which I will be doing from next week when i go to my caravan in donegal for the summer. Seaweed baths are also supposed to be very good.
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.
that sounds great, i hope it helps, i went to kinesoligiest which said basically same thing, ive had alot of surgery, is there a facility to private message here?
Hi Molly. I dont know if there is a way to private message. i can give you my email if you want
hi edele just click on the envelope symbol under coloured box thing, think u ave to ave it set up in you settings to recieved private messages, ive just sent u one, will b in touch , have to run now
Hi Molly/Edele,
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
Hi,
LS sufferer from Australia. We have quite a few LS experts here, there are also many other online LS forums. I use Diprosone OV Ointment and Vagifem which keeps the condition under control. Many other women use Clob and other compounded medicines. First line approach by medical world is with steriods. Failure to get this disease under control can result in spreading of the disease and high risk for squamous cell carcinoma cancers. If you can't get enough help in your own country, try other online support - Lichen Sclerosus Yahoo is a great site, there are many. Also find a specialist who is familiar with LS, DO NOT rely on Gynaecologists, this is a SKIN DISEASE. Vulva and Vulvodynia Clinics do specialise in this disease, good luck.
Just click on the envelope below the persons sign to pm
Hi quest. I am from Uk with lichen sclerosis. I was diagnosed two & half years ago. I have various treatments eg. steroid creams, a type of clear tape, antiseptic cream and now I am on six injections every 3 months.
take care
shazmill
Hi Shazmill,
These treatments sound really interesting and unfamiliar. Happy you're here. Why not start a new discussion on this? I think you must have clicked on one of the old dormant discussions the site flashes across the top of the page. Below it is our 'pinned' intro info for newbies and then current discussions are below that starting with the most recently active. There are lots of us here any time someone posts.
What is the clear tape. I have never heard of that one.
hi there. I will find out the name for it
Hi Shazmill, what is it used for? I am imagining all sorts x