Topical Steroid for LS – Week 2

It’s been two weeks since I started using Halobetasol, a topical steroid ointment, to treat Lichen Sclerosus (LS).   I was told by my gynecologist to use it twice a day for 1 month, then once a day for a month, then every other day, and eventually twice a week for the rest of my life.  I’ve been learning a lot more about LS over the past week.  This video by Andrew Goldstein, M.D. is excellent (but be aware it contains pictures of female anatomy and surgery, which are not appropriate for all audiences):

Lichen Sclerosus: The Unspoken Pain from Charles Runels, MD on Vimeo.

This doc seems to specialize in LS – or at least knows a lot about it – and says that before applying the steroid ointment you should be soaking the area in water for 15-20 minutes to soften the top layer of the skin so the medication can penetrate to the lower layers that actually need it.  So just yesterday I started twice-daily baths.  A little inconvenient, but we do what we have to do.

My overall health continues to improve.  I’ve now lost 22 pounds since the end of January.  Yesterday I ate a hot dog (nitrate free) and some potato chips (Boulder Canyon, made with coconut oil) – and still down a pound today, which would not have been the case before taking the steroid.  Take a look at my fasting blood sugar:

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It seems to be recovering much more quickly since starting the steroid.  It’s now in the 90s, down from 150s and 160s in January.  Looks like walking lots of steps didn’t do me any favors, at least not with regard to fasting blood glucose – maybe it helped with post-prandial glucose, but I wasn’t testing that.

All of this leads me to believe that inflammation is at the root of my obesity and diabetes.  Not “food reward”.  Not gluttony.  Not laziness.  Inflammation.  Brought on by an autoimmune disease I had never heard of a month ago.   And what brought that on?  That is still to be determined.

So stop picking on fat people, world!  Fat is not a character flaw.  It’s a symptom.

Just checked my blood pressure – 131/80.  Not bad, but not good enough to get off another medication yet.

LS – 3 Weeks Later, and Current hs-CRP

Just a heads up…some talk about female anatomy today.

I decided to adopt the correct spelling of my new disease (LS) – Lichen SclerosUS.  Not SclerosIS.  I’ve been learning quite a bit about this beast. Do you know that this disease can cause a woman to completely lose access to parts of her sexual anatomy?  The body, in it’s autoimmune wisdom, decides to build plaques that cover the clitoris, narrow the vagina, and thin the skin, making sex painful.  Sometimes the urethra even gets covered and surgery has to be performed so you can pee.  Holy crap!  The standard first line treatment for LS is steroid cream or ointment – specifically Clobetasol, which my insurance company doesn’t cover.  From what I understand the steroid doesn’t reverse damage (plaques) that are already there, but it can stop new ones from being formed. If you already have them, you’re stuck with them unless you have some kind of surgery to remove them.  I don’t seem to have lots of plaques interfering with things – I guess mine was caught before a lot of damage was done.

It took a couple weeks for the doctor, insurance company and pharmacy to all put their heads together and figure out what medication I should be taking.  So a week ago I started taking Halobetasol – a cousin of the Clobetasol – which is covered by my insurance, so a tube is only $36 – quite the difference from the $300 I was quoted for the “Clob”.  I started taking it last Saturday.  The itching stopped immediately and hasn’t returned.  It had been minor but annoying, and now gone.  By Tuesday I was feeling really good – like even better than usual.  I couldn’t figure out why…then it occurred to me I’m now taking a steroid.  I love steroids!   So I was feeling great since January because of the Culturelle Probiotics, and now I’m feeling great PLUS.

I was concerned that the steroid ointment would make me gain weight…cuz you know, that’s what happens to people who take steroids like Prednisone.  Turns out the opposite has been true.  I now seem to be able to eat things that before would make me gain and hold onto weight.  For example, eating a hot dog – even a high-quality, grass fed, nitrate free one – would previously result in an increase on the scale for a few days.  Same with any kind of aged cheese, a few potato chips or crackers – basically anything other than what has become my standard diet of chicken, white rice, fruits, vegetables, and Daisy cottage cheese.  This diet has been very hard to stick with, but I’ve done it 95% of the time because I’m determined to shed weight and get off my blood pressure meds.  Anyway, calories didn’t matter much – I could substitute in something equal in calories and I’d still gain.  My weight loss had slowed to about a pound a week (I know, not too bad).

But since I started using the steroid cream for LS I’ve been able to eat things outside my normal pattern and continue to lose weight.  As of this morning I’ve lost 20 pounds since January – two of those pounds were in the past week, after eating a wider variety of foods that would have stalled my weight loss a couple weeks ago.  I’ve had a couple of hot dogs, some coconut oil potato chips, salad with ceasar dressing – all of these things would have been resulted in a stall or weight gain in the past.

