Mother just diagnosed
 

Hi,

My 87 year old mother has just been diagnosed with MG a few weeks ago. I've never seen her so sad in my life (she was still driving up until the sudden onset). Her major symptoms are the unfocused vision and weak neck muscles. She has been on the Mestinon for the past three weeks. The Mestinon has not helped these symptoms. Her next appointment with the local Neuro is in 11 days. Do they always wait a month or so before the second appointment and adding other drugs to the Mestinon? I would think that after three weeks the doctor would be ready to try the next step? Are there limitations to the drugs that can be used for an 87 year old? I assume Pred would be tried next?

Anyway, I'm just looking for some helpful hints as she begins her journey with MG. I'm trying to read these forums and offer her some hope, but I guess it's pretty bleak in the beginning. Plus she lives alone so I'm sure it's even scarier for her. We do have another appointment at the end of the month with a big city doctor to get a second opinion.

Thanks much for anything anyone can offer.

Dear RobTom,

I'm so sorry to hear about your mother's diagnosis. Did you (or your mom) contact the doctor to tell him that the Mestinon wasn't working? Sometimes it takes some adjustment to get the correct dose. I'm not sure what dose she is taking. Sometimes they start with a tiny dose, and then slowly increase it. Mestinon is the safest of the treatments, so doctors like to try it first. I think it works for many people, but not everyone.

Yes, they usually try prednisone next, sometimes in combination with the Mestinon if it is showing some benefit. There are other medications also.

There are some good websites with strategies for dealing with myasthenia gravis. Taking good care of one's self and getting rest is necessary. Being careful in the hot weather is important - heat can make symptoms worse. For me, I am better in the morning, and I feel worse as the day progresses. I try to get a few things done in the morning, either at home or elsewhere, and then plan to be at home in the afternoon and evening generally, because I know I will be more weak. If she has starts having trouble with breathing or swallowing, she needs to contact her doctor right away, as that could be quite serious. I'm not sure if this helps, but those are some suggestions.

Wishing your mom better days ahead,
Erin

Hi Erin,

Thanks so much for your response and kind words. The Doctor started my mother on two pills a day (1/2 pill every four hours). I'm not sure of the dosage. Then the second week when her neck muscle weakened, he upped the dosage to four pills a day. The four pills didn't seem to make a difference. But just the other day she called the doctor because the pills were causing intestinal issues, so she is back down to the two pills a day. As I mentioned, her next appointment is in little over a week. I was just unsure if I should have forced the issue and request an appointment sooner so that the doctor could try a second drug.

Much appreciated,
Rob

Hi, Rob. I'm sorry your Mom is going through this. MG is challenging, but it can be managed.

Might I ask how they made the diagnosis? Was it on symptoms alone or did they conduct the antibody tests or other one such as an EMG?

They need to make sure of a diagnosis first.

Prednisone comes with a catalog of serious side effects, which elderly people might not handle well. Plus, it is an extremely difficult drug to withdraw from. MG experts are tending to use it for a crisis-only these days due to that. It's easier to do a fast taper after having IV Solu-Medrol (steroids) and then tablets.

At your Mom's age, Pred would be seen as a drug she would always be on. Would she be comfortable with that AND the side effects? Diabetes is often a side effect. If cancer runs in the family, immunosuppression might not be a good idea.

Also, MG patients can become worse before they are better when given Pred.

Pred is also often a "knee-jerk reaction" of doctors, especially those neurologists who are not MG experts. IVIG might be a better treatment to try. It all depends upon her overall health and any other drugs she might be on or conditions she has.

Please have her B12 and vitamin D checked, as well as her thyroid, if it hasn't been done already.

If your Mom becomes worse, dial 911 (or tell her to do that). If she can't move well, breathe well, or swallow, that's an emergency with MG. She might need to take some precautions due to living alone. It might be time for a medical alert system.

She should have a medical alert card and/or bracelet as well. And all doctors and the local hospital would need to be informed ahead of time of her condition and any "action plan" in case she becomes worse.

