How I got my Molluscum under control (PLEASE READ)

I'm writing this post for anyone out there who is currently dealing with Molluscum and struggling to get it under control and be free of it. I tried just about everything possible for 7 months and finally became free of all Molluscum 3 months ago. Sorry this is a long one but my only hope is that someone currently dealing with Molluscum can find value in this advice and get a jump start on treatment instead of wasting time like I did.

Sometime in September 2019 I noticed 2 bumps high up on the shaft of my penis. I remember having a few small bumps on my scrotum for a few weeks prior to that, but at the time I just thought they were razor bumps and didn't think anything of it. This was my biggest mistake. If you ever notice anything out the ordinary with your skin, GO SEE YOUR DOCTOR ASAP! At the very least, you might pay a small copay and get to go home worry free, but being proactive with treating skin infections is crucial. Waiting and thinking a skin issue will go away can cause certain infections to worsen exponentially, which is what happened in my case (I also had an extreme scabies infection in college).

After I noticed the bumps on my penis I knew something was wrong because they were in a spot that I would never touch with razor. I showed my girlfriend (who had no symptoms), and I went to my doctor the next day. My primary care doctor wasn't able to diagnose it so I was referred to a dermatologist. The derm quickly told me that it was Mollusucm, which I had never heard of in my life, neither had my gf (you would think there would be more education about this common infection?). The doctor told me that it usually goes away on it's own, but there are some treatment options, I chose to start with cryotherapy as the doc said it was the most effective and wouldn't scar. What I thought was just a couple bumps turned out to be 19 bumps that my doctor found with better lighting and magnification. I was told that repeat treatments will be required basically 100% of the time, and to schedule a follow up appointment in 3 weeks.

Fast forward 2 months, I continued with my follow up appointments but was seeing zero improvement in my bumps, they had spread and gotten worse. My derm insisted that I just stick with the 3 week appointments for cryotherapy. I wasn't very satisfied with this treatment plan and this doctor didn't offer any alternative treatments or seem to have any sympathy for how long I'd been dealing with this. During the first 2-4 months I also tried the following at home treatments, all with zero improvement:

  • Immune boosting vitamins
  • Apple cider vinegar
  • Tea tree oil (+ mixed with DMSO gel for increased skin absorption)
  • Naturasil (all natural treatment from Amazon)
  • ZymaDerm body wash
  • Conzerol soap
  • Molluscum Blast all natural gel treatment
  • Tea tree oil body wash
  • Dr. Scholls wart remover (stings and blisters!)

I wasted a ton of money on at home treatments, while also paying a $60 copay to see my dermatologist for cryo treatments. At this point I went back to my primary care doctor and asked if he would be able to perform the cryotherapy so that my copay would drop down to $20 since he's not a specialist, and his office was a lot closer to my work. He also agreed to do 1-2 treatments per week, basically any time I found new bumps appear. I did 2 cryo treatments a week for about a month, on about 3-5 new bumps each time. After some time, my doctor was very confused why treatment was not improving my symptoms. He proposed that we try everything on the list of official treatment options. Over the next couple weeks / months, I ended up attempting all of these treatments, see parentheses for effectiveness):

  • Cryotherapy (worked well but wasn't stopping spread)
  • Podofilox (some improvement, caused a lot of inflammation)
  • Imiquimod (no improvement, this treatment option is basically a waiting game, hoping that your immune system begins recognizing molluscum as an infection to begin immune response)
  • Cantharidin (do not recommend, the treatment spread and caused blisters all over my groin, and didn't even help the treated bumps)
  • Valaciclovir (no improvement)
  • Cimetidine (no improvement)
  • Adapalene (no improvement)

At the end of the day, the biggest issue was that my immune system was not responding at all to the molluscum virus, which is crucial to your body ridding itself of the virus (my bumps were very small, very little inflammation and hard to get rid of). Also super important to note, is that none of these treatment options actually kill the virus. Even if you have bumps frozen with liquid nitrogen, the virus still lives in your skin and can spread. The goal if almost all molluscum treatments is to cause inflammation to provoke your immune system to respond and kill the virus. This wasn't happening with me.

