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...
Hi Everyone,
I'm a 22 year old female and I was diagnosed with MG a few days ago. Currently a full time student at a University studying Respiratory Therapy (I know, very ironic lol).
My neurologist prescribed 30mg of Mestinon twice a day and 5 continuous days of IVIG foe beginning treatment. Along with an EMG and CT Scan.
Can anyone tell me the effects the IVIG had on them while recieving the infusions & after? How often do you go in for infusion? (Ex. every month or two).
Also, how did you all cope with the initial diagnosis?
All feedback is welcomed (:
Thank you so much in advance!
Being diagnosed with MG was a shock for me. I read everything I could find on it (especially at www.myasthenia.org -- the Myasthenia Foundation) and when it sunk in that I was likely to be in treatment the rest of my life (I was 65--males get MG at an older age generally), I was quite depressed.
However, after visiting for an hour with a neurologist specializing in MG, and being encouraged that I could be treated so I would live a mostly normal life, I got on with the treatment. My drugs were Prednisone and Mestinon. It took about 3-4 months on high doses of prednisone to get rid of the MG symptoms (mostly).
The side-effects of the medications are a problem at high doses, so we taper down to the lowest effective dose that keeps us functioning acceptably, and then try to maintain that indefinitely (meaning the rest of our lives for most of us). I was lucky and am currently in a 4-year remission without medicine. About 15% of us have remissions of varying lengths.
IVIG is sort of an emergency treatment because, for many folks, it gives very quick relief from symptoms. It does not treat the cause of MG, an immune system churning out bad antibodies, put it seems to pause it for a few weeks and does give rapid relief from symptoms while other longer term immune suppression drugs are being tried.
I was offered IVIG, but I didn't want to tie myself to having to go into the hospital every month for another treatment, and the approximately $20,000 per treatment cost overwhelmed my conservative nature even with insurance coverage. Insurance will cover the high cost mostly only for "emergency" type treatment at the start of MG or if we go into a "crisis" -- meaning breathing problems so bad we are at the ER.
IVIG is usually just a temporary fix while prednisone or other immune suppressing drug has to be taken to get real control. A few folks take IVIG ongoing as they have problems with the immune suppression drugs.
MG is thought to be related to thymus problems, so likely your neurologist will check to see if you have an abnormal one. If it is abnormal you will likely have it removed. If normal, you still may have the recommendation to have it removed, as research shows that may be helpful for younger folks (not a cure, but helpful).
MG can be a side effect of some cancers, so cancer checks are important.
The standard starting treatment after IVIG (blood additives) (or PLEX -- blood filtering) is usually prednisone with mestinon. Mestinon is a symptom treatment and does not treat the illness. It is very effective for symptom relief with some side effects that are annoying (diarrhea, stomach cramps, muscle cramps, sweating...), but it is so helpful we take it anyway and adjust for the side effects. There are other medications that are less troublesome than prednisone, but prednisone works the fastest. Often we start with prednisone, get control, then switch to something else for long-term control.
To live with MG does change our lives -- it is a chronic disease. We have to learn to adjust. I once described it as going through the stages of grief; denial, anger, bargaining, depression and acceptance. The good news is that treatment works for the vast majority of us, and we do get a good life, however a somewhat more complicated one.
By the way, this forum has been around for almost 10 years and all of it is searchable from a google site search. You type this line in your google browser (don't click on this link, but type it in) and you can find 1000s of discussions on just about anything you might want to know.
IVIG myasthenia site:www.dailystrength.org
That line in your browser brings up this search that you can click on
https://www.google.com/search?q=IVIG+myasthenia+site%3Awww.dailystrength.org&oq=IVIG+myasthenia+site%3Awww.dailystrength.org&aqs=chrome..69i57.2042j0j9&sourceid=chrome&ie=UTF-8
Finally, the most important part of the whole MG treatment situation is to get a neurologist who specializes in MG. They are rare, hard to get an appointment with, but MG is so rare and so specialized in treating, you really need one.
Good Luck
Russ
We're roughly on a similar timeline, though neither my age group or symptoms are typical. It is an adjustment, and I had the mixed 'advantage' of also being in healthcare. I would expect you'll find being in healthcare a bit of an advantage, especially if you experience breathing/swallowing issues especially. Knowing your body and understanding is a help.
I knew the likely diagnosis before I went to the doctor, but when my antibodies were negative, he listened, and still not only sent me to a neurologist, he chose one that it'd be faster to get in to see her. Even knowing, and understanding, it's a lot to wrap your head around. The biggest thing I can say right now is plan down time into your life. Rest helps. If you have eye symptoms, ice helps and find ways to use it - I was using it well before I was diagnosed just to get thru hectic days (staring at a screen). If that means I take my break in the bathroom with an ice pack to my forehead, I do it. Even newly on mestinon, on bad days I have an ice pack on during lunch, and afternoons are thankfully generally quieter. So its an adjustment. Be creative as needed. Make a list of questions as you go and any you still have by your next appointment, ask them. It sounds like your Neuro is on top of things so that's good, and I think this forum is a good resource too.
Take care :-)