Posted , 8 users are following.
Does anyone here have experience with the following treatments?
*Intralesional steroid injection (right into LS lesion)
*Antibiotics (for anti-inflammatory): https://www.ncbi.nlm.nih.gov/pubmed/16961523
*Protopic (tacrolimus)
0 likes, 12 replies
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TerriG jj2013B
Posted
Ive have taken steroid, but orally. personnlly I felt it activated my LS even more. so I STOP taken them.
jj2013B TerriG
Posted
Thanks for your experience. I have read in the lit that intralesional (after 4 injections) is more effective than topical clob or oral steroids and without all the side effects.
TerriG jj2013B
Posted
Ive have taken steroid, but orally. personnlly I felt it activated my LS even more. so I STOP taken them.
TerriG jj2013B
Posted
Ive have taken steroid, but orally. personnlly I felt it activated my LS even more. so I STOP taken them.
Guest jj2013B
Posted
I used some tacrolimus ointment for a month but it was to get rid of redness. I don't know whether the redness was caused by the clobetasol and an immune system response but the tacrolimus did get rid of the redness. So, a doc is proposing a steroid shot right at the site of an LS lesion? What did they say that would do? Turn it back to normal skin? What are the odds of that? What sort of pain or side effects can you expect? Wouldn't do it until they explained all that.
jessica68771 jj2013B
Posted
I was diagnosed with LS almost 2 years ago (29 at the time). initially it responded super well to Clobetasol, but then in Jan of this year it just stopped working suddenly. It was like I could apply it everyday and it did nothing, it didnt even irritate the skin... it just didnt do anything for me anymore. My dermatologist said that this can happen with some people where the topical steroid "loses gas". The white had taken over and things were starting to fuse despite my compliance with treatment... so in March he said that he wanted to take a more aggressive approach, he put me on low dose methotrexate (commonly used for rheumatoid arthritis and psoriasis) as well as a pulsed dose of clobetasol 3x's a week, weaning the steroid when I was able. I have to say, this has been amazing. I had lost hope, all I had seen in these forums was stuff about clob and some natural remedies (I tried these and wish I could say they helped me, but they didnt). It took just over 3 months for the methtrexate to fully kick in, but it has been fantastic. I am lucky in that I don't have any side effects from it, but some people do as it is an immune suppressor... so it def isn't for everyone. The methotrexate has essentially made it so that my LS has turned off. The skin has returned to a normal color and sex is great. 5 months ago LS was consuming 80% of my thoughts... I was terrified about what it was doing and what it would progress to, but now I barely even think about it.
If you are struggling with your LS please find yourself a good and experienced dermatologist, this really is a skin issue- not a gyne problem. There is hope that everything can go right back to normal, esp if caught early on!
beverly52803 jessica68771
Posted
jessica, I assume the dr discussed with you that problems could arise from suppressing your immune system? Are you still on it or was it just for a long enough period for the LS to disappear?
I do wonder if LS in a 29 year old is even the same disease as that in a post menopausal woman, not to mention in men. My gyn said in my case it was estrogen related so that leads me to believe it is caused by different things.
I'm glad to hear you found something that worked.
jj2013B jessica68771
Posted
My derm gave me a list of ALL the possible treatments of LS, including methotrexate. It is further down the list. I hope I the 2d line treatments work but, if not, I will go to 3d line like methotrexate.
So glad it worked for you!
jessica68771 beverly52803
Posted
Yes he did. its actually not as hard on the immune system as prednisone, and there are far more people taking that for various things. I have had 0 side effects from the medication, I take it once a week, and then forget about it. I will be on it until there are 0 signs of the disease and there is no longer a need to apply any clob at all. So probably a few more months, and then I come off of it. Although I will be nervous to stop because it has been like a miracle for my LS.
I think everyone's cause for the disease may be slightly different... estrogen/autoimmune etc, but in the end I think it follows the same pattern.
jj2013B jessica68771
Posted
Glad to hear HOPE! 😃
susan43705 jessica68771
Posted
Wow Jessica, that's great you have had success with methotrexate. I will investigate that.
For me with the way the disappearing parts, there w on't be anything to treat soon. This LS is a monster.
I haven't seen a dermatologist about this. That might be my next step.
Continued success to you.
Techlady jj2013B
Posted
I've tried Protropic as maintenance when I'm not having a flare up but I haven't had great results. As long as I follow my maintenance routine Estragyn cream vaginally and Globetesol twice a week, I have been doing really well, skin is normal and irritation is minimal.