MikeS
Forum Replies Created
-
HI, Rocky. I wish you luck as you start navigating the MG journey. Always keep in mind that, for MG, what works for one person may very well not work at all for another. Treat every recommendation not as advice but as a suggestion, i.e., “It worked for me so maybe it might work for you.” With that in mind, I have control issues similar to yours where, for example, if I stand up I’ll get a short, uncontrollable leakage of pee. I don’t have the problem when I’m between flare-ups and thus off mestinon, so I’m apt to attribute the lack of control to the mestinon. When I am in a flare-up I will, each morning, put a Depends Shield for Men inside the front of my briefs. It will catch any dribbles or drips and prevent a wet spot on my pants. It’s thin and comfortable and works all day.
-
I started this forum in 2022 and have had several flare-ups since then. When my most recent one started in April 2024 and then went into remission in July, I continued, for the first time, abstaining from cannabis because I want to verify whether it was making me more susceptible to getting a flare-up. Although I miss its anxiety-reducing properties and chronic pain relief, I do notice an enhancement in my mental capabilities including short-term memory, along with a reduction in “brain-fog”. So, for now, I plan to abstain from cannabis even if I don’t get another routine flare-up. I say, “don’t get another flare-up” because I have also started Azathioprine and it’s possible it might reduce or eliminate my flare-ups.
One thing I’ve come to realize about MG is that our lives become one never-ending experiment of trying new meds, procedures, doctors, tricks and hacks, as we blindly navigate our way to what we hope is the best level of MG symptom relief possible.
-
Your doc’s dosing schedule seems unusual for treating MG symptoms, but we’re all different and maybe he/she has had success with other MG patients. David-S and Michail have some good ideas that you might want to consider. Prednisone affects many organ systems in the body, so you have to be really careful when changing dosage quickly (every 5 days) and suddenly (20 mg to zero). Good luck, and I hope this works for you!
-
Yes. I have “bulbar” type MG so my arms and legs are not affected.
-
Robert: Since my January post I tried another method that works much better. Whenever I have a flareup I have to take 60 mg Mestinon every 6 hours. I asked a CVS pharmacist if there was any over-the-counter medicine that would relieve gas and bloating. She recommended Gas-X (or any med that is made of Simethicone). The maximum recommended daily amount of Simethicone is 500 mg. So I bought the 125 mg chewable version (which doesn’t taste bad at all) and take one each time I take a Mestinon. It made a big difference for me. Good luck!
-
Everything except infections.
-
Yes to everything!
-
My late-onset MG started 4 1/2 years ago with diplopia (double vision). That lasted a few months and then receded as ptosis (droopy eyelid) set in, mostly in my right eye. Months after that the slurring and swallowing problems started, along with facial muscle weakness, as the ptosis receded. For the past 3 years I’ve gotten flare-ups of just the throat, tongue and facial muscles (no more diplopia or ptosis) which last 2-3 months followed by approx. 2 months of remission until the next flareup.
-
That’s really interesting! I hope someone has a referenced source that might answer your question.
-
(Sorry for any duplication. The website wouldn’t let me edit my post. I added some at the end.
I take most of my pills (including MG meds) and supplements in the morning, before my iced coffee and banana. I take Fosamax first thing Sunday mornings and about an hour before food and an hour after ‘pyri’ (which I take at 6 a.m.).
I have Alexa set up to remind me, every six hours, to take pyridostigmine. I also always have Alexa send her/his messages to my fitness watch and phone in case I’m not home (which means I always bring ‘pyri’ with me if I know I won’t be home for a dose). It’s a bit of overkill most days, but occasionally it pays off even if I’m home, because I might be outside or in a noisy situation and won’t hear Alexa’s reminder.
By the way, always keep a small desiccant pack with any mestinon/pyridostigmine you take out of the bottle when you go out. Humidity in the air will fairly quickly start to degrade the pill(s) and they will become increasingly less effective over time. I always store some leftover ones, from my mestinon emptied bottles, in a tightly sealed container (sandwich baggies are good, for example, or a very small jar, etc.) you can even find info on the web about how to re-dry the used ones if you want to be obsessive (in a good way) about it.
-
I take most of my pills (including MG meds) and supplements in the morning, before my iced coffee and banana. I take Fosamax first thing Sunday mornings and both about an hour before food and after ‘pyri’ (as required). I have Alexa set up to remind me, every six hours, to take pyridostigmine. I also always have Alexa send her/his messages to my fitness watch and phone in case I’m not home (which means I always bring ‘pyri’ with me if I know I won’t be home for a dose). It’s a bit of overkill most days, but occasionally it pays off even if I’m home, because I might be outside or in a noisy situation and won’t hear Alexa’s reminder.
-
Hi, everyone. I just want to make sure that everyone reading this forum who is affected by the shortage knows NOT to substitute by taking three 60 mg tabs of mestinon (pyridostigmine) at one time. This is a legitimate risk and you could possibly end up on a ventilator (in the ICU) as a consequence, if not have a less harmful but still-serious reaction. Please, instead, consider talking to your doctor first about how to best space apart the three doses effectively. I know you MG vets know all about this, but maybe someone new at this doesn’t. Thanks for listening!
-
My answer: Occam’s razor.
-
Same problem here. I started Mestinon a couple of years ago and got diarrhea from the bloating. I asked the local pharmacist for the best over-the-counter (OTC) solution and she said to use simethicone-based relief. Gas-X was one OTC brand in stock so I tried it (the Ultra/180 mg strength) and it worked like a charm when taken with the Mestinon. Eventually my body adjusted to the Mestinon after a while and I no longer needed it. Gas-X comes in many strengths, so you would likely need to find one that works best for you. Good luck!
