In the final segment of the “Pushing Back at MG” webinar, host Shawna Barnes asks panelists a series of community-provided questions. Topics include weighing when to switch treatments and how to combat dread so one can live fully despite their MG diagnosis.
You can watch all the highlights from the webinar here.
For other MG resources, visit the Myasthenia Gravis Foundation of America (MGFA):MGFA plays an important role in strengthening the MG community — empowering patients and caregivers through education, advocacy, and connection, and contributing to global efforts that raise awareness and advance research.
Transcript
Shawna: So, now we’re going to go ahead and move on to the Q&A portion of the webinar this afternoon, this evening, this morning — wherever you’re tuning in from. And we’re going to answer a few questions that were submitted in advance by those who’ve registered.
So, I think we’re going to start with Doctor Howard for this first one, and then I’ll ask Vanetta and Bruce: what’s the threshold for a medication not working — as in, how much should I suffer from the symptoms before I switch or talk to my doctor about the side effects I’m having? What would be your perspective on that, Doctor Howard?
James Howard, MD: So, there is no single answer. It depends upon what drug we choose. So, for instance, um, I put you on prednisone. I expect it to be working within 2 to 3 weeks, and you should be doing exceptionally well within, um, 2 to 3 months. If I put you on a drug called azathioprine, it’s not going to start working for ten months, sometimes 12.
And you’re not going to have full effect for three years. And many of the other drugs take three, four, six months to just start working, and at least a year — nine months to a year — to really be — be helpful.
And that’s one of the difficulties we have. If I’m cycling you through drugs and it’s not working, my go/no-go point can be as long as a year before we make that decision. With our new therapeutics — what we call targeted therapies — that work exceptionally quickly, within days, a week, two weeks, we can use those in what we call bridge therapy.
So, I can start you on one of these drugs that’s going to take forever to work, but I have ways to treat you which produce rapid response and maintain it — then, at some point in time, take you off it. So, no one should have to sit and suffer. Um. Unless your insurance company doesn’t like you. Um, but there ought to be ways that we can combine therapies to give you rapidity in your response, maintain it while we’re waiting for something else to do its job.
Shawna: OK. Vanetta and Bruce, same question, but from the patient perspective: at what point do you approach your provider when you feel like your medication isn’t working as well as it used to, or if you’re having more crises, or anything else along those lines? Vanetta.
Vanetta: Um, I — it has changed. So, when I was 16 and, you know, going into my early adulthood, um, the threshold was extremely low, and it was just like, hey, I — I studied all night, and I had an exam the next day, and my eyes — I saw double vision. The medication is not working. Right. It was very much — I had a very low tolerance for how long I would give a medication time to work just because my ambitions were different, right? And my goals were different.
Now, fast-forward to today. I’m 39 years old, and for me, I feel like I have a higher threshold because I’m more willing to say, you know what? Maybe not pull an all-nighter. Maybe not go to this family gathering. Maybe not go on this vacation right now.
Maybe not tell my boss that, sure, I’ll take on that project where I have to be up at 6 a.m., you know? And it’s — it’s one of those things where I give my — I give the medication more time to take effect before I say, OK, this is it.
And I think, at this point, my only — like, my major threshold for me now is when I have the first difficulty breathing. That’s a no-brainer. If I have difficulty — I don’t care if it’s day one or day 21 — I — that’s where we have to do something. But when I get to the point where I can no longer care for myself, and I’m putting a burden on my family, um, that’s when it’s just like, I know we’re trying to wait, but it’s — there’s something else we can — we can do. But yeah, my — my threshold has definitely changed throughout the years because my priorities have changed.
Shawna: Mhm. Bruce, how about you.
Bruce: Well, one of the first medication — I know.
We’re not supposed to mention drugs, but the first medication I was on, I was taking one pill three times a day, and it was working fine for a long time. Then I noticed he kicked me up to one pill four times a day. And then we went up to five times a day, and it just started not working as well. So, that’s when we decided on this new one.
Um, but I did go through two different medications throughout the first ten years. Um, and like I said, when — because of my time frame — it was — my myasthenia gravis wasn’t that pronounced, so I was able to go through. But now I could tell if I miss a dose of one pill.
Um. And then I say, like, with this new infusion that I’m taking, um, it’s amazing how quickly that worked. That may be one of the drugs that the doctor was talking about — how, instantaneously, within — within a couple of hours, a day, my voice came back, my swallowing got better, my — you know, my double vision went away.
