I saw the concierge dermatologist a couple of weeks ago regarding my hair loss. Wow, what a nice guy. And really knowledgeable. He got up close and personal with my scalp and a lighted magnifier of some sort and said that my scalp doesn’t look normal. “I was not expecting to see what I’m seeing.” He asked me if it was sensitive or if it itched. No and no. He said my scalp is red and looks inflamed. He decided to do a biopsy, which amazingly enough, was not painful. He injected lidocaine to numb it, but even that didn’t hurt. I ended up with four stitches in my noggin that just made me a bit nervous to brush my hair. I kept thinking I would snag one.
He said hair loss is often difficult and slow to treat, regardless of the cause. Most interventions take several months to show any improvement. Surprisingly, one of the things that has shown regrowth, “and I know it sounds cheesy,” he said, is the infrared helmet things you see advertised on the internet. He said 70% of people report success using those. He also recommended the following, in case you are thinning on top as well:
- Minoxidil 2% topical cream. I won’t consider this because they have found that even though it’s topical, it does find its way into the bloodstream. I just don’t want to take any chances with anything affecting my kidneys.
- Ketoconazole shampoo (Nizoral). This is an anti-dandruff shampoo but seems to stimulate hair growth.
- Negrita and Amole concentrated treatment, some sort of ointment or cream.
So… I bought the infrared hair thing, which I will probably start tonight. I bought the shampoo, and I will probably pick up the other ointment stuff this weekend. The problem is, I’m really bad at anything that requires commitment and follow through! So we’ll have to see how I do with this.
I think this means I might have to start washing my hair every day again because it’s going to have all kinds of crap in it. I stopped washing it so frequently when it started falling out thinking that might help, although the doctor said it really didn’t matter either way. “If it’s going to fall out, it’s going to fall out.”
Today I went back for the results of the biopsy.
Imagine my surprise to find out this is NOT in any way related to the medications I’m on or this weird disease I have. Not hypo- or hyperthyroidism, not related to the chemo, and NOT related to the steroids!!
I have lichen planopilaris, or LPP, a rare inflammatory skin condition that causes scarring and permanent hair loss, often affecting the scalp. It’s an autoimmune disorder.
Another rare disease? Were my parents cousins or something?? What the serious hell.
I literally had to hold up my hand, apologize, and interrupt him while he was explaining this to clarify in my tiny brain that this was NOT related to anything else going on with me, that even without this kidney thing and all the zillions of meds I’ve been on I probably would have wound up losing my hair anyway.
Yep.
Well ain’t that a kick in the ass. My brain still cannot process this. I was convinced it was due to all these meds in some way.
In addition to the things he recommended before, he will prescribe another topical treatment that I will have to get via mail order from a compounding pharmacy in Texas. He said it is otherwise very expensive but from this pharmacy, it’s $49.00. I didn’t think to ask how long of a supply that is. I would assume a month. He said I will apply it twice a day. Hmmm. How is that going to work? Do I have to go to work with this gunk in my hair?? I don’t know what it’s like of course but that will be interesting.
He also said that pioglizatone, which I’m on for diabetes, has shown some anecdotal evidence that it helps with this condition. My endocrinologist mentioned taking me off this medication since she doesn’t think I need it, but he recommended my staying on it if she’s okay with that.
Holy shit. While googling this LPP right this very second, I came across oral lichen planus, which has symptoms very similar to thrush, which I’ve thought I’ve had for several years from the steroids. But LPP and oral lichen planus are related, and it’s not unusual to have one condition if you have the other! Maybe I don’t have thrush at all! Maybe instead I have lichen planus! This would explain the lack of improvement when I used the clotrimazole lozenges. The mind wobbles!! (to quote Kelly Bundy.) I’m going to have to follow up on this.
Wednesday I see the oncologist. I had my blood work done over the weekend and all looks good to my eyes. I mostly look at my creatinine. The doc had said, “I’m not worried about your labs.” I said, “Well, I want to keep track of things because otherwise how will we know when things go sideways?” He said that we will figure out our next steps when I see him.
My guess is I’ll have to decide between no chemo and Velcade. I don’t know if I’m ready to just abandon chemo altogether yet. It would be one thing if this was the plan: If we had reduced the chemo to once a month and we had a year’s worth of data that my kidneys seemed to be functioning well enough that the decision was made to stop the meds. But to stop now just because the insurance company is being a bitch doesn’t seem like the wisest course of action.
Keep in mind my goal since the beginning of this: keep these kidneys going until I can retire in eight more years. What is the plan if things go south? Things deteriorated pretty quickly before. What if it happens again?
Trust me, the idea of being off chemo completely is REALLY inviting. Fewer drugs coursing through my body, my immune system would have a chance to recover, I would feel more comfortable doing things I don’t feel comfortable doing now (#1: swimming in a public pool again!). But I am hesitant to risk my kidney function simply because I’m forced to by my insurance, not because this is what the tests are telling us.
And even if it’s Velcade and the possibility of neuropathy, it would be for only one more year. Once a month, not once a week like before. Taking the alpha lipoic acid. Using the ice gloves and booties. Maybe, just maybe, I wouldn’t get neuropathy. And if it starts again, then we have the option of halting the medication.
So, a lot to discuss with him. I’m taking my ice booties to my appointment just in case.
Friday I have an appointment with the endocrinologist. She changed my meds from Ozempic to Mounjaro. I can’t remember exactly why, but she said she felt it does a better job of quieting the “food noise” in one’s head. That would be good. The Ozempic has done wonders for my blood sugar, but you know those people who say, “Oh I forget to eat now that I’m on Ozempic”? Yeah, no. That’s definitely not me. Forgetting to eat?? Not going to happen. We’ll see if the Mounjaro makes a difference. She wanted me to start it last week but I couldn’t get it from my pharmacy. After a week of “status delayed,” I finally had the time to call and see if I could get it from a different Walgreens. After three calls and being on hold a total of 43 minutes (no joke!), I was able to confirm I could get it at a different store. I’ll start it tomorrow.
I also got two more measles vaccinations since the antibodies never show up in my blood. I’m going to ask my PCP to request lab work to see if they show up now. But if not, no more measles vaccines! That was my 5th MMR since 2002, not including what I got when I was a kid. The employee health nurse at one of my clinics kept giving me THE JAB since the antibodies weren’t showing up. But if they don’t show up after 5+ times, I think we can just assume they’re not going to. I’m a human pin cushion!
I saw a meme the other day that said something like, “I long for living in precedented times.” I long for not being unique!
(I didn’t have the time to proofread this like I normally do. Short on time. Please forgive any errors! Thanks!)
Low, Low, Low 