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
Fingers crossed for you 1/2 Mestinon and 5mg Prednisone every other day just about equates to full remission, which perhaps, of MG patients, just 20% achieve. The rest of us, in the main, need to have the immune system kept in check for the rest of our lives. Pleased to hear that you won't do anything without the knowledge of your Neurologist - if you can't agree for some reason then be very careful how you proceed.
All the best
Peter
I have thought about infusion rate. I do not get headaches or chest pains - just bone tired - two weeks this last time.
I will check with the nurses.
Scott
Not sure what that means but will have an opportunity for this face to face to address these issues.
TJ from CA
Thanks for your comment TJ. :-)
Mestinon caused me muscle tremors. So I tapered off and actually with mestinon stopping cold turkey is safe (according to my doc). I took it as needed for a while and now havent used it in over a year. Night time muscle tremors were the worst for me and daytime I tolerated it better. I'm now able to take low dose magnesium at bedtime and all tremors have stopped.
We need to start a thread about supplements, many of us have had success with various different methods. One thing I do know...Ive never met an MG'er with the same symptoms.
Good Luck
I had a thymectomy 2 years in after my diagnosis. I started with 15 mg Prednisone daily, 60mg of Mestinon every 3 hours (non time release) and also started Cellsept 2000mg daily (1000mg morning and 1000mg evening).
Even after 2 years of this, I still had issues with my symptoms. I gradually increased my prednisone to 25mg, at this level I had much less symptoms, but more side effects with the prednisone.
My neuro wants to switch me to Imuran. Will see how that goes.
I never had Plasmapheresis or IvIG.
Over the years I have sought many reasons for "flare ups", food, stress and so on. I have found that the only things that help are enough steroids and rest. All the other factors are quite benign.
I guess your new normal will be different form everybody's. But similar that you will be on some amount of steroid and some amount of mestinon. Due to the cost of Plasmapheresis and IvIG it seems that will be reserved for flare ups.
Good luck and All the Best !!
---olaf
sorry i am a little late to reply your questions, but i do so now
in regard of the meds taken and reaching the natural goal of control i will ahve to make some clarifications i know that some people here disagree with me.
all my life i have beleived that less is better for meds, every body react in different ways to drugs
nut the most important is for us to be able to manage the toxicity of them this is the reson why manny of us may have trouble in achiving control
the cocktail created taken all fifferent drugs will cause havock in our life
when i became mg patient i took very seriously the fact that it was up to us to control our destiny, and after a very long set of discutions with my neuro and endocrinologist i set up my own way to seal with it.
i was to go forward witg theyr blessing in my endeviour
i give ny body time to adjust with the drugds of choice for mg. adapt, control, allow my body to work with it, i knew it take time, tehyr is no magic bullet,.
the more you jump from drug to drud, you are not allowing your body to fuction properly,
i do not beleive in taken drugs that are specifically made for organ transplant even do tha may work or not
fallowing your neuro inmstructions is the way to go but with honest converaations
the most importamt fact need to be explaine is the need to have an endocrinologistm as it is the only person whom will help you to walk thry the laberint of drugs safely and honestly
to me my best choice was to have woman doctors ofr this, i would not have a old goatr whom the only thing that they know to do "take the pill"
with thw woman doctors they will take the time to leasing and discuss your problems to the end
also i have changed my standart of life around but choosing the preper foods, regular exercsises like walking 45minute twice a day, morning and evening slow, brisk or wath you are able to master
stop all functions when you become tired , do not overdoo
when you get cramps , you can solution the problems with out drugs, but wit a tensil machine 15 minute will relaxe the muscles.
if you take supplements, the only ones that i atke are manganese for control of thymus function, wit b5/, turmric ginger for better absortion of meds ect..
these are the basic together with lots of logics and commun sence
best of luck
Andre
I appreciate your comments. :-)
Scott
Very good, nothing to take against any of that, I might not agree or choose to follow but no problem with any of it at all. Long may it continue.
Cheers
Peter
Some fit, some don't and most "I do not know", but they are data points for me to ponder and glean from them what I may. :-)
Exactly! We're a mix that's for sure, as indeed is the impact of MG on each of us, medically, emotionally and no doubt a few other things as well, In that sense, this Forum is very much a Pick 'n' Mix, there's always a few black-current sweets in there somewhere and no doubt a few lemons!
Take care!