Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Good day -
I hope this commentary finds you all in good spirits and health.
Had my every other month IVIGs last week (Sept 28/30). Also had flu shot on my way out of the Debakey VA in Houston, where I receive treatments that include iVIGs.
Up until this last infusion series, I was able to do light physical work in 10 to 15 min increments and rest for 20/40 mins. I would work until I would break out in a sweat then rest and hydrate. Work/exercise included raking, shoveling, Painting, installation of kitchen cabinets in our new Cottage, set tile and grout. Was feeling pretty good about being able to do some of that stuff. Would like the work sessions to last longer but......
Anyway - after the last IVIGs I have been beat. No problems eating or breathing. All I have been able do for the first few days after the IVIGs was sit - just tired. I am able to walk around and do the necessary stuff. I was able to do some caulking yesterday, but again today I just feel beat.
Am wondering - How many of you have experienced what I am trying to describe? I feel like I moved back a notch.
Could my "condition" be related to the flu shot?
My Neuro consistantly has stated that the IVIGs reduce the progress of my disease. I know that the IVIGs are used, most often, during Crisis.
How many of you are on Maintenance IVIGs?
How long have you been on this Maintenance program?
When you have your IVIGs, do you feel better? And if not, how soon after the IVIGs are you feeling better?
My eyesight is still OK - Some minor diplopia but manageable.
My mind/brain seems to be unchanged. Usually a bit foggy and seems like I am perceiving "life" in a state of altered perception. I can do math and stuff like that. It just feels like I am perceiving "life" at 80%.
Current medications:
Imuran 50 mg - Once a day - evening before bed.
Mestinon 180 mg - Once a day - evening before bed.
Mestinon 60 mg - 2 pills - 8 am and 5 pm.
IVIGs - 3 concurrent days - every other month. 5 treatment series. Had 3 monthly IVIGs before the current 3 day stint.
Prednisone - 5 mg - 3 pills - every morning.
Baclofen -10 mg - 1/2 pill - morning and evening. To reduce tremmors.
I do not want to appear to be whining..... I am just concerned.
Thank you in advance for your comments/thoughts.
Scott
I had my flu shot Monday and although I am in remission from MG now, I had a similar response -- tiredness as well as a somewhat sore shoulder for a few days.
I found this explanation from a quora discussion that seems to explain it well.
"Why would a dead virus make you sick? Well, it’s not actually the virus causing those symptoms; it’s your own immune system reacting to the virus.
When it senses an invader, the immune system ratchets up your metabolism, causing a fever and soreness. You’re using more energy, so you tire quickly. At the site of the injection, white blood cells rush to the scene to identify the virus, create antibodies, and engulf and carry away dead cells, virus fragments, and other debris created in the fight."
"All of that activity causes a mild illness. Some people don’t get sick, especially those who’ve already had a flu shot at least once before, because their bodies just casually create antibodies and don’t react to the extent that the person actually feels ill. Other people, especially those who are getting their first flu shot, react more strongly and have to take some time the next day to get a nap and recover."
My neuro told me that while on immunosuppression, I might not get much benefit from a flu shot, as my immune system may not respond and build the antibodies desired. Your reaction may be saying that yours is reacting and the flu shot will be effective. So it might be good news.
Of course, if it persists, you need to see your doctor.
Good Luck
Russ
When were you first diagnosed with MG?
I ask simply so that I can put your questions in the context of my own experiences., it's also fair to say that there are just so many variables with MG, the reactions each of us have to the medications and perhaps finally the particular skills and experience of the neurologist. The more patient's he or she has seen and treated perhaps the better they become?
For my sins I really found the first nine months to be tough: the MG progressed very fast, not so the medication and I had three IVIG treatment's in that period as we waited for the Azathioprine (Imuran) to catch up and kick in. I had two spells in hospital in the early days, not for anything too dramatic, initially for diagnosis, that was just about two weeks.
So, yes those first months were really bad. Mestinon in high doses is awful, in my opinion, as is Prednisone, that of course is why they try to wean us off it as soon as possible.
Back to that first question really, when did this all start?
I was first diagnosed August of 2019. I first experienced symptoms in early Feb of 2019.
That's quite a time for the likes of Imuran (Azathioprine) to kick in and I can see why you might be needing other support (IVIG). I take rather more Azathioprine than you do 125gms/day (but I also have IBD). I think I was on 75mg before the IBD. I might be heavier than you are and weight can have a bearing on the dose needed / prescribed. So, not really any answers from me, hopefully. more questions? You probably need a good discussion with your neurologist for him/her to tell you what they're thinking and where it's going.
Did they expect this to take so long before you stabilised would be my first question.
