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...
Hello all. I have a question concerning the gammagard ