Any treatment advice welcome
Posted , 7 users are following.
Hello everyone. I've had this condition for 8 years and recently I've been having a flare up again. Application of dermovate isn't really helping. Has anyone been able to return white patches of skin back to a healthy pink colour? Or managed to remove the itchy lesions? Although I am a man and welcome advice from men, I would LOVE to hear what has worked for all the women out there.
I hope you don't mind me posting in the women's area. I've never spoken to anyone about this disease, it gets so lonely and scary sometimes. It's nice to see there's a community out there doing so much to help each other with this horrible condition. Any advice will be much appreciated! 😃
0 likes, 11 replies
jody4151 Jami91
Posted
Don't worry, you're not the only man on this forum 😃 I am a female, age 68 and I've had LS for 25 years. When I was first diagnosed I was prescribed Testosterone ointment. Then it was changed to Clobetasol. I've been on that for at least 20 yrs and I think it works best for me. I use it more than it says on the package (usually every other day, ok'd by my doctor) and then use some other ointment the other days: coconut oil, A&D ointment, etc.
beverly52803 Jami91
Posted
jami, look for posts by someone who calls himself WeeDugie. He seems to have his under control (as much as it can be anyway).
susan78610 Jami91
Posted
Tacrolimus ointment has been a miracle for me. Much love.
Jami91 susan78610
Posted
That's good to hear Susan, what did it do for you? Where are you from? I've heard they are reluctant to prescribe tacrolimus in the UK.
beverly52803 Jami91
Posted
I think because it suppresses your body's ability to fight all disease, not just a particular one like LS. Gets tricky.
joanna43- Jami91
Posted
***please check out "an experiment with Borax" you may find it under the "hot" button .. it was a lifesaver for me! Works for everyone!
Wee_Dugie Jami91
Posted
Hi Jami, I am Dugie, as Beverly mentions in another response to you here. I have been dealing with LS ('Male BXO') for almost 8 years now, although I think the beginnings of my LS stretch as far back as my teenage years, and I am 62 YOA now.
What I would say is that you need to get at the fundamentals of why you are having flare ups. You say the Dermovate (Clobetasol) is not helping, but in my experience the only reasons this can be are:
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i.) it is not being applied correctly: it has to be sufficiently rubbed into the skin - I find spending the time to massaging the ointment (I would suggest ointment version only, cream is no good!) into the skin say for 3 or 4 minutes. I also combine the massage with stretching the skin at the same time - and this has also been recommended elsewhere as an essential part of dealing with LS to keep the skin as healthy as possible! Of critical importance is, you need to know what areas of skin are actually infected or weakened by LS, and, of course, the Dermovate has to be applied to ALL infected skin during each application.
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ii.) it is not being applied sufficiently frequently enough. I don't know what is going on in your personal life, but if there is regular sexual activity taking place you may well need to use the Dermovate everyday. Outside of this, certainly applying the Dermovate every other, or every third (2 non-apply days) day is likely why you need to be looking to do if you are getting flare-ups.
iii.) There can be many other critical factors such as diet and nutrition and the need to get the correct balance of Vitamin and Mineral supplements to help support a healthy as possible skin. There are many foods that some LS sufferers find that they have to remove from their diet completely. Excluding sugar as far as possible - particularly refined sugars - is certainly a good starting point to avoid. Going Gluten free is something that is also highly recommended. As LS is an Autoimmune condition, you can look up the other essentials regarding the correct dietary requirements online.
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iv.) This is what I refer to as the broader conditions necessary for LS to exist: in my case I had Phimosis in my teenage years and I overcame this issue by my own means. I applied lots of antiseptic skin cream and stretched my foreskin over an extended period of months. I was unaware that the regular use of soap on the head and foreskin area can have an accumulative effect that can eventually lead to problems, and I was not aware that when I washed my penis I had to make it completely dry, every time.
Fast-forward to my mid to late-50's and the skin of my penis became increasingly irritated, what I initially though was that I just needed to find the 'right' skin cream to help the skin of my penis to recover. The search was fruitless and simply made my symptoms worse.
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Essentially, in terms of what other people with different genital skin disorders can get as part of the 'necessary conditions' is that when they are using soap, shower gel, body wash and suchlike, and as part of their sex life they are applying lubes such as baby oil, or ordinary skin creams, or are regular condom users - all of these kinds of chemical based applications build-up to the point where the skin can no longer deal with what is going on, creating the opportunity for skin conditions to take root, or take hold.
So, for you - you need to be aware of the broader aspects of what can make your LS infected skin worse, or susceptible to flare-ups. If you have any further questions, by all means get in touch - I would ask that you keep contact to these Forums, or the Men’s Health / Penis Disorders Forum elsewhere on this site that I more regularly contribute to, so that other Readers can benefit from the information exchange. Web address is:
https://patient.info/forums/discuss/browse/penis-disorders-3405
Jami91 Wee_Dugie
Posted
Thanks for the info Wee_Dugie. How long must you use the dermovate in the manner you suggested before it starts taking effect. I've been doing this for weeks to no avail. Things seem to be getting worse.
Wee_Dugie Jami91
Posted
Okay, thanks for getting back to me! So what I was getting at above in some detail is that there must be something getting in the way of a successful outcome when you are using the Dermovate. This could be something as simple as: have you had the tube of ointment for longer than expiry date? If you no longer have the box, or it is not marked clearly on the side of the ointment tube, it is usually on the very bottom of the tube - the part that you fold-over as the tube begins to empty.
Some manufactures specify that a tube is only effective for two months once it has been opened - so you need to note down when you actually opened it, as well as knowing the expiry date.
For example, my most recent prescription was a box containing 4 x 25g tubes with a relatively short expiry date. I knew I was unlikely to use all 4 before the expiry date so I decided only to use each tube for 2 months only.
The other critical factor is frequency of application - when I have a flare up it is because I have not been applying the Dermovate frequently enough with too many 'none apply' days in between. What I do then is certainly apply every day, and if I am sexually active at the time I apply 2 or even 3 times a day, to the worst infected are, using a small amount only.
So, if these factors are taken care of, and you are throughly applying the Dermovate sufficiently frequently enough you should gain some clear relief or change in appearance after a few days.
If not, there is something radically wrong - what I would look at if everything I have described so far is correct (expiry date, frequency of application, rubbing it well-in, to ALL infected skin areas, etc) you have to consider quite literally everything the skin of your penis is in contact with. So this can be soap, shower gel, anti-perspirants getting to the area - all the way through to the washing powder used to wash your underwear and other clothes in.
I am quite happy to look further into the detail of what you have going on - but you need to look at the minute detail of what is happening for the skin of your penis, even something like your nutritional intake, lack of essential vitamins and mineral supplements can play a crucial role for your infected skin .......
Jami91 Wee_Dugie
Posted
Thank you so much for the reply. The ointment I had was in date, although it's around 6 months old. So I went to the doctors yesterday and got a new prescription. Problem is when I got home and applied it I realised I had been given the cream rather than the ointment. Is this a problem? I have an appointment with a GP tomorrow for a referral so I can just ask for another prescription for the ointment and go with the method you've suggested if you think I need to.
Wee_Dugie Jami91
Posted
If you have had this going on for 8 years it would be my suggestion that you get the ointment version as the impact you get between the two is quite different.
Can you also let me know whether you have ever seen a Dermatologist to give some expert advice to you personally, this can be really important as they can also discern what you have going on in the broader terms of health - and of course tailor the Steroidal type that may suit your circumstances better ....... ?