Let me just throw in an issue I have with Mestinon. It can give you the symptoms of MG if you take more than you need. Question 2 perhaps?
Cheers
Peter
My treatment, Including IVIGs have been on going for a bit over 1 year.
Am in the process of weaning off Prednisdone.
Have been on Azathioprine for about 4 months now. Baclofen was prescribed by my PSP to try to help with muscle tremors.
I have forwarded my above comments to my Neuro for his input and will ask a couple of your questions upon his response. Specifically Mestinon amount and Azathioprine dosage.
My diagnosis is Generalized MG. AChR positive and EMG tests have confirmed the diagnosis.
I have met with my civilian PSP and have a referral ready to move on if required. Not quite ready to do that yet.
I have found that the VA staff here in Houston has been great. Certainly the Covid-19 has made things more difficult for everyone, including my treatment plans.
I will work harder at communicating with my Neuro but can only base my expectations upon other's input and my own perceptions. This input includes a bunch of research that I have done, continue to do and also the input from you forum members.
In other words, I know what I might expect, but do not know what that means yet, specifically as it pertains to my treatment plan(s).
Anyway - My spirit is good. Just asking questions to understand better what questions I must ask. I am concerned that my physical abilities have regressed but am feeling better today than yesterday.
Thank you all for your input, support and questions.
Scott
The one thing I have found in relieving my symptoms is to take mestinon at regular intervals every 3 hours. When I am more active I have found that every 2 hours and 40 min are best. I take mestinon every 3 hours like clockwork. If I don't my symptoms worsen over time.
I am a bit surprised that you only take mestinon 3 times a day.
I also take 2x 60 mg and sometimes 3x60 mg of mestinon.
All the best...
---olaf
I would think that your schedule makes more sense than mine.
I used to take two 60s at noon as well. Stopped the noon dose due to effects and have been steady with 2 in the morning 2 at 5 pm and a 180 at night.
I must admit that I do not feel it wearing off before my next dose.
The medication we take is always going to be a bit of a roller-coaster, but I would be tempted to say that if the regime that the neurologist has put in place is working well, then the Azathioprine will have controlled/suppressed the autoimmune system to the point that we don't need anything else... The trick here is when and by much to reduce the steroids and the mestinon?
In my own case we carried on with a maintenance dose of Prednisolone of 5mg and I took Mestinon if I needed it, usually 15mg once a day, sometimes as high as a whole tablet.
None of us can escape the fact that we might have a flare-up or worse, but that is not the norm, and one would hope we all know what to do in such a situation and have that good relationship we need?
I don't think I have found that balance yet.
Guess no one here is on maintenance IVIG?
Feeling better today but still physically FLAT.
Will try some light work tomorrow and see what happens.
Hoping to hear from my Neuro tomorrow.
Scott
i decided to give my experiences and set back with treatments (or maintenance with ivg) from 2o12 t0 today
first one came after my plasmapherisis, started one a week for one month then on every 2 weeks, for 3months, the one every month for 3 months then the last set on ev3ry 3 month for the last 2, total 1 year
same thing when i got into big troubles , the last seet was the last of 2017 to the ned of 2018, that one ressetion almost cost me my life
my meds wher mestdone 180 mgs. dayli cobine with prednisone 35 mgs.decreasing every week 30mgs mestidone and 10 mgs of prednisone, until i reached the minimum of 30 mgs dayli of mestidone and 5 mgs. every other day of prednisone
these are the standart set for normal conduction of activities
all these resets that i had to endure where caused my excessive stres that i was unable to control
i dint want to get involve with meds that are for oregns transplants as they incure lots of dangerous side effects
luckily i hav 2 graet docs, one neuro and one endocrinologist which in manny ways i the most importand link., do to the fact tha all medications are cleared thru her as endocrinoly is an important factor for control of nosives meds.
i am going in the last 3 1/2 yrs in wich i never felt as good as now, i am allowing my self to drop my meds for a week or 2 as i feel that i med, without any disturbance
the following 3 facts are the most important to control mg, beside your meds
1) total control of stress
good luck
Andre
....."30 mgs dayli of mestidone and 5 mgs. every other day of prednisone" .....
This Target med level is where I would like to get - I think.
How do you get there?
How do you know when you can reduce a med?
What becomes the new normal?
I was feeling pretty good before my last IVIG.
I did hang about 30' of aluminum gutter today. 4 hours - on 10/15 mins, then off for 30/40mins. Of Course my DW was always present assisting and more important watching me sweat and telling me to rest.
Thanks to everyone for your comments and promise I will not make any med changes without my Neuro's knowledge. :-)
Scott