Some people don't do well on Mestinon because of the GI issues. An MG expert should really be the one discussing all treatment options with her.

If she does indeed have MG, she needs to keep away from hot weather. It can make MG exponentially wore. Cold weather can, too. Lack of sleep, stress, infections, surgery, and any other stressors to the immune system can make MG worse.

There are certain drugs we can't take (i.e., Ketek/Telithromycin) or other ones that might make us worse. Go to www.myasthenia.org to learn more.

What else can we help with? There's a big learning curve with MG. First make sure that's what she has. Then, if she does, have her learn as much as she can.

I hope she will get the care that she needs!

Annie

Annie,

Thank you so much for all of the valuable information. There is so much to learn about MG. My mother was in the hospital in mid-April, she went in with a droopy eye and three days later she was released and told she had MG. Though they didn't have the final conclusive test at the time of her release, but I assume when she went back to the local neurologist a week later, it was MG because he kept her on Mestinon (I didn't go with her, my sister did).

I did order a Medical alert system for her, it should be in tomorrow. She did have breast cancer once but totally free of it now, but she takes a daily anti-cancer drug (not sure of the name). I live four hours away from her, but will drive up next Friday to accompany her on her next appointment with the local Neurologist. I'm not sure how much of an expert he is in MG, so I'm anxious to see what he would recommend next since the Mestinon hasn't helped with her vision or weak neck muscles. Though we do have an appointment in two weeks with a specialist in Philly to get a second opinion.

So I guess my big questions are do we try the Prednisone if that's what the doctor recommends next week? What happens when someone with MG catches a cold, is it very serious? Can MG crisis hit at any time and even when someone is on Mestinon and/or Pred? I'm trying to monitor things from 250 miles away without making her too nervous about what I find out.

I am so grateful for your response. I hope things are well for you.

Sincerely,

Rob

You're welcome, Rob. Glad to help.

I'm sure it's frustrating, and a bit scary, to be so far away when a loved one is sick. The first few months while someone is getting used to MG is when they need the most support.

As odd as this is going to sound, managing MG with rest—and not overdoing it—is one of the best "treatments."

When I went into a crisis in 2005, I had pushed myself way too far. That's something no MG patient should do, even on drugs.

"Newbies" need to give themselves time to adjust to what it means to live with MG. It isn't like cancer, for example, where you have treatments and (hopefully) then it's gone. MG is for life.

Yes, even while on other treatments such as Pred or Imuran, MGers can still go into a crisis. MG is not the same for everyone. If your Mom's antibody titers were high, chances are she might need more medications than some people. There is no algorithm to figure out how your Mom will do, unfortunately.

MG can be mild in the morning and more severe at night. Or it can be mild for months and then worse (i.e., in the summer). Many MG experts say this: "The only thing predictable about MG is that it's unpredictable." Great, thanks.

There is no such thing as "trying" Pred. Again, once a patient is on it, it's nearly impossible to withdraw. Many MG experts do save it for a crisis instead. It's important to wait until speaking to an expert before making any long-term care decisions. HOWEVER, if she is getting worse (as I described), more treatments might be needed in a hospital setting before seeing the expert.

I cannot emphasize enough the serious health issues associated with Pred, especially for someone elderly. Consider the issue of quality of life as well.

Some of the best tips are: Stay coolish. Get any infections taken care of right away. Get enough sleep. Don't overdo. Don't even sort of overdo. Socializing uses the most muscle groups, so nap after doing it. Put the chin downward while swallowing if that is an issue. If the neck is weak, use a U-shaped pillow around the neck. Prop oneself up with a couple of pillows while sleeping to help with breathing. Don't stand when you can sit, don't sit if you can lie down. Take a nap when the body says to. Say "No!" when activities would be nice to do but would make the body crash.

Most of all, report ANY worsening of MG to a neuro right away. Or report to the ER via 911 if progressively getting worse.

The thing about a crisis is that it takes longer to recover from that than becoming weaker from one activity. And how long it takes to recover from even an activity can be tricky.

