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 evening -
For the last year I have been treated with IVIGs - 3 consecutive days every 6 weeks.
In an email to my Neuro I have requested that my next IVIGs due on April 6th, 7th and 8th be pushed and maybe eliminated. The reason that I am considering this, is because they seem to have no effect on me. Most folks that have this treatment feel better soon after the treatments are administrated, and feel the need for it again 4 to 5 weeks after the IVIGs. We discussed this with my Neuro during our visit last month, and he seemed open to the change.
Any one out there that has been on maintenance IVIGs and discontinued it?
Scott
I did only one round of IVIG (5 infusions, having 1 every other day) when I was at my weakest and it really boosted me up for a month. From that point I just used mestinon until my treatment (cellcept) started to work. IVIG can be expensive. It is fairly safe, but there are risks of course. The hardest part for people with MG is finding that right medical cocktail to push this back so we can get on with our lives. Hopefully others can speak to their experiences with IVIg and routine maintenance.
TJ
because of my 12yrs and half, trails and errors, and my experiences thru the web of mg. i would like to make the comlite clarifications that need to be mde for every body understand the values of each component of treatment.
first i want to explain in my understand and communications with my neuro, reasrch and other, what each component means
a the beginning in the hospital i went trhu 5 days of plasmapherisis, to clean my blood of dead neuros.
this is the purpose of that terament nothing else ( cleaning the blood as dialysis does, period
the ivg's treatments are for the purpose of replinishing dead neuros in the blood, nothing else
i waited one year before beginning ivg's to see how my body would react to my new endeavour, but i would not have being able to do if it was not for the 2 drugs prescribed, mestidone and prednisone, period
they are others alternative but buyer beware of the pros and cons that can put your life in danger.
a proper way to combat the ups and down of mg, was to start the meds high and come down to the minimun as fast possble to allow the body to react to its own inmune system.
now on my 83yrs of age i can say that i ahve been able to master this very deciving desease, but also i like to mentione what i have followed to accomplish it.
1) total control of emation and stress a must if you dont want to end up back in the hospital.
2) control of exercise and activities, stop if you feel tired and take a breack if needed take a nap, it will works miracles
3) a total change in your food intake is necessary, no mgo's no read meat ect, lots of weggies, fruits, electrlites
best exercises are walking swimming light exersises, walking about 5miles dayli, split in 2 , 3 miles early morning 2 miles in the late afternoon
but that most importand remember the fuction of each treatment it is very important, you will be able to acertain control of your mg, and live a better lif
good luck
Andre.
- Nan
Skipping an IVIG treatment will likely tell you if it works or not. You can always have one later if you do find out that without them you feel worse. I would just make sure that the doctor understands you are not discontinuing them but lengthening the time between them They are difficult to get approved and so rather than stopping them, changing the time period likely will let you resume them if needed later.
With MG we do have to try changing meds and see what happens, but I never burned any bridges in doing that as I wanted to be able to restart meds or adjust the dosage if needed rather than do any cold turkey actions that required a new approval.
Good Luck
Russ
To clarify -
I have not discontinued these treatments permanently, only, increasing the time between them. My next treatment date has not yet been set.
I have been having these treatments for over a year and the last 2 or 3 treatments do not appear to have any effects on me. Typically, one might feel "worse" after the IG has been used by the body - usually 3 to 4 weeks after the treatment and feel "better" after the treatment has been given. For me, I do not feel "worse" before I get the treatment or "better" after the treatment is given for 3 or 4 weeks. My treatments have been 3 concurrent days every 8 weeks.
I feel confident that if I need to start them again I can contact my Neuro and start them again rapidly. I have been receiving IVIGs at the VA hospital here in Houston. They give these IVIG treatments every day of the week, every week.
I thank you for all of your comments.
Scott
Saw the Neuro today:
420 Mestinon per day - 180 at night.
Prednisdone 15mg/day for the next 3 months - morning.
Imuran - 150 mg/day - morning noon and night.