Um, so I have to say that right now, I think we’re testing that out because I’m only on my second — or second infusion cycle. So, hopefully, we can work out a program where I don’t have to take so much, or however that works out. Um, but to maintain a better quality and maybe not have to take as many pills during the day, um, that kind of thing. But yeah, right now, I think it’s just a — you know, wait and see how this works.
Shawna: Yep.
Bruce: That’s where we’re at.
Shawna: OK. How about: how do you differentiate between MG muscle fatigue and just regular — I’m just tired because my boss needs me to do this thing, or I was playing with the grandkids too much, or whatever it may be. How do you personally differentiate that difference? Uh, Vanetta.
Vanetta: Yeah. So, it’s funny you mentioned that because, again, I’ve gone through different stages of my life with this disease. Right. And so, um, becoming a mom and starting my own business and working full time — yeah, sometimes I’m just like, are you sure this is MG? Sometimes, you know, it’s not — you can’t put everything on MG. Sometimes it’s just you’re just taking on too much, and any person would struggle with this.
Um, the — the — what? What I do to measure, um, if it’s MG is that most of the time for me — specifically, specifically, specifically — um, when I’m having symptoms of MG, I also have fatiguability. So, it’s not just fatigue, but it’s fatiguability. So, if I’m — if I’m tired, OK.
But if I’m noticing that repetitive activity is also wearing me down, OK, that’s probably MG. But if I’m — I’m tired, but I can — let’s say, for instance, I can get on my Peloton, and I’m fine. Like, I’m not collapsing after, then maybe it’s — it’s just me needing to take a mom break versus call — having a conversation with my neurologist.
Um, so, usually, I’ll — I’ll check my fatigue ability to gauge if it’s MG or if it’s just, you know, life-related. Um, and then I’ll also — I’ll take a beat. Right. I’ll — I’ll give myself, like, that two or three days to say, OK, maybe take a personal day from work. Maybe, you know, have my mom take care of the kid, um, you know, and see what happens after a day or two of rest. If I’m noticing that, after a day or two of rest, I’m still fatiguable — I’m still tired, I’m still symptomatic — it’s the phone call to my neurologist.
Shawna: OK, Bruce, how about you?
Bruce: Um, I would have to say that most of my fatigue comes from the myasthenia. I could tell right away when my voice goes up — my — my — I become very nasal in my speech. Um, the swallowing type of issues — my upper-body strength more so than my core strength.
Um, just to give a little story: I was — my — my eldest granddaughter — birthday was last Sunday, and she wanted to make baked ziti. She wanted me to help her, because I’m the cook of the family. She wanted me to help her — him — melt through the process. My voice was really going down, but I couldn’t stop, because I needed to help her do that, and she was so accommodating to my speech problem. And, um, but I knew what it was. It was the myasthenia kicking in, and we got through it. She made a great pot of baked ziti, and everybody was happy.
Um, but I sat down and just — so — now, for a while, and, uh, the family was there, so everybody, you know, knew what was going on. But I could tell the way my body reacts. Um, my vision might start going. My — definitely my voice and my — my breathing. Not breathing — I never had breathing issues — but my speech.
And I could feel it kicking in now, and I’m probably due for my med, but anyway, um, that’s — that’s how it is. My — my actual fatigue — I would never want to have that. When I was not diagnosed with myasthenia, I was just going all the time, and I could tell it’s the myasthenia that’s kicking in that slows me down.
Shawna: Yep. I’m the same way. I’ve got the bulbar symptoms, and my voice is getting nasally. Um, and for me, I do have breathing, but I actually have it recorded on my voicemail, um, that I don’t answer my phone because I’m saving my voice for in-person interactions — so that way, you know, I can have that interpersonal connection.
Uh, for me, it feels like the MG fatigue — everything is heavy, because you just can’t lift your muscles because of the fatigue in the muscles themselves. And general fatigue is — it’s just — you’ve gone to the gym, and you have pushed and given it your all, and you’re just tired, and your muscles are fatigued that way.
And the heaviness is different than the — I’ve given it my go, and my legs are going to collapse because they’re jello — type of thing. It’s — it sounds silly to try and differentiate that — you know, fatigue is fatigue when it comes to muscles — but it’s really not. No.
Um, let’s see, our next question is: so, we’ve already talked about the medications and kind of where that line is. What about — what is your green flag, or what should the green flag be, for trying a new medication? Doctor Howard, this one’s going to be directed for you — or to you. Um, because, as you mentioned, you know, we have many of these larger companies who are doing the commercials, um, and bringing awareness.
