Tacrolimus

Women's health
1

Just wondering if anybody has been prescribed tacrolimus for their LS. I have an appointment next week and am going to discuss with the consultant so any information appreciated. I see its listed on Patient as second line treatment.

2

I was given that and it doesn't contain steroids from what I understand. It is very moisturizing but still had a little bit of a burn in my circumstance leaving me feeling a little too much heat. Not sure if it was the ointment or my LS.

3

Joe, I ran across an interesting and encouraging article on that one months ago, but since I went the nutrition route I didn't pursue it. I think it' definitely worth checking into more.. but don't expect your doctor to know about it's off label use. the article if I remember correctly was very encouraging but a very small study.   

oh, here I found the one isn't that nice that google keeps a record of where we have been? 

Successful Treatment of Anogenital Lichen Sclerosus With Topical Tacrolimus   Markus Böhm, MD; Uta Frieling, MD; Thomas A. Luger, MD; et alGisela Bonsmann, MD

Author Affiliations Article Information

Arch Dermatol. 2003;139(7):922-924. doi:10.1001/archderm.139.7.922

 

4

Thanks Nancy, I have read a few articles (some dated back to 2003) so will have a look at that one as well.

I mentioned it before at an appointment but they didn't seem interested but now I have more info I will be asking again.

5

Thanks Julia, can I ask are you in UK?

6

Hi Joe, your post reminded me of a lady that posted on here and had good success with this cream.  If I remember correctly it is a very good alternative to Clobestol.

"Tacrolimus is used in the treatment of eczema, in particular atopic dermatitis. It suppresses inflammation in a similar way to steroids"

7

From what I have read its considered a second- string player, only if the Quarterback ( Clob) doesn’t work or you hv a reaction to it. This is what I had written down in my research notes: “Tacrolimus ointment .1% adults ( Protopic brand) -suppresses immune system and eliminates inflammation by inhibiting an enzyme needed to replicate T- cells ( should be used as a last resort, side effects )”

Hope this helps.

8

Thanks for that Guppy. Will see what they say at appointment. 

9

I will ask about side effects at appointment. I am interested in it because I read somewhere that although they say clob doesn't thin the skin on vulva area it does on the skin around back passage. I have LS in both areas but don't want to be using something that in the long term is going to give me more problems.

10

Hi Joe... I was given tacrolimu... Made me so sick I was in bed 3weeks! I had no idea all the sick I was feeling was caused by that cream. I do believe I had every side effect... The nausea and just general sick was the worst!! Just be aware of all the side effects...just in case you get any of them !! Best to you !! I have learned many things about LS since my flare up in April. If you have any questions I'm here...I certainly don't know it all... But have learned enuf to live my life in peace...most of the time !...Lol...

11

Thanks Sandy I will keep that in mind. Good to hear that things are manageable for you.

12

Hi again... Just wanted to mention that baking soda baths are the best... I use it as a rinse every time I pee also.. and follow up with Black seed oil... I used to have the white spots...they went away !!..Dr was surprised ! But not interested in what I did to get there... ??

13

Baking soda baths for me too, I will get some black seed oil and try that, I use hydramol, clob(minimally) and aloe vera at present, have previously used olive oil and coconut oil but didn't find them particularly beneficial for me although I know other people have. It seems there is no set formula for LS management and I'm quite sure my recent flair is due to medication I've started so am needing to change my approach. Its a total bummer. 

14

Hi Joe,

i use protropic, have done for a couple of years as I had a bad reaction to the clob. I’m happy with it... I also have hpv.

Samantha

15

HEy Samantha! thanks for that. I looked up protopic but none of my googling came up with a product of that name... BUT Amazon offered up several alternatives one of which is called the  Mother of All Creams. I looked into what they were pointing to.. all nice we've all heard of, but it had the added AMARANTH oil... now that perked up my ears - what about it?  It turns out amaranth is called a complete protein because it has LYSINE in it. Well that's even more cool since that has already been in my list of what is needed to aid Autoimmune disorders.  But it didn't know about amaranth as a complete protein  -

GRIN   so NOW, I'm going to get some amaranth and learn to make hot breakfast with it as I learn how to be a vegan. smiles !! so thanks .. I don't know what is in your protopic but this was a very fun and fruitful  adventure down another rabbit hole of LS. 

16

Hi Samantha, do you just use it when flared or do you use it on a regular basis?

17

Hi Nancy, protopic is a trade name for tacrolimus I think.

"1 g of Protopic 0.1% ointment contains 1.0 mg of tacrolimus as tacrolimus monohydrate (0.1%)."

18

Hi, I use 2x a week or if I have a flare. Yes it’s protopic - spelling autocorrect. My dermatologist advised me it’s second line treatment as it’s 3x more expensive than clob and that’s why they say second line and don’t prescribe it often. Also it’s a newer discovery for use in LS to clob. She said golden rule was clob and if you have a reaction to use this... which I have for a few years now. Clob gave me ulcers.

19

I notice no one mentions using Triamcinolone Acetonide. Was prescribed this steroid cream along with hormone cream. Doc said the LS was a result of lack of estrogen in my case (70 yrs old). Told to use this steroid every night along with hormone cream (for AV). Was able to tolerate the hormone (estradiol) for about 6 weeks before vag burning began. Now applying twice a week only.

After 2 1/2 months steroid  suddenly caused inflammation, redness, burning. Stopped using, informed doctor's office, but have not heard back from doc (on vacation).

Is this particular steroid an unusual treatment? It was surprisingly inexpensive (compared to very expensive hormone cream). Had been prescribed it once before by a dermatologist for a red patch on my face that was diagnosed as seborrheic dermatitis (also on scalp). When I told my GP (who had skin issues of his own) he said that an anti-fungal cream was more appropriate. Didn't find that either reduced the redness, but then I didn't use them religiously. I put a little concealer on it and don't think much about it. Obviously the LS has got me concerned.

I have no white plaques that I can see, only a thin white outline inside buttocks. It is difficult to ascertain which cream has caused most of the positive results as I have used them together. According to gyn at checkup after 1 month she said things were coming along nicely.

20

Nancy, we are probably in the same age range (70). Was your LS said to be a result of lack of estrogen? Do you use estrogen cream as well?

What particular diet are you following? I eat basically a Mediterranean diet. Use no added sugar with the exception of honey sometimes. Don't eat many sweets. I do drink kefir everyday and it has pretty much resolved my IBS. No doctor ever suggested it; I tell them about it. The gyn did not mention anything to me about diet re the LS either. 

I did ask her about using olive oil topically for the LS. She said it would sooth only; not heal. Only the steroid would do that, but now I am reacting to the steroid.

thanks.