Can too much Clob cause burning?
Posted , 10 users are following.
Hi Ladies,
If any of you are able to offer any input I would be so appreciative.
I was diagnosed with LS about a 16 months ago. Initially all I had was white skin and some silent fusing. My dr started me on betamethasone, it really helped with the itch when it would come, but unfortunately the white patches started spreading despite the consistent use. I saw a dermatologist in July and he switched me to Clob. Initially every day for a week. Then three days in a row every week to "pulse dose" it. This was for 8 weeks, then he said to use as needed.
Until Dec everything was fairly under control. I didnt have any major flair ups and could say that in general the LS didn't effect my day to day life. Then in dec I had a big flair up, no pain just severe itching around the time of my period. This took a few days to subside. Then last week I had another on, worse than anything I have had to date. The itch was unbearable, so I started the saturated borax solution that people on this site talk about (i may have over done it, i had it in a spary bottle and applied after every pee for a day, before realizing this may be too much).. I also applied the clob 2x's a day.. so now the itching is mostly gone but my vagina is insanely red and if I put my fingers on it has a very strong burning sensation (think friction burn). I don't know what to do. I am at my witts end and terrified that this disease is going to ruin me. I dont know if the burning is a result of too much clob... too little clob.. the borax.. what do you ladies think? Any advice would be greatly appreciated. I want to stop everything for a few days but am scared to stop the steroid abruptly. Sorry this post is so long. 😢
0 likes, 26 replies
jane08222 jessica68771
Posted
Ouch! Try Cortisone 10 ointment (not cream). Use water in a squirt bottle to cleanse after voiding (I used warm water) and only wear 100% cotton underwear....Jockey brand is wonderful.
Make sure no bath soap touches the affected areas.
Hoping you feel better SOON !
jessica68771 jane08222
Posted
Thank you!
emmy2018 jessica68771
Posted
hi sorry to hear how uncomfortable you are right now. i would definitely say it is too much clob. this is the most powerful steroid prescribed for LS i believe and only a small amount is required. i made my own post on here when i was first diagnosed and just started using clob every day and i was having exactly the same burning as you describe and very red! and that was only applying once a day so i think twice a day is too much. i was advised to only use a pea size amount (i had been using about 2 finger tip sized amount up until then) once i started reducing the amount it all calmed down. now i just use it once a week.
if i were you i would stop using the clob for a few days until it calms down and then only use a tiny amount moving forward
i also get flair ups around my period where it is itchy unfortunately but they are becoming less and less i havnt had a flair up for a couple of cycles touch wood xx
jessica68771 emmy2018
Posted
Thhank you so much for taking the time to reply. I will ease off the clob. This whole disease is so frustrating, but this definitely feels more like a minor burn which makes me think its not so much the LS as that, for me, has always just been severe itch and white plaques.
emmy2018 jessica68771
Posted
yes i definitely felt that the burning was different to my normal LS symptoms, it was like the whole area was angry and inflamed. it went back to normal after i stopped using it for a few days. clob is really powerful and you only need a really small amount. i know what you mean about frustrating, its such trial and error and never ending!
i stopped using sanitary towels and started using organic cotton tampons, this has helped me during periods- i have started looking at those menstrual cups as this would be better for the environment but i havnt had the guts to try it yet! good luck xxx
beverly52803 jessica68771
Posted
I have not yet experienced any flair ups and am using a milder steroid, but did experience a reaction to it once after possibly applying too much after a bout of diarrhea. I just stopped using it for about a week and all returned to normal. I'm not really sure why this happened as people apply it to skin tears. All I know is taking a break solved the problem for me the one time it happened.
Have you called the doctor's office for advice? I always do (though mine was on vacation when it happened so I just chose to stop). Told her about it later and she said that was what she would have recommended.
jessica68771 beverly52803
Posted
Unfortunately my derm is very dismissive of the whole thing. When i first saw him, after being diagnosed by gp, he didn't even ask to see it, he just told me to apply clob and eventually it will die out. I think I may stop for a few days and then try using the milder betametasone again
samantha15721 jessica68771
Posted
This happened to me so much so that weeing caused further stress on me the dermovate seemed to make it worse. But then every time I did a wee I had a bottle that had a spout and I squeezed the bottle to squirt water with a small amount of salt on to the sore area I did this every time. It did hurt but after about 5 days I did notice the difference and it did help. You just have to persist it does get better x
jessica68771 samantha15721
Posted
Thank you. I didn't apply the clob today and it is very slightly better. Really hoping it will continue to improve.
jacqueline96242 jessica68771
Posted
Are you in the uk ?
jessica68771 jacqueline96242
Posted
I am not. I am in Northern Canada.
jacqueline96242 jessica68771
Posted
i just t wondered as we cant get somethings here that you can and vise versa . i more or less agree with techlady . i do the same with clob and estrogen ( twice a week as maintenance ) but use different bsrrier ointments . i may try vaseline now . i alternate with epaderm and cetraban .
jessica68771 jacqueline96242
Posted
My dr has never mentioned estrogen cream. I wonder if its because I am not close to menopause (I'm 30).. or if its because he doesn't know enough about the condition to know its needed. Do you know what the estrogen cream is for??
beverly52803 jessica68771
Posted
Many of us who have atrophy due to lack of estrogen after menopause are using hormone cream. There is a theory that lack of estrogen causes LS. That was my gyn's comment to me. I have read no one knows what causes it, but the majority of people with it are post menopausal, so.....
However, children as well as menstruating women get it as well as men, so clearly no one has solved the mystery.
Don't think doctor's prescribe hormone cream to younger women with LS.
Techlady jessica68771
Posted
I was diagnosed almost a year ago and had been suffering for years. I have it well under control now so I'll share what I do.
I'm much more comfortable now and have been able to resume sexual activities again after many years. Good luck.
yolanda11663 Techlady
Posted
Thanks for this information, my mom used Vaseline too, and drs will say . it leads to infection. My mom never had these problems and infections. Thinking of trying the Vaseline too, if it helps you maybe it will help us too
beverly52803 yolanda11663
Posted
My gyn actually recommended vaseline to use along with hormone cream and/or steroid. Said the PH was neutral and therefore good if the creams were causing any soreness. It probably isn't good to use it internally as a lubricant, but externally it's fine.
jessica68771 Techlady
Posted
Thank you so much for taking the time to list the things that have helped you. I have an appointment this coming monday and will be requesting the altarax! This is very helpful, as ultimately my biggest fear is that this disease is going to put a stop to my sex life with my husband.
jacqueline96242 Techlady
Posted
i do more or less the same as you . im going to try vaseline . im like you in thinking that we should use a barrier so that urine and faeces do not irritate the skin .