Need abit of advice on LS. Mears.
Posted , 6 users are following.
Hi , Since being on here before talking of my condition LS. I have now been put Amitriptyline by my Doctor. I was diagnosed a little over a year ago, by my practitioner nurse as none of the doctors at the time spotted it. The hrt cream 2-3 times a week, and steriod cream twice a week weren't working very well, I seemed to have more flares ups than not. My doctor thought Amitriptyline may help with a few of the symptoms I was suffering. ( a burning feeling there most of the time, afew aches in afew different places, and having to pee rather alot more than normal.) Is there anybody that can assure me that amitriptyline has worked for them, got 56 tablets taking 1-2 per night. I have read that you shouldn't come straight off of them when finished, so may have to get some more to wean off slowly. not sure , but that burning feeling has gone for about 5 days now, so hoping that's a sign of improvement. although, I have been feeling off past 2-3 days , not sure if anything to do with tablets as I have history of feeling bit sick soon mornings only no as bad as this. Any advice I'd be grateful for.
0 likes, 9 replies
Applebys2006 Mears
Posted
i really understand your frustration i have amytriptalene its meant to help pain relief i had already been on low dose for twenty years i was suffering miserably with lichen sclerosis i went private in the end to dermatologist who gave a private prescription for cream not given on nhs but had my gp prescribe it it took a few weeks but things are so much better just sore here and there. the name if it is in full is clobetasol propionate/neomycin sulphate/nystatin 0.5mg/100,000 iu/g ointment to apply twice daily to vaginal area and anal area. ask your dr about that antiseptic in it.
Mears Applebys2006
Posted
hi, the cream I am on is Dermovate, which is a steriod cream. trouble was when I got flare ups (really often) , I had to up it from twice a week to everyday,sometimes 2 times aday for 10-14 days. I am also on a hrt cream "Ovestin 2 times and 3 times every other week..I was told to take 1-2 Amitriptyline tablets every night, so far kept it at 1 a night, only been 8 nights so far.
Applebys2006 Mears
Posted
this cream is not the same as dermovate only but normally very expensive and not prescribed on nhs it has given me my life back but it just shows you if your prepared to get private input things happen and i dont think its right my dr said not normally prescribed for nhs patients i rest my case i really relate to you it affected my mental health terribly
Guest Applebys2006
Posted
It is no better here in the states, I can assure you. Half the docs I have seen don't even know anything about this. I have seen 8 and have different instructions from each with nothing really working. Just hoping it doesn't turn into cancer. Neither the strong steroid, the hormone cream, or the various oils have really made any measurable difference. Yes, it affects your mental health quite a bit. I have lost friends and am just barely hanging onto my job. I have researched for a cause and thus far only found thyroid antibodies, Lyme (borrelia), possibly hpv, and of course lots of inflammation and estrogen deficiency. But, as young girls get this, the sole cause can't be estrogen deficiency. From other publications, I surmise chemicals in our food and water have overwhelmed our immune system.
Applebys2006 Guest
Posted
i am sorry for you here they at least understand and i see a gynaecologist regularly to check it does not go to cancer. i went online and some foods will agravate the condition ive changed my diet completely there is a list online high oxalates agravate the condition any form of potatoes no chocolate only white chocolate have a look online regarding diet although one gynaecologist said they did not specify a diet . it was a dermatologist who helped me although i paid private in the end i do hope you can get satisfaction with someone its dreadful for you. Amitriptalene is more used today to help nerve pain. I am surprised you cant get some satisfaction. Let me know how you go on its miserable for you regards jenny united kingdom
Guest Applebys2006
Posted
Hi,
Yes, I stayed off of high oxalate foods for several months but it had no effect. Been trying to stay off of wheat but it is difficult. Have not been able to find a dermatologist who will see me and who knows anything about it. The biopsy did not show cancer. I have neurontin (Like amitriptyline but it makes me foggy headed and I can't drive or work. I am still working about 50-60 hours a week. Thanks for your well-wishes. How are you doing? biscuit
beverly52803 Mears
Posted
You don't say when you began taking the medication, but your body may need time to adjust. I have never taken it, but am pretty sure there are older posts that mention it. Don't know how you would find them as I'm not that good at navigating this site despite being on it for several years.
If you have relief from the burning it might be worth hanging in to see if the possible side effects go away. The first time I was put on flagyl I actually called my gyn at the time because the side effects were so bad I was afraid I was being poisoned by it. He told me to hang in and I did because I had such trust in him. He was right. Maybe you could call your dr's office to hear what he/she has to say including the weaning off aspect. Unfortunately many docs just don't take the time to discuss this sort of thing. Good luck.
brenda23819 Mears
Posted
my ls has moved from down below to my skin on my stomach back back of legs arms and it really does itch . i see the dermatologist once a month for it . So if you get those white itchy spots on skin go to the doctor . I sure hope you feel better .
lynne1945 Mears
Posted
hi Mears
I'm sorry for your pain and frustration. I can certainly relate.
I find Amitriptyline to be helpful. I take 30 to 40 mgs every day. I was reluctant at first, mainly because I am already on an antidepressant, but evidently these days its mainly used for neuropathic pain.
I wonder how old you are and wonder also why you are using oestrogen cream 3 times a week. I am in my 70s and also need oestrogen now and then, but only about once every 4 to 6 weekly. The hrt cream causes a lot of problem with pain and swelling with me and I avoid it as long as possible. Every 2 or 3 days seems excessive, but I'm not a Dr.
As for the Amitrip once you are finding if its helping with your pain you wont be wanting to wean yourself off them. If it helps, why would you want to. It does take a few weeks to get used to them but other than a dryish mouth I have no obvious side effects. Good luck with it all.