There’s good news herein about a new med, but I’m going to do a little rationalizing first of why I’d never tried it.
People with ME will understand why I didn’t try to switch practitioners while Dr. Cheney was alive. We all know there’s no cure; we all know the absolute most we can hope for is maybe to improve some symptoms, some of the time, and a lot of the time not even that’s possible. For those of us fortunate enough to be able to access specialists, it’s a gigantic undertaking to switch, and when do we ever have the energy to spare for a gigantic undertaking?
Plus Cheney had saved my bacon more than once.
My sleep went off a cliff in 2014 after a course of antibiotics. He had prescribed me vasoactive intestinal peptide months earlier, saying I could take it orally or intranasally, and I started with the former because he’d trialed it on me intranasally in an office visit and I had a fast, scary onset of tachycardia. After months of at best a few hours of sleep a night and a terrible decline, one night in desperation I tried a much smaller amount of it intranasally and slept. If I hadn’t had the VIP, I honestly don’t know if I would have survived.
In 2019, when I’d mysteriously lost 15 lbs. without trying, was struggling to keep my weight up to 102 and in another terrible quality-of-life decline with my local doctor apparently blithely unconcerned with my deterioration, Cheney was the one who suggested I should have the GI-MAP that turned up the two kinds of parasites I was carrying around.
For those of you who don’t have ME: Because there isn’t a unified kind of received wisdom for treating ME, if you can access an ME specialist, when you pick one, you are picking the set of treatments to which they commonly turn, and it means you probably won’t have access to the ones they don’t prefer. So I did all the Cheney Things for many years and left others aside.
I didn’t know anyone getting a miracle out of another practitioner with anything that seemed a plausible approach for me, and not expecting that anything could make much of a difference, while it may come across as defeatist to a well person, is in ME a way of realistically managing the terrible circumstance of living with this beast. I can tell you that if you find one ME patient who tells you something really helped, you can find four more whom it didn’t.
While Dr. Cheney was perfectly amenable to medication for sleep and beta blockade, otherwise he was mostly a supplements guy, so I’d never tried the handful of pharmaceuticals that some specialists will lob at the disease. If you make a list of those meds, you’ll find antivirals, rarely antiretrovirals, NSAIDs, sometimes IVIG, often treatments for co-morbidities like mast cell activation syndrome and irritable bowel syndrome, a motley assortment of others.
Dr. Levine is one who uses pharmaceuticals more. I asked her if I could try antivirals and while she does do that, none of my titers came back elevated enough for that to rank high on her agenda. First she wanted me to try something for the MCAS, then give pyridostigmine (brand name Mestinon) a try.
Pyridostigmine is an old, old medication – on the market since 1955. It’s typically used to strengthen the muscles in myasthenia gravis. Dr. Levine said she hoped it might help my POTS and allow me to be out of bed more. At this writing, it’s the subject of a clinical trial in ME.
It took me some time to give it a try; when she prescribed it she said to keep an eye on my blood pressure and heart rate, as it might affect them in either direction. That was a little intimidating. As I already have the heart-slowing, blood-pressure lowering effect of a beta blocker on board to take care of my tachycardia, I felt a bit nervous about what a bad day with low blood pressure or bradycardia – something I know about from friends with ME who have those troubles – might look like.
Eventually I got the nerve to start out with my usual chip of a tablet. The motto of the smart ME patient is “low and slow is the way to go.” You don’t want to go full blast first thing and discover dose-related spontaneous human combustion. I bumped up from a chip to 15 mg, then to the 30 mg she’d prescribed.
It was apparent it was helpful right away; these are activities I’ve been able to accomplish lately that I hadn’t been able to before I began it:
- Typing for a greater portion of the day (yes, part of the reason I’m writing here again)
- Taking over my own bathing, sitting in a shower chair
- Setting my hair sometimes
- Going upstairs once or twice a day, some days
- Taking a basket of laundry down to the basement occasionally
- The tiniest bit of singing
While I don’t feel it’s enabled me to spend more time upright, it’s definitely given me more muscular endurance and I’ve been able to do more of the things I usually do lying down.
