LS diagnosis confirmed (male)
Posted , 3 users are following.
After getting the latest biopsy results and conferring with another specialist at a leading university, I have been diagnosed with lichen sclerosus on the tip of my penis. I knew it was either lichen planus (1 out of 500 men) or lichen sclerosus (1 out of 5,000-10,000 circumcised men). Still processing I got something so rare (the odds of being struck by lightning in your lifetime is 1 in 3,000!)>
I was on clobetasol for 12 weeks but it didn't do much. Elidel the past 2.5 weeks. Hard to tell if it is doing anything but after sex the skin blisters up so badly. Looks awful although it is not painful.
The doctor said I have to manage it and that there will be discomfort or blistering after sex ("sex" meaning intercourse) but unless the skin swells permanently I have to balance risk and reward.
I'm a 55 year old male. The doctor gave me the latest lit review on LS for men because he said "you have probably been all over the Internet about LS and it is all about vulva and you think 'what about penises?!" lol
I got an intralesional steroid injection 3 days ago. The primary lesion (left of meatus) calmed down remarkably. The other side swelled (that side swells more after sex but goes down after 2 hours). The swollen part hasn't gone down so I am worried that skin is so weak. Time will tell.
He also gave me long-term (30 day plus) Rx for azithromyicin. He says some antibiotics have anti-inflammatory effects that do a lot for LS (or LP). See https://www.ncbi.nlm.nih.gov/pubmed/16961523
On top of that, he is switching me from Elidel to Protopic (tacrolimus).
I will let everyone know what happens. Since there are few men on here, feel free to ask questions and I will answer.
0 likes, 11 replies
SnappyCat jj2013B
Posted
jj - There is a guy on this group - his screen-name is Wee-Duggie, or something like that. He'll probably be on soon enough.
As for the protopic...I started it 2 weeks ago. The first 2 weeks were...not terrible, but reactive. first few nights I had heat...not burning, just a strong sensation of heat that lasted hours. Then for about a week, I had increasing itching about 4-6 hours after application. But, then, just like that, no reaction at all, except that I almost feel normal, like mostly symptom-free. Some people talk about stinging with it. I never had that. But, for everyone, the reactions seem to dissipate after a few weeks and the benefit is worth the mild discomfort. So, I think the protopic can be a really good thing...and I encourage you to give it some time...may be a really good thing for you.
jj2013B SnappyCat
Posted
Thanks for the advice! I will stick with it and hope for the best! đ
So far, only 3 days of course, but the intralesional injection to the really sore/painful spot has eliminated all the redness and pain! I don't think - and the doctor didn't think - the topical was getting through the skin. I had so many things on that skin before I got to clob that the skin was pretty tough.
Hopefully the intralesional injection will buy the epidermis time to heal and then topicals will work better.
I will keep people apprised. Thank God for this forum!
Wee_Dugie jj2013B
Posted
Are you in the States? Confirm whether you are circumcised or not? Clobetasol is the proven 'go to' initial treatment for LS and I would say that if it had little or no impact then you most likely were not using it correctly, either in terms of the way you were applying it, or not to all of the infected areas, or not frequently enough.
I am a male who has been dealing with LS for 8 years now, it took me quite a number of months to get the full idea of how Clobetasol could help my skin to be as health as possible, then to achieve the right way to apply it, and to get the frequency of application right. So yes, the practicalities of sex mean that the skin near the tip of the penis experiences a great deal of friction - this is not what LS or similarly infected skin needs until you fully know and have measures in place to keep your skin as healthy as possible.
Certainly for me, if I am sexually active I need to apply Clobetasol twice a day, otherwise the skin looks instantly poor to say the least. So in simple terms, the longer you can go without penetrative sex this will enable the initial treatment phase to be more successful, and thereafter you can establish a reliable means of alleviating symptoms, and get your skin as healthy as possible in the near future.
My basic advice would be find something that works in terms of the treatment, and don't apply anything else otherwise you risk one thing interacting with, and undoing the beneficial impact of the other .....
jj2013B Wee_Dugie
Posted
Yes, I am in the USA.