I become worse the day after going out. But I become much worse on the second day, which I call "2-day payback." So we have to also be aware of our bodies on a daily basis to see what we can do and when we can do it. I usually only go out to do anything once a week, but I can only take Mestinon. I'm on inhaled steroids for asthma, which Mestinon caused, so that helps too.

Your Mom has to be aware of all of the variables of this disease. Don't be scared, though!!! I've had MG my entire life. I've only had one crisis. Although, I've had dozens of exacerbations. That's a "near crisis." I've had some almost crisis' too. But those were operator error!

Again, doing too much means the body is going to tank us!

Get her medical records. You (and she) need to know what the antibody levels were. And because there is more than one, that's important. There's also the MuSK antibody. And they are discovering that there are more of them (no tests yet).

I forgot to say that a pulmonologist is invaluable to have. They work with a neurologist in a hospital setting when a patient has a crisis. What they can do is to take baseline pulmonary function tests. And if a patient becomes worse, they can compare results. They can also do an arterial blood gas or an overnight oximetry, to see how a patient is doing at night. Everyone's muscles become weaker while sleeping, but ours can become even worse.

I have an oximeter (Nonin brand) to monitor how my saturation is. It has been helpful through the years to see any trends. For example, before my crisis, my O2 was at 94 percent while lying down (not my normal). It was also dropping lower. It's an inexpensive thing to have. I like the Nonin GO2, but there are other brands.

The breathing tests that a MGer should have, beyond the regular PFTs, are MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). They show how well we are doing at breathing air in and out. Yes, breathing is involuntary. But with MG, chest wall muscles can become weak and breathing is impaired. For example, my normal MIP is about -84 (that one is expressed with a minus before it). In the hospital, it was averaging -24. -20 is the time when a BiPap or intubation is started.

A neurologist is not a pulmonologist. Vice versa. I work with both.

A MGer can also have a peak flow meter to see how they are doing at breathing out. A pulmonologist could probably give her one.

I don't want to overwhelm either of you! But I am so grateful to know this information, and more, in order to manage my care.

Being elderly can make learning all of this harder, though not with everyone.

Ask LOTS of questions. Maybe even record the next appt. (and let the doctor know you're doing it!). Your Mom could replay the recording if she can't remember what was said. It's hard to take it all in at first!

Annie

Annie,

Thanks again for all the invaluable information you provided. I really appreciate it. My mother had her second appointment with the local neuro yesterday. I had my sister ask the question you mentioned above, specifically, was the blood test conclusive for MG. The doctor said that the blood tests from the hospital stay wasn't 100% conclusive for MG. Not sure what else needs to be done for it to be 100% conclusive, but maybe the specialist will have more info when she goes next week.

In the meantime, the doctor upped her Mestinon back to the four pills a day level to see if it can make some difference with her sight and weak neck muscles. She just keeps saying she wishes she could get her sight back most of all. Bright light also seems to bother her. But the local neuro didn't recommend any other drugs at this time. He did some tests on her arms picking her with needles she said.

Again thanks a ton for your knowledge! We're just looking to get to that point when there is some stability again for her.

Rob

Hi Rob hope all is well
In previous post you said that your mom had some intestinal issues with the 4 pills. Your mom could take 3 1/2 or 3 3/4 depending on her symptoms. My Neuro put me on 180mgs 2 times a day (that's 3 - 60mgs tablets) but that gave me SEVERE stomach cramps and SEVERE deihrea with cold sweats and dizzyness. So now I take between 135mgs to 150mgs 2 times a day depending how I feel (that's 2 1/4 to 2 1/2)

Thank you for the information! I will tell her about taking a slightly smaller dose if the 4 pills again give her intestinal issues.

Rob, Get copies of the blood tests. The doctor might not know how to interpret them. Also, the tests can change and do not necessarily reflect the severity of MG.

Also, there is dairy in the tablets, in case she has a lactose issue. She could always try the syrup.

Annie