More patient control of Pyridostigmine (Mestinon) dosing?
The acetylcholinesterase-inhibition properties of Pyridostigmine (pyri) only last a handful of hours. The doctor's Rx very specifically regulates the dosing period and amount. For example, a common Rx for pyri is 60mg 4 times a day. Some patients take it more or less often, and at a higher or lower dosage. On top of all that, we have to suffer the med's side effects such as muscle cramping/spasming/twitching/etc, nausea, diarrhea, blurred vision, watery eyes, and so on.
I'm currently symptom-free and between flare-ups, and am weaning down on the Prednisone. I recently convinced my doctor to let me reduce the pyri to 30mg 4xday, because I have no MG symptoms and yet am suffering the med's side effects anyway. Now on the 30mg dose I'm still symptom-free and the pyri side effects are greatly reduced (esp. muscle cramping/spasming).
So my question is, do you think doctors should give us patients more control over how we use pyri? Also, should we even be taking pyri at all when we are MG-symptom-free (i.e., in remission)? Of course the doctor will have to be assured that the patient already has experience with pyri and has an understanding of how it works in MG, before granting more freedom of use; this is very important.
I'm interested in hearing how others have been able to modify their pyri dosage based on the severity of their MG symptoms and how successful they've been.
My doc started me on 30mg twice daily after I was diagnosed, but that wasn't enough to control my swallowing and speech issues for an entire day. He then bumped it up to 60mg three times daily but told me I could adjust this and the goal was to control the symptoms without increasing the side effects, which are mostly digestive problems for me. So I have found that taking 60mg twice daily does a reasonable job of keeping the symptoms tolerable. Unfortunately, I have to take other medications to help keep the side effects in a tolerable range. It's the old problem of one medication helping one problem but causing a different one, leading to another medication, etc. But getting back to the question that has been raised, I think the patient has to be in control as much as the doctor. This is the best example I can give: My doctor recently prescribed an antibiotic for a urinary tract infection. It came with 12 pages of "information" about the drug (6 pages, both sides). I put that aside to read later and took the first dose of the antibiotic. Later, as I carefully read through the 12 pages, I noticed the words "Do not take if you have myasthenia gravis" and "Very bad and sometimes deadly breathing problems have happened with this drug in people who have myasthenia gravis". I contacted my doctor (who knew I had MG when he prescribed the antibiotic) and he told me not to take any more of it and that he would prescribe something else. So - don't think you can rely solely on your doctor to prescribe a drug or its dosage for you - read about the drug before taking, see how it works, and keep your doctor informed. I hope that my experience helps someone else. There is quite a long list of antibiotics that should not be taken if you have MG and this may very possibly be true of other drugs as well.
I believe patient / doctor relationships are super important. You should always have a say in YOUR treatment. Whether that's in certain tests being performed and medications being administered. You always have the right to refuse treatment and ask for a second opinion when you don't understand or agree with what is being giving to you. I told my neurologist that my goal is to be on little to no medication but of course being healthy and symptom free in the process. After my thymectomy I asked my doctor to be on reduced medication and he gave me options and I was able to choose my plan. Once we both agreed it was set. Communication is such a key component that should not be overlooked. - Jazmin (MG team member)
I take glycopyrrolate in addition to pyridostigmine to counteract the side effects of pyridostigmine. Pyridostigmine on its own is very strong for me, especially since I'm on the petite side. However, I can't go without pyridostigmine either
my doctor always encourages me to control how much pyridostigmine I take. I typically take 60 mg 4x daily and have never been off of it. I have also tried 180 mg extended-release tablet at night, but I had too many side effects from it.
I feel like if you're able to understand how the medicine works and how long it works for, then you can ask your doctor if they would allow you to adjust the dose based on how you feel. I think this would be completely fine to do.
I think you should always talk to your doctor about taking pyri if you are in remission. It may vary from person to person. I've never actually been in remission. However, on certain days when I'm feeling better, and I'm at home, I might not take a dose. On the other hand, if i'm feeling better, but decide to go out, then I would take pyri. This way it will prevent me from having unexpected symptoms.
