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After having a successful 6 month check in FEB where everything seemed fine and dandy. This week became quite sore down one side. Having checked i seem to have a sore patch on the side skin just inside the entrance to vulva, i think i can see a small shiney white patch. plus another sore bit back towards the outer skin of vulva. I know i had a bad weekend of alcohol and sugery things as in LONDON for afternoon tea. Thinking of applying a course of steroid tonight although it feels quite tendor! Is this the best plan of action??
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Yes I think steroid ointment is the best way forward, also use barrier ointment. Hope you feel better soon xx
Thanks Justin it does get you down when this happens. Especially when you feel like your just starting to manage it! xx
I know but as long as we are in top of it.
Hopefully will help long term xx
Hi Su - that sounds just like what I have at the moment. My doctor told me to use the steroid cream for 6 weeks and go back for a check. I had been rather neglectful in my care tbh. But it is very sore and tender in that area.
I forgot to ask if the application is both morning and night and if it's okay to use emuaid during the day. So am doing morning and night at the moment because of its severity.
Hope we are both more comfortable very soon!
I will start the steroid everynight as well as my normal regime and see how things go, I will book in a drs appt ahead just incase it doesnt as usually have to wait 2/3 weeks to get in! Im sure it will settle down. Its nice to just jump on here and chat to people that understand x
I know what you mean with the waiting times - my doctor is the same. I booked the 6 week appointment straight away so I don't have a problem nearer the time.Healing wishes for us all here! xx
Hi there, Su...have you ever been prescribed Tacrolimus ointment? It (0.1%) has been a miracle for me.
Steroids did nothing unfortunately except maybe temporarily, and also made me dizzy and have heart palpitations. Probably just temporarily halted the disintegration, which would be fine if it didn't have other side effects.
Basically, I applied the Tacrolimus twice daily for almost 4 months and once daily for a few weeks after that, and as of now (year since diagnosis) so far I haven't needed to apply it or anything else since.
I've also had periodic bouts of eczema, rosacea (face) and type 1 genital herpes for years, so it's not been fun living in my skin. I've abstained from vag intercourse for years now because it got REALLY bad before i found treatment.
Anyway, so i hope to spread the knowledge of Tacrolimus so that hopefully you all get it and use it early on and don't suffer for years like i have. And to give you hope because for the first time in years i don't feel 'raw' and my clitoris has somewhat normal feeling again.
No i havent Susan i use BETAMETHASANE VALERATE OINTMENT. 0.1% It generally works ok but i will see how it goes with this flare
Interesting...I looked up Tacrolimus (protopic) and had mixed reactions, at first. It is an immunosuppressant (so that makes sense), but there is some indication that it can be carcinogenic...hmmm...but this seems to be a very low dosage and topical...???
But, I did find an article in Journal of the American Medical Assoc. (JAMA) about its use on LS...are we allowed to cite a magazine article??? Well..I hope so. I thought this was interesting.. Will speak with my Doc about it... Because my Derm and my GYN have opposing views about steroid. Both know it works, but GYN thinks, "only use when nec, thereby avoiding thinning the skin" while Derm thinks, use 3 x week to prevent the LS symptoms which are "the" issue...and the skin in this area is highly resilient.
Anyway...here's the JAMA article
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
So, I'm curious about how linking to a medical journal that has peer-reviewed articles from researchers and physicians world-wide would violate this policy. Seems like people who use this truly wonderful site wouldn't really be in the market to get a subscription to JAMA...Not advocating anything, just sharing research articles???
Where did I err??? I really don't want to violate policy, but I don't understand.
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