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I am repsting this as I wish mor women look for other treatment optios. In all the years I have been a membe of this site, I only came accross one woman whom uses protopc as well.
I was diagnosed with LS in 2004 when I was 39 years old. I am now 48. After several treatments that made things worse or not much better my life became hell!. The pain became unbearable and ruined my life. I used diferent medicine over a period of 3 years, one of them was Clobatesol, it worked for a short time and then made things worse. Eventually after meeting several obg, I met a dermatologist that prescribed me PROTOPIC ( tacrolimus ointment) 0.1% ( oinment made in Japan). You may want to check it out with your doctor. I started to use the ointment 2 years ago, twice a day and slowly reduce the amount I use as I am getting better. The first few times I applied it I pannicked as I got a strong burning sensation, it went away after a few applications of the cream. Today I use it 2 times a week in the morning after my shower. I used Emu oil ( naturally protect and heal skin) the others days I am not using the medicine. The LS is pretty much gone and the pain is 99% gone, I can feel sometimes a minor itchiness like the beginning of a yeast infection and as soon as I put the cream on the discomfort goes away. I also reduce the amount of sugar I eat as I believe it may be connected to the disease. My life style is less stressful than it used to be which I believe also helps. I use gentle natural products for my shower and wear panties that have the most % of cotton. I hope my message can give hope to many women, as I felt at some point in my life so hopeless and very depressed with horrible pain that ruined my life for many years. This medication has been a life saver for me and I hope can be for someone else. Also I hope this message can bring hope to many women to never give up and continue to search what will give them the relief they need as everyone is different and what may work for one person may not for someone else.
Wishing you all the best,
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Thanks for sharing your treatment results; that is wonderful to hear!!!
I also continue to use Protopic (Tacrolimus is the generic name), and it's reduced my LS symptoms to virtually nothing. Once every few months I might have a tiny, tiny flare-up that lasts a few days... the area might begin to itch and/or burn a bit. But when that happens, I become more aggressive in applying the Protopic (daily, or perhaps even twice daily) until the flare-up subsides. If that's all I have to deal with, I'm not going to complain about it. I'm able to lead a normal life now thanks to this medication, and I am thrilled.
I also have to highlight one other point you made in your posting, in case any readers missed it: Similar to you, I would not have learned about Protopic/Tacrolimus if I had not gone to a dermatologist. This is a disease that is almost always initially treated by an OB/GYN, but in most cases, an OB is not fully educated on the disease. My OB did not know about Protopic; she only knew about the "old school" Clobetasol solution. So if anyone out there feels like perhaps their doctor isn't giving them all available solutions to mitigate this disease, go to someone else - preferably a dermatologist - and don't give up.
Best of luck to you Caroline, I wish you continued success with your treatment plan!
Thanks for your highlight, it is a vey good point to insst on the fact that dermatologist seems to know more about Protopic that OBG. Now I am reading more controversal post about " Clobatesol versus Protopic". let's face it, we have a nasty disease to deal with and at this point I feel that it is worth it to use the medication that gives me the most relief ( even if some people believe that it should be only a second option as it is not sure what the side effets/ damages can be such a "cancer"). Everyone should be the judge of what they need to do for themselves and this forum is only here to bring up awareness around the disease. I don't pretend to know best and would always encourage a woman to seek professional help, seek second opinions etc...and see what works best for her. All I know is that for me Clobatesol ( one of th potential side effect) make the skin thinner which eventually made things a lot worse.
Wishing the bes to everyone and never give up in finding relief!!!!
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