I am tightly circumcised (at birth).
Twice I had a doctor and a PA check the way I applied clob (this was after your detailed instructions in an earlier post, which I found quite helpful).
I had partial response with clobetasol. It is important to note that I have no visible white skin so it is not a matter of seeing whether it goes away. I have to judge by function and pain level.
I used only clob for 12 weeks. Then Elidel only for 3 weeks.
At this point, the doctor thinks a multimodal approach is worth trying. I had a positive improvement with azithromycin when this all began (before the LS diagnosis) and he informed me that antibiotics can help LS (because of their anti-inflammatory). Then add tacrolimus.
From what I have read, most people improve with clob - and I did - but it ranges from temporary remission (up to 20%) to partial response (that would be me).
The very challenging part in my case, he said, is that the LS is at the meatus and around it. It could enter the urethra which would be a nightmare but fingers crossed that doesn't happen.
At this point, I am not very optimistic about any treatment. I am glad clob worked so well for you. According to "Lichen SclerosusâPresentation, Diagnosis and Management," 75% of people see improvement (25% do not). 80% improve with intralesional injections (80% after 4 injections).
Wee_Dugie jj2013B
Posted
JJ, thanks for the further detail. I think I was putting 2 and 2 together and concluding your experiences do not sound typical of the UK health care system (the NHS, for the majority of us) - simply a Doctor giving a patient a literature review must be incredibly rare in the UK, where there is usually a dearth of information. For example, my use of Clobetasol certainly was not detailed to me, frequency initially maybe, then it was find what worked best for me afterwards. It is at this stage that I could quite simply have said that âthis Clob stuff isnât doing much goodâ and just have given up on it. I was not even told that I needed to ensure I applied it by rubbing it well into the skin.
This is where a lot of LS sufferers may be falling-short of the potential of Clobetasol, and this is why I state from time to time that it must be fully absorbed by the skin, to all infected areas and applied sufficiently frequently enough.
Just a brief note on circumcision from birth, when I first started on this site some UK based Medical information I read at the time suggested it was almost impossible for someone circumcised at birth to get LS, it was so rare. If there was a suggestion of LS, then it must be another condition for these Men the literature was suggesting.
Most of the responses I give on this web site are on the âPenis Disordersâ Forum and during the last year or so 2 or 3 men who were circumcised due to LS had been told âcircumcision would cure their LSâ - of course they still had LS after the circumcision, only now, they had no foreskin.
In terms of the Study Link you provide, it may be the Public Health training I received in me, but nothing can be elaborated upon or concluded on in a sample size of 15 patients, or LS sufferers as we understand them, particularly as there was only 4 males. As a health statistician would most often correctly point out, supposed âbenefitsâ could purely be down to chance, rather than being down to this factor or another factor in such a low study sample as this.
The other practical warning I would give is that you need to be particularly because of the location of your LS being on or around the Meatus, it is possible that any ointments or creams you apply could get inside the urethra and cause a problem.
Please update your Forum Post here should anything significant occur âŚâŚ.
SnappyCat jj2013B
Posted
I don't know enough about TCIs to know the difference between Elidel and Protopic. Do you know why your doc switched?
jj2013B SnappyCat
Posted
It is supposed to be stronger. It is also an ointment rather than a cream. Elidel only comes in a cream.
SnappyCat jj2013B
Posted
Thx!
Wee_Dugie jj2013B
Posted
It may be a rather simplistic understanding that I have, but all topical steroids used to treat LS should be ointments rather than cream versions which are used to treat other skin areas of the body rather than the genitals .......
jj2013B Wee_Dugie
Posted
From what I have read, I agree.
Elidel was marketed for eczema and it has no ointment version. Thankfully, tacrolimus does have ointment. I don't know if this is an off-label use of tacrolimus for LS or not (meaning FDA approval or not).
Wee_Dugie jj2013B
Posted
Thanks, keep is posted on any developments .....