But with that, I’ve seen, especially in some of the online support communities, that now a lot of patients want to try all of these new medications, thinking that it’s going to be the cure for them. What would you say to them or caution them? And what should the green flags be for — well, maybe this new medication or treatment option is actually a good idea for a particular patient.
James Howard, MD: I think the driving forces are, one, I haven’t met my goal, uh, and your clinician, uh, agrees with you. So, you still have persistent symptoms. Uh, and the second is: are you having side effects that are unwanted and intolerable? Um, virtually all the drugs we use will have side effects. Uh, but if they’re minor, if they don’t require intervention, they’re transient, uh, we accept those — we call those grade one.
Um, but if it’s worse than that, then it may be a signal that I need to consider something else. The problem we as clinicians have is: how do we choose from this menu? We have no comparative studies between our new drugs that are recently approved in the last ten years and what’s going to be approved in the near future. Uh, and so it’s based on, um, our best experience — uh, who we’ve talked to among our colleagues and their experience — as to what we choose.
Certain drugs have specific requirements for their use. And if one isn’t willing to do that, then, of course, that drug can’t be used. But, uh — um, but it’s one of the more difficult decisions we have. Where do we insert these into the treatment program? And then, overriding all of this is, uh, will your insurance company allow it to happen?
Shawna: Right. Uh, for the viewers, can you explain what a transient symptom — or.
James Howard, MD: Transient side effect.
Shawna: There you go. Thank you.
James Howard, MD: Yeah. It’s something that — that lasts a very short period of time. Uh, for instance, uh, you take an injection, and, uh, it produces itching and hives. Um, but if you take, uh, a drug — uh, antihistamine — and it clears it within an hour or so, we’ll accept that. Um, but if it persists, if there is, uh, skin breakdown for some — you know, um, patient of mine on a particular immune suppressant drug, we know the adverse event is diarrhea. But she was having 20 stools a day, and she became a hermit because she was so scared to go out socially for fear of social embarrassment.
So, she stayed at home, stopped seeing all of her friends. That’s not acceptable whatsoever. Um, it’s these sorts of things that would say, we need to think of something else.
Shawna: OK, great. Thank you. And the final bonus question that I have for everybody this evening is: how can people — or those who have been diagnosed with MG — how can they prevent the dread that this disease will limit their potential for living a fulfilling life? Or, maybe, how have you gone about preventing or attacking the dread — so that way the MG diagnosis isn’t the end-all, be-all, and you still strive for living that fulfilling life. Vanetta.
Vanetta: Um, that’s a — that’s a great question. And I think that, you know, even living with this 20-some-odd years, I still struggle with that a little bit. Um, I remember when I was diagnosed, there weren’t — I didn’t know anyone that had myasthenia gravis. No one had ever heard of it. Um, it was very, very, very rare. And fast-forward to, you know — I was 16 — in my 20s, I met — I believe she was 65 years old — and she was, um, a dentist.
And she came into the gym at the time when I was, um, doing personal training — she came into the gym, and she came in saying that, oh, I’m a retired dentist. I had to retire from my practice because I could no longer practice, because I had myasthenia gravis. I have myasthenia gravis. And the tears that came to my eyes — because up until then, in my mind, myasthenia gravis was going to take me out, and I don’t know how much of a life I can live with this disease.
And for me, because I had been in so many crises, I felt like at one — at some point in my life — these medications are not going to work. I’m going to become immune to them, and they’re just going to stop working. And that’s going to be the end. Right? And I lived with that very silently for a very long time.
So, to see someone much older than me, looking good, having a successful practice —
And seeing that she’s, you know — yes, she’s symptomatic. Yes, she has this disease, but she looks amazing. Um, it really — it — it — like, I don’t know, it’s something in me that kind of broke and renewed at the same time. And I — I think, for me, you have to allow yourself that moment of mourning when you’re first diagnosed.
I think people don’t realize that there is a loss that you experience when you are diagnosed, and give yourself that time. Like, when we lose a family member, they say you need to mourn. Give yourself time to mourn.
I feel like when you are diagnosed with this, it is OK. You don’t have to be a superhero for anyone. It’s OK to give yourself that minute to say, oh, my goodness, my life is about to be impacted, like, tremendously. Let me take a minute to, like, wallow — give myself that second to self-pity. Right. And then feel all the feels. And then you come out of it knowing that, hey, you have a whole community behind you.
And I think, to keep myself uplifted, my faith and my faith community has been the pillar of my success. I — I constantly remind myself that I’m not in this alone — that, you know, praying, having my relationship with God, knowing that, at the end of the day, you know, there is a plan for my life, and that even with myasthenia gravis, I may have lost something, but I have gained so much right now.