I’ve also been able to do more of the thing people often do lying down.
Then there are some non-muscular things that have been improving, which may be about bloodflow, as explained in that Health Rising article I linked above, but I don’t feel like I can fully explain with the understanding I have of the med so far:
- I seem to need less sleep.
- I’ve been able to increase my therapy appointments from once a month to once every three weeks. I think I could probably manage every other week, but at the moment I have to leave a lot of dance card free for other medical professionals.
- Last week I asked Chimp to bring down the earbuds that came with my phone, which had never been out of the box. I’ve been able to begin listening to familiar music on them some. (Unfamiliar music takes a lot more brain.)
As for the vitals, the med has increased my heart rate a touch and my blood pressure a little more, though it’s still within a normal range, and I’m still figuring out what that means in terms of looking out for post-exertional malaise. Before the pyrido, I knew that if my systolic was 90 or higher in the morning, I was in PEM and I needed to back off. Now I’m getting readings in the 90s and sometimes over 100 in the morning, and I haven’t had enough incidences of PEM on the pyrido to be certain what the new threshold is.
Trying to figure out what to attribute the benefits to is a little slippery, as pyrido isn’t the only thing I’ve changed recently; I’ve also bumped up the liters per minute on my nocturnal oxygen, so that may be confounding things a little, but having used oxygen at night since late 2020, it seems to work more on resilience than on strength, and these changes feel like strength.
No plans to try to make things worse to try to figure out how much is which.
A notable benefit: I took both of the photos in this post. Our neighbors behind us took down mature trees over the winter, so that part of the yard is getting sunlight in a way it hadn’t. I twice noticed a show of spring color I hadn’t in prior years, and tramped out there to find out what it was, discovering crocus and Siberian squilla. It’s a good 20 or 30 feet further than I’ve ever been from the house under my own power.
I’ve only been taking the med for two months, and I don’t know if I should expect the current level of function to be a plateau, or if there’s the possibility that it might be additive over time. I’ll ask Dr. Levine the next time I check in with her what her experience has been.
A happy story.
This is interesting. Wonderful to hear something works – a bit. I tried pyridostigmin for my life long constipation, but after even one pill (can’t remember the very low dose) I felt so ill I did not want to repeat the experience. Should have gone like you with just a tiny little bit. Let us know how you are getting on. I always enjoy your posts.
Nice to see you, Inge. Urgh about your experience. It’s so frustrating that it’s so variable.
Gosh, Inge, how tough. I don’t blame you for not wanting to try again. That poisoned feeling is very compelling and I completely understand not wanting to repeat it. Thank you for the kind words.
Oh yes, that poisoned feeling we all know so well. I wonder how many other illnesses have that, and have not expressed it as such, or if it really is almost unique to us with PEM/malfunctioning mitochondrial energy issues.
I too started Mestinon at a ‘chip of a pill’. It took me about a month to get up to 15 mg 2x daily.*
Like you, I found it makes me more resilient at doing things I’ve already been able to do (less PEM from my chair-based activities & occasional kitchen or garden forays). It hasn’t improved my ability to stay upright by more than a few minutes before POTS kicks in.
I’ve plateaued at 30 mg 4x daily.
*As I was already quite depleted in stores of many nutrients after years of mal-absorption, I added in a daily phos-choline supplement to supply the raw materials for Mestinon’s action. So far it hasn’t ‘pooped out’ on me as other people have described. But then I am also a pacing demon, and rarely (nowadays) fall into the trap of over-extending because I ‘feel good’.
I’m glad it’s working for you, Jayne. That’s interesting about the phos-choline supplement – I take BodyBio’s phosphatidylcholine, and I know it’s greatly ameliorated my anxiety, but I didn’t know it might be instrumental in the effectiveness of the pyridostigmine. I’ll have to read more.
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