After months of aggressive Google'ing I finally stumbled on a handful of medical article that studied the effectiveness of a drug called Cidofovir (topical cream) on immune compromised patients with molluscum and HPV (I had my immune system / chem panels done and got tested for HIV and I do not have a compromised immune system). Cidofovir is a compound that My doctor reviewed the studies that I sent him and agreed that it was worth a shot since my immune system was clearly having no reaction to the molluscum virus. Cidofovir is not a medicine that is readily available from a typical pharmacy, and it has to be compounded from a powder form into a topical cream which is what was used in the articles. After calling several compound pharmacies I was nervous that I wasn't going to be able to get my hands on Cidofovir, most pharmacies said that it wasn't available by their supplier. I finally found a pharmacy that offered to compound it, though I had to pay in full up-front. It was very expensive ($1050), and I opted for the 1% cream vs the 3% that was used in the medical studies as it is known to cause irritation and I was applying it to my groin. In hindsight I would have gone with the 3% as I had no skin irritation from it. Also, my doctor had gotten the medication pre-authorized by my insurance which helped when it came time to file a prescription reimbursement claim. Fortunately my insurance offers reimbursement for compounded medications that receive prior authorization and are not available at a standard pharmacy.

Also important to note, my insurance does not pre-authorize specialty compounded medications until all "first class" treatments are attempted. So if treatments aren't working for you, it may help to ask your doctor to tell your insurance that you've already tried everything. I realized not all doctors will do this but it's worth a shot and will save you a lot of time and money.

Here are the articles I found and sent to my doctor. Hopefully you can use these same articles to show your doctor and get approved for a Cidofovir prescription:

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(99)01782-1/fulltext

https://pubmed.ncbi.nlm.nih.gov/11444271/

https://jamanetwork.com/journals/jamadermatology/fullarticle/190453

https://studylib.es/doc/6354967/resolution-of-recalcitrant-condylomata-acuminata-in-a-pat..

At the same time I started the Cidofovir treatment, I had found a user article online from someone who had success treating molluscum with 80% Trichloroacetic acid (TCA, used for skin peels, very dangerous if not used carefully), which I decided to give a shot.

I was going a combination of things when my molluscum finally started to get under control and stop spreading. Here's what treatment protocol finally worked for me:

  • Disinfecting the area thoroughly with rubber gloves, rubbing alcohol and cotton pads.
  • Using a needle / lancet / pointed curette gently scrape the molluscum body from the lesion (the molluscum body / white part inside the lesion is where the virus lives) and carefully wipe up with an alcohol covered cotton pad. Disinfect the area again with alcohol.
  • I cut the cotton end off of a q-tip with scissors, and dipped that cut-off tip of the q-tip into the TCA, then applied the acid to the lesion that I had just scraped and disinfected. I made sure that any bleeding had stopped before applying the acid. (TCA can burn pretty bad and can scar if you use too much, I made sure to only apply a pin drop amount at a time, just enough to burn the open lesion and cause inflammation to the area. I did not end up with any scarring, though the skin irritation can take several weeks to clear up and look normal again.)
  • Apply the Cidofovir 1% cream to the lesion, and cover with waterproof spot bandaids. (I kept the lesions covered with small waterproof bandaids to keep the Cidofovir on the lesion and prevent the lesion from touching any other skin in the area).
  • When new lesions would appear that were too small to scrape / had no white viral body yet, I just disinfected the area with alcohol, let it dry, applied the Cidofovir and covered with a spot bandaid.
  • I applied the Cidofovir to every lesion twice a day. Once in the morning and once before bed. If i had gotten any skin irritation from the Cidofovir I would have stuck with once per day.

It was only when I started this treatment plan that I began seeing immediate improvement in the number of new molluscum bumps. After about a month, maybe 6 weeks I was only casually applying Cidofovir to a few red spots that I wasn't sure were totally healed yet.

This experience was extremely stressful and depressing, and put a huge strain on my relationship with my gf, so I hope that this information can be useful to someone. I believe that if I had this information earlier on, I could have decreased the time I spent suffering with molluscum by several months. I'm not a medical doctor and cannot professionally recommend any treatment, I only want to share what I experienced and what worked for me, in hopes that it can help someone else. This was a lot to try and remember since I've been clear of the molluscum for a couple months now, so if I can clarify or answer any questions, feel free to comment or DM me.

Other important things I did that I would suggest:

  • Wash towels after every use.
  • Change clothes often, never wear the same thing more than once.
  • Wash sheets often.
  • Keep bumps covered with spot bandaids after any treatment, to prevent spreading.
  • Don't exercise. I know this one sucks but sweating and constant motion / rubbing of skin will increase spreading the virus.
  • Depending on where your bumps are, try to keep them covered and contained so they don't spread, but don't cover the skin too tight as sweating will increase spread (I wore brief underwear everyday to keep the bumps contained to my groin, only a few were able to spread to my legs).
  • Begin treatment IMMEDIATELY. My girlfriend ended up getting 5 bumps on her legs. She received cryo treatment the following day and all bumps were destroyed and she never had more appear. I waited far too long thinking my bumps were nothing to worry about.