Glans issue — was prescribed Protopic but not improving

@kuro
Did the Dermatologist say how long to use it?
It's not for long-term use and you at or near that point. I'd consult the doctor to see if it should be continued.
Is the condition improving?
Getting a second opinion might not be a bad idea either.
Take care,
Jake

hi jake,
thanks for sharing your viewpoint with me

he actually encouraged me to keep using more and continuously... and indeed on days that i used it, the redness/vein-like appearance fades... but once i did a stop they recur.

but i did a search online n see that tacrolimus is a relatively new drug and some warned about the prolonged side effects, thus the slight apprehension to this drug

theres actually another dermatologist that i will love to see as he specialises in genital dermatology so maybe i will try to secure an appointment with him -- albeit at a non-subsidized rate

Balanitis can be due to several skin diseases.
The diagnosis can be indeterminate even if you choose to submit to a biopsy.
Steroid atrophy can be a long term problem
which you will have to deal with. I would guess you have
tried other bland emollients such as aquaphor or
petrolatum. Protopic has been used off label and long
term for years in clinical practice. A second opinion
from the dermatologist with a practice interest in genital skin
problems is a good option. Keep area well lubricated and minimize friction when you are sexually active.

Thanks so much seniormed. Your reply gives me hope and confidence to move fwd with my case now that i know protopic has been used long term for years

I will look into aquaphor and petrolatum and seek out a second opinion. Tysm

Hi @kuro. Just to ease your mind, (Protopic) Tacrolimus is an anti-inflammatory drug used with transplant patients as an anti-rejection medication. It’s been approved by the FDA since 1994. So it’s not new and definitely tried & tested.
Most of us transplant patients, either solid organ or stem cell are on larger doses in capsule form of this medication…solid organ patients take it for the rest of their lives.

As a result of my bone marrow transplant I have what’s called chronic graft vs host disease, where my new immune system (from a donor) finds areas in my body to attack because it sees me as the invader. My issues are on my tongue.

I use the exact same tacrolimus ointment which you’ve been prescribed and have to apply it to my tongue several times daily. I’d spoken with my transplant doctor about taking it orally because it specifically states on the box not to take internally. There are a number of meds used multipurpose and off-label. This is one of them.

What I learned is that the amount of medication in the ointment isn’t at all what’s considered a therapeutic dose of tacrolimus (prograf). Minuscule compare to what is consumed in capsule form. What’s absorbed is local and not going to cause issues systemically making it ok to use long term. It calms the inflammation and eventually may help improve your condition. The end result is to correct your dermatology issues and sometimes the end justifies the means. ☺️ I was told there no time limitation for use as I may need this indefinitely.

Dermatologists recommend tacrolimus ointment routinely for patients with eczema and other skin issues. You saw improvement while using the ointment, I’d encourage you to keep up with the treatment in hopes of getting this corrected. What do you think?

Hi lori thanks so much for the assurance and i hope your condition has been improving

I do think that it is worthwhile now to try it again because the last derma didnt explain this thorough n i was worried about overtaking or overapplying again — so much so i also not sure why tacrolimus can aid in a skin condition

And indeed it has improved while i was on it — im just not sure do i have to take it forever? He did tell me my condition is due to the glans’ skin thinning — im wondering if tacrolimus can help the skin to ‘thicken’

Also, would you know is there a need to avoid the sun if one is on tacrolimus? I try to get lots of sun by swimming and tanning whenever i get the opportunity to do so

Tacrolimus is an anti inflammatory medication. So using it will calm that area of affected skin. When the chronic inflammation is gone, it may allow for the skin to repair itself. Our bodies have amazing regenerative ability so hopefully your skin will improve in time.

As far as sun…I get to be the old auntie here and stress Use Sunscreen! 😅
UV radiation is accumulative. To increase my credibility this is from the medguide for Tacro:
“ Improvements to your skin may occur after the first few weeks of treatment. Even though your skin looks better, it is important to keep using the ointment as instructed by your health care provider. Tell your health care professional if your condition does not get better within the first few weeks of treatment or if it gets worse.

This medicine can make you more sensitive to the sun. Keep out of the sun. If you cannot avoid being in the sun, wear protective clothing and use sunscreen. Do not use sun lamps or tanning beds/booths.While you are using this medicine, drinking alcohol may cause the skin or face to become flushed or red and feel hot. Let your health care provider know if you notice such reactions, especially if they bother you.”

As for how long you’ll need to use the ointment, that’s a question for your dermatologist. But try using the ointment routinely and longer to see if you get improvement.

Thank you so much!! I guess the keyword is also routinely... I remember now at the onset he asked me to use it daily... twice a day, which I did for months... But then the frequency can be reduced to few days a week.

Noted on the sunscreen 🙁 i shall not let vanity or my love for Vit D keep me too long under the sun, and especially without sunscreen... health is indeed wealth, and my body is slowly telling me so.

you've been a great help, and so is everyone who has replied earlier. Deeply appreciated < 3

Hi @kuro, just checking in to see how the tacrolimus ointment has worked for you. Have you been using it more routinely now and seeing improvements?

Hi Lori,

How have you been? Thanks so much for following up

Unfortunately I am not able to get hold of the medication after finishing it. Will have to wait for my turn to see the public institution here for skin specialist, which won't be till months away, or even next Jan/Feb

For now, I'm battling a bout of nerve/hand/arm issue/pain etc. since May still, which remains my top priority now as I need my hands in good shape for work especially

But I will update you if indeed Tacrolimus ointment is working well.

I hope all is well with you. Thank you once again for writing in