I have not — I would not have met Doctor Howard or Bruce or Shauna. I would not have met you guys if it were not for myasthenia gravis. So, even today, I have yet another thing to be thankful for with this disease.
Um, so I try to just live a life of — now that I’ve kind of gone through that grievance process — now, I live a life of gratitude, and I’m just thankful for — for it all. The good, bad, the ugly — all of it. I’m just — all of it. I’m grateful for all of it because it has made me the person that I am and the people that I’ve connected with. I don’t know if I would have liked to have experienced a life not knowing those people. So, I keep that in the forefront.
And don’t get me wrong — like, even now, like, I have my moments, especially with my daughter, when I’m — I’m too weak to do things for her. And maybe, you know, we’ve gone a whole week where she hasn’t had a well-balanced meal because mommy is in a crisis, and daddy is trying to be her caregiver.
And now, you know, it’s chicken nuggets every night. Right? But I think it’s important to give yourself grace and know that, hey, at the end of the day, as long as you have faith and you have love, it’s all good. It is all good. So, that’s — that’s my little advice.
Shawna: Well, and just a quick caveat to that. So, I have a 23-year-old son. Um. And he’s seen me go through the ups and downs of this. And I asked him, uh, a couple of years ago, you know, what his experience was growing up with a mama with MG, and he said that, you know, he had to grow up sooner than he — than his peers, but he is more compassionate than anybody that he knows. And he is able to go with the flow.
And I know this — you know, we’re taking a little detour here — but I’m sure we’ve got parents, um, who may be concerned in our audience. Mhm. Um, it doesn’t, quote-unquote, damage our kids having this disease as much as you think it does. They see you kicking butt and doing everything you can, and — like — they see it. They see you. And it’s not going to be the detriment that you think it is, because you can’t do the things that you wish you could.
You know, it’s — that mom guilt. It amplifies when you’re sick with this disease. And don’t let it. Because I swear to you, if I could get my boy on here right now, he would tell everybody the same thing. Oh, so, just caveat there. OK.
Vanetta: Thank you.
Bruce: Well, I have — I have a lot of blessings, too, because my children were all older when I got my diagnosis. So, I think my youngest was about 25, 26. And, um, with my — I have 11 grandchildren that keep me very busy. But when I was first diagnosed, I worked — I continued to work. I worked at Six Flags and as a tram driver. I mean, I could not stop myself. I had to do something. Um, then I took a position with a mental health facility to help drive clients around and — and work the front desk during COVID. And so, I had to keep busy there.
But I would say my family was my biggest driver. Uh, of course, my faith in God was — was what keeps me going. Um, and right now, it’s just a matter of doing things around the house, doing things for my family. Uh, when the grandkids have things, I go try to get to their, uh, their games or whatever.
Um, they — can’t always go because myasthenia kicks in, and I can’t sit out in a field for 2 or 3 hours. Uh, that’s rough, but you know what? I can do — I do. What I can’t do — I resign myself to that. Um, but, yeah, the family is the biggest — my biggest, uh, blessing to keep going.
Shawna: Absolutely. Doctor Howard, what advice — or what tips — can you give to maybe the newly diagnosed patient, or somebody that might be struggling with that dread of getting the diagnosis. How can they move from that dread through the grief process to knowing — or accepting — that they can live that fulfilling life?
James Howard, MD: I think we, as a medical community, have totally failed in addressing the mental health of patients with myasthenia. Uh, and part of it is the — the lack of resources. If you had cancer, you would be immediately surrounded by social work — a nurse navigator team that shepherds you through the entire process — that are at your side to provide support. We saddle you with a lifelong diagnosis that’s going to impact employment, social relationships, uh, putting food on the table, perhaps, and all. And we don’t do anything.
And I think this is now being discussed in our — our — our meetings as, when we get together, is: how can we start to address these issues? And — and I wish all of our clinics had dedicated nurses to myasthenia like they do in London, or, uh, dedicated, uh, social workers that are there to be able to handle: how do we deal with the insurance? How do we deal with disability? How do we deal with, you know, this and that? And so, we’re thinking about it. We’re starting to move, but it’s a huge deficit.
So, I think you have to have open discussions with, uh, your spiritual leaders. Um, I don’t think — I’ve not really pushed having family, because they’re so intimately involved, uh, it often makes the situation worse. I think you have to go outside — uh, speaking with your clinician, asking, uh, is there a psychologist that I can meet with, uh, who can help guide me through this? Um, but it’s a huge issue that we’re — we’re — we’re now starting to address.
Shawna: Wonderful. Thank you so much.