IVIG - Dosage based on weight - every 30 days.
I hate IVIGs and will do just about anything to NOT get them. Have not had an IVIG since Feb. of this year.
The Neuro convinced me and my bride that this IVIG is a necessary treatment, for me, so have changed from 3 concurrent days to one day every 30 days. The infusion day will be longer but only one day. We had wanted to try this 3 concurrent day plan every 8 weeks so we might be able to travel and not be tethered to this hospital/treatment center so often. Oh well -
Over all he feels that I am doing well. Less tremors, speech is better and he feels that I am more stable.
Our next meeting will be in 3 months. Treatment plan set until then.
Guess I haven't gone into remission yet. :-)
In the meantime, my challenge will be to make eating changes and get rid of some of the fat that I have acquired over the last number of months.
Scott
myabe i am to logical , but i cannot wonder as i see that you having more than needed problems with your mg.
as i mentioned before the fuction of each element of performance of ivg , plasmapheris (flex) and in your case the lock of plasmaphris (flex
getting all these ivg's with new neuros and having all the dead neuros in your system, maybe the cause of the hardship you going thru.
Nan mentoned getting flex repitetly and that has worked for her, i have had flex too at the begining to clean my body of old dead neuros and antibody ect, .
that could be a solution , as then you may be able to curb the ivg's use and able to get in the right path of control.
if i was you i would talk to my neuro in regard off alternatives, the concense of your position take me to suggest what i mentioned, and since you hate the needles. and beleive me you are not the only one. just think, for a minute the following
what happen in your body left with only accumuliation of dead material, and filling with new neuros???
i dont want you to think that i am telling you what to do, only to use logic and see the differences .as this is your body and only you can see and tyfeel what avenues you may have, since, things work differently with each of us.
also please talk to your neuro in regard of the inmuran as with the vaccine it may ceate some problems.
whish you the best and be safe
Andre
It's not so much that I am having "more than needed" problems. I am not sure the problems I have are needed.
When I suspended my IVIGs it was to determine if I really needed them. At this time, I guess I still do. He feels that the IVIGs helps to keep my MG in check and considers it as a valuable part of my "Treatment Plan". I am not ready to change Neuros today so I will follow his treatment plan.
We did discuss plasmapheresis treatments with my Neuro yesterday but he does not feel that it is necessary today. I will check with him about a one time treatment, whatever that means, and see what he thinks.
We also discussed the effects of the covid vaccine with respect to my treatments but suggests that I continue to use the mask and be careful around people, which I have been doing anyway. He stated that there is not enough data yet to determine if the vaccine is effective for folks that are taking Imuran, Prednisdone and other immunosuppressants. He supports the use of the vaccine - better with it than without it.
And as far as the weight goes - some should come off. Prednisdone has been a major influencer here as well as Covid and the fatigue from MG itself.
We are exploring a plant based eating plan. (We have tried Keto before I got MG. Worked ok for me but was not worth the effort for my beautiful bride of 47 years.) As you probably know, changing a carnivore into a herbivore is a big shift in thinking. And I must think before I act so we are reading, and trying to learn more about the needs of the body and not the needs of the mind. So our search will continue to find the "Perfect" eating plan for us. In the meantime we will try to be good and not eat so much stuff we shouldn't . :-)
Scott
1) If the food is in your house you are going to eat it. So be aware that if you bring home some pastries from the bakery or make yummy cookies, they will be eaten.
2) Don't stuff.
3) Cut up loads of washed raw vegetables (carrots, celery, zucchini, daikon radish, cauliflower), put in ziplock bags in the fridge, and munch on these. It will make you feel good about yourself.
4) My husband swears by not eating much at night.
Good luck and eat positive!
- Nan
Looks like we are moving to a Plant Based eating plan.
Guess I'll keep this current schedule. IVIGs every 30 days.
He feels that the Plex is not necessary at this time.
We shall see..
Thanks all for your comments.
Scott :-)