Craig

Amy, I think it often goes like this with the multiple medications:  patients are started on prednisone because it’s fast, effective, and inexpensive.  But over time and/or at high doses it can cause a lot of other problems, like bone density loss, glaucoma, high blood pressure, and the bane of my existence, increased appetite. People on long t…[Read more]

Amy, I think it often goes like this with the multiple medications:  patients are started on prednisone because it’s fast, effective, and inexpensive.  But over time and/or at high doses it can cause a lot of other problems, like bone density loss, glaucoma, high blood pressure, and the bane of my existence, increased appetite. People on long t…[Read more]

Amy, in my case my neurologist prescribed Bactrim (as I remember it) to prevent lung infections while my immune suppression (prednisone and cellcept) is above some level.  I think she said when those taper down she’ll stop that.

Myasthenia is considered to be an incurable, progressive (but highly variable) condition.  One of the often quoted lines is “most people live mostly normal lives”, which sounds great but covered everything from “take your mestinon and go about your life as normal” to “you were able to shower and dress yourself today like most people, even if you…[Read more]

My situation is similar to Kelley’s, all my friends and family know though it took some time for the word to get around and, because I “don’t look sick” I sometimes have to remind them.  For strangers I don’t tell them anything unless I need to, but I give them (and friends and family) a solution right away if there’s something I can’t do – “You…[Read more]

I have decided that I’m not going to let most of it affect me.  I can’t control what other people do so, like I did during flu season before Covid, I manage my own risk.  The numbers and messaging from governments are a mess (“in the hospital because of covid, or admitted to the hospital from a car crash and tested positive for covid?”, “wear a…[Read more]

This is a near-zero-effort meal in prep and cleanup that I like if I need a break – black bean burritos. There’s a surprising amount of flavor for how by little goes into it, and if you care about those things it’s vegetarian, relatively high in fiber & low in carbs.

ingredients

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Hi Kelly, that’s the question we’re all struggling with I think – what feels safe for us at any time.  When I read your note, I think it’s probably good news that your husband has had both of the initial vaccine doses before he started the prednisone.  I think that would mean he is more likely to have developed antibodies than those of us who wer…[Read more]

My neurologist only recognizes voluntary muscles weakness as due to MG, and has even said “that’s not MG-related” a couple times (to which my response was “well I never had that problem before you started treating me”, and that allowed us to have a little reset in the issues they would address, especially if those things were caused by the…[Read more]

Linda, that’s certainly something that has been an issue for many folks. I find that watching on TV “checks the box” but missing out on the community experience is a big loss.  Attending weekday services is a terrific alternative. One of the churches near me set up a weather-permitting outdoor Mass each week, another has introduced a specific…[Read more]

I have built up a small inventory of all my MG medicines (maybe 30 days) by filling them promptly even if I have missed doses over time or taking advantage of dosage changes.  There’s a card with an up-to-date list of my prescriptions, pharmacy, and doctors that I verify at the beginning of every month. I have some chemical cold packs (similar to…[Read more]

I think they’ll find more ways to bring more people to or near remission – few to no symptoms with minimal medications.   The research and clinical trials are really exciting and hopeful, they’re learning so much about different underlying characteristics of the disease, and are converting that into actual clinical trials.  If you look at the pa…[Read more]

Scott McCormack raises a great point, that is also my experience.  My wife is more afraid of catching covid (or the flu, or anything) and bringing it home than I am afraid it myself.   (I’m cautious but not afraid)

“If you go out and catch something and die, it’s your fault – you didn’t wear your mask properly, didn’t wash your hands enough, di…[Read more]

I don’t feel like I have experienced additional stress, everyone has been trying to figure out what is right for them.  I made the determination I was going to do what is right for me at any given time and just assume that others are doing what they feel is right for them.  I guess any additional stress would have been in that I need to have a h…[Read more]

I knelt down to introduce a small child to my small dog and fell over when I tried to stand up – I hadn’t realized the muscles were working to hold that particular position and there was just nothing there when I tried to stand up after several minutes.  It scared the child’s parents pretty badly, it went from “oops!” when I fell over to almost a…[Read more]

I find that both mestinon and pednisone contribute to leg cramps I know that if I take more than 3x 60mg mestinon in a day that my toes and calves are going to cramp up when I lay down, and the higher my prednisone dose it the worse the cramps are. I don’t really like the taste of Gatorade but find that a small bottle daily helps, as does looking…[Read more]

Margeurite, this a great point:

I said no more interns trying , I wanted the most experience person in thes hospital, probably for Pediatrics and a Pedi tube. Shocked, they complied. It was done in 5 minutes. “

I went through a similar thing when I was on Soliris and developed meningitis-like symptoms.  They did a spinal tap, and by “t…[Read more]

The hospital works on shifts, typically 7am-3pm, 3pm-11pm, 11pm-7:00am.   Things kind of stop at the shift changes while the nurses and doctors hand off to the next shift.  Most stuff happens in that 7-3 shift.   Activity ramps up at 4-5am as they get things ready for the 7am shift, 7-3 is the busiest time, and then things start to slow down afte…[Read more]

If you’re able to eat & drink, order an extra drink or two with your meal. Having that extra orange juice or apple juice on the table is handy at 3:00pm when the nurse shift is changing and they’re all busy, or at 11:30pm when everything is closed, or if you dinner gets delivered to someone else.  Getting your hands on a package or two of…[Read more]

Congrats on your thymectomy! 😉  I hope your recovery is going well and that it makes a difference for you!

I have a harder time cleaning specialized tools like dicers and food processors so I tend to stick with the one knife that fits really well in my hand and has a nice grip.  I am also a proponent of the “let it soak for a while” school of c…[Read more]