Why would this be?  I’m guessing that inflammation keeps me fat.  And eating things that contribute to inflammation, even a little, cause an increase in stress hormones and shut off my body’s ability to burn fat.  I’m sure there’s a biochemical explanation for this that actually makes sense but I don’t have time to research it right now.  I’ve stopped counting calories and following weight watchers at this point – I just listen to hunger cues and eat till I’m no longer thinking about food.

Oh – I almost forgot!  Before I started the steroid I ordered testing for highly-sensitive C-Reactive Protein (hs-CRP).  I wanted to know if my systemic inflammation had dropped at all since my gut became happy on Culturelle, and didn’t want the results confounded by the steroid ointment I was about to start.  If you’ll recall, I have a long history of high readings on this lab test:

lab

My results this week:  8.0

My inflammation did not drop AT ALL as a result of the probiotic.  So this probiotic that completely removed my depression and returned my quality of life 100 times over has resulted in NO CHANGE in my overall level of inflammation.

That makes me wonder if maybe the LS – or whatever is driving the LS (Lyme?) – is really at the root of my high inflammation.  It seems the gut thing was just an additional problem, but wasn’t actually causing inflammation.  (My brain would disagree, but whatever.)

There’s some evidence of a direct relationship between LS and Lyme Disease (h/t to Susie for bring this to my attention!).  I’ve been pressed for time to research this fully but here is one article discussing a possible relationship between LS and the Borellia (Lyme) bacteria. I plan on getting tested for Lyme, and will be discussing this with my functional medicine doc in a couple of weeks.   I don’t have a lot of the other symptoms, but I’m determined to get at the root of whatever inflammatory process is running my biology right now.  From what I understand, standard Western Blot/ELISA tests for Lyme have lots of false negatives, and the IgeneX test is more sensitive, so that’s the one I’ll ask for.

It’s so amazing to be feeling better.  I don’t know how I managed to do all I did for so many years, feeling so tired and sad.  I wish I could help other people find their way out of depression, but honestly I don’t know if my path would help anyone else.  All I can say is this: keep looking for answers.

Lichen Sclerosis

I learned yesterday that I have (probably) developed an autoimmune (?) condition called Lichen Sclerosis (LS). Actually, annoyingly, it’s spelled “Sclerosus” which just looks wrong to me, so I’m spelling it the way half the internet does instead – “Sclerosis”.  Anyway, I went to the gynecologist for a typical well-woman visit, and come out with something new to worry learn about.

It’s a disorder that affects the skin of the genital area, causing pain and itching, and which can lead to psoriasis-like scaly patches and thinning skin.  Now, I don’t like talking about TMI on here – it just makes me feel weird – and this comes close.  So I’m not going to.  I will, however, complain about the price of the medication (steroid cream) to treat it.  $300!  My insurance is refusing to pay for it…so hopefully the doc will authorize a generic substitute.  I checked my insurance formulary and even the generic is outrageous, but is likely to cost me $50.  Doc says the LS is not something that will go away, and that I’ll be “managing” it the rest of my life.

So the first thing I do, of course, is find a Facebook group where I can get the REAL scoop on this from the experts – the people who actually have this problem.  Currently it’s not causing me any pain – just itching.  (I thought it was caused by histamine.  Nope.)  Looks like a lot of women are treating this with borax baths and cannabidiol oil (CBD).   It also appears to be at least somewhat correlated with other autoimmune conditions like hashimotos, which makes sense….once you have one you tend to collect more.  The interweb says that they’re not sure what causes LS, but because of this association with other AI conditions it’s assumed to be AI also.

So …what causes AI conditions?  Overactive immune system.

And what causes an overactive immune system?  A chronic infection.

Again, it all goes back to the gut…at least for me.

I feel like the inflammation from my gut is much better controlled now – my mood has been awesome or close to it for several months now, regardless of what I eat.  If I was a religious person I would say I’m blessed.  I do feel fortunate.  Still, the chronic inflammation from a nasty gut critter – for years – may have set the stage for autoimmunity.

A note about Culturelle Probiotics – and probably other probiotics, for that matter.  A few weeks ago I ordered several boxes from Amazon.  A few days into one of those boxes my mood started shifting back to being irritable and depressed.  This lasted 3 days – unheard of at this point for me.  At first I didn’t know why that was happening, and then I realized I had just opened a new box of Amazon-sourced probiotics.  I immediately switched to a box I had purchased locally at Walgreens, and my mood returned to awesome within a day.  This makes me think that maybe Amazon isn’t the best place to buy this or any probiotic supplement.  It would make sense that since we’re dealing with bacteria, freshness might be an issue…and really, we have no idea how long a supplement sits on a pallet at Amazon or in what temperature or conditions.  So a few days ago I changed all of the links on this blog for Culturelle so that they no longer direct to Amazon – now they direct to Vitacost.  Vitacost runs out of them now and then so I don’t think they keep a massive stock on hand.

So I learned a few things here.  Don’t get probiotics from Amazon…and also, I’m not cured.  Whatever is going on in my gut is being managed…but it’s not gone.