-
I started on Fosamax a couple of months ago when I got my first osteopenia diagnosis (via DEXA Scan). I absolutely attribute it (osteopenia) to Prednisone, which I’ve been on for almost three years now. I’ve been cycling up and down (40 MG <–> 10 mg) in conjunction with the periods of flare-ups and remissions. To answer your question, I’ve had no noticeable side effects from Fosamax, and this is the first prescription drug I’ve ever taken with that result. Most of the other prescription drugs that have given me enhanced MG symptoms were listed on the MG precautionary drug list (http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1). I’m sorry that your MG has become more difficult to control, and hope you get it figured out soon.
Mike S.
-
I did a cursory search on Google and it seems, at first glance, that this shortage happened primarily in Australia starting January, 2023, with spot shortages in Canada and Great Britain. If anyone has current information on this issue, especially if occurring in the U.S., please reply and include any relevant link(s). I live in California and use Pyridostigmine, and there’s been no problem with supply here.
-
I’ve kept up with all the Covid shots (vaccines and boosters) since the start of the pandemic (which happens to also be around the time my MG started). I’ve never had any symptoms from the shots (both Pfizer and Moderna) other than a little soreness at the injection sites. I don’t know if there’s a relationship, but I’ve also never had Covid symptoms whenever I’ve acquired a Covid infection (i.e., positive Covid test). I wonder, too, if the Prednisone or Mestinon that I am usually on are possibly responsible for negating the Covid shots’ symptoms. It’s truly fascinating that we’re all so different from each other!! MGFA should sell snowflake pins for us to wear.
-
1. Besides just resting or meds, are there other ways to deal with MG-induced muscle fatigue?
2. What triggers have you discovered that will definitely induce your flare-ups and how did you learn to avoid them (the triggers).
3. What solutions have you found that will relieve (some of) your side-effects from Prednisone.
4. Same as (3.) but for Pyridostigmine (Mestinon).
5. How much have virtual (Zoom) meetings helped you deal with your MG and specifically in what ways?
6. Do you use cannabis for relief from MG and, if so, how does it help you?
7. What online sources and websites do you usually go to for finding information/resources to help you deal with your MG?
8. Would you support the establishment of an online “library” of information and resources for all MGers to use (not MGFA)?
-
I thought Pyridostigmine was causing my watery eyes. I stopped “Pyri” a couple of months ago when I went into remission but the watery eyes haven’t stopped. Thus, I now attribute it to Prednisone, the only other MG drug I’m still taking. My Optometrist last year told me that I had Dry-eye syndrome, which I’ve only had since I started Prednisone a few years ago, so I still attribute the watery eyes to the Dry-eye (which I attribute to the Prednisone), because, ironically, Dry-eye does cause watery eyes (see: my.clevelandclinic.org/health/diseases/24479-dry-eye ).
-
There are a dozen or more good remedies suggested in this comment thread. Each of us is different in how we are affected by MG and medications, so each of us finds different solutions that work well for us, individually. You might have to go through various trials and combinations of remedies to find what your body likes best. What I found that works best for me when I have to be on Pyridostigmine 60 mg 4x/day is some food in my stomach.
I developed lactose intolerance well into my adulthood (about 20 years ago) and now I have to severely limit my dairy products consumption or else it’s diarrhea city.
Most importantly for me, last year I completely transformed my diet to exclude all processed foods (when possible) and rarely eat beef/pork and inflammatory-inducing food, while making my main daily meal a smoothie filled with (all raw and organic if possible) various dark green vegetables, certain fruits (esp. lots of different berries), oats, different types of nuts,and a couple of other things.
I take Prednisone, so I include pre- and probiotics daily to counter the destructive effects of Prednisone on my gut microbiome.
These remedies have, each in their own way, eliminated the constipation and diarrhea I used to suffer from when I started Pyri (and MG) about 4 years ago. Also, the radical change/improvement in my diet has made me significantly healthier overall, which I think has resulted in a reduction in the intensity of my flare-ups.
Good luck with finding what works for you, and do come back when you’ve figured out what does and let us all know. ❄
-
Prednisone will also cause memory problems.
-
My current list of supplements are:
Omega-3 (fish oil)
Turmeric
Areds-2 (inhibits macular degeneration)
B-Complex
D3
E-400
Calcium
Ubiquinol (reduced CoQ10)
L.Reuteri Plus (probiotic)
Recently I changed my diet such that my daily main meal consists of (all raw): vegetables, fruits and nuts, all in smoothie form. Periodically I’ll eat protein-rich foods like peanut butter, chicken, dairy products, meat, and so on.
I recently discovered that Turmeric can be a substitute for GERD (reflux) meds (like H2 blockers and PPIs) so I’m excited that I don’t have to take those any more. I have bulbar-type MG and my recent flare-ups are significantly less severe and I attribute that to my new diet regimen which also has me feeling much healthier now that I’ve cut out all processed foods. I take Calcium because I’m on Prednisone. The ingredients of my smoothie (based on my research and a visit to a certified nutritionist) contain all the essential vitamins and minerals that are not on my list above. I can’t emphasize enough how good nutrition can have a positive effect on MG symptoms.
-
Prednisone
Overweight
Patience
-
As with any other MG drug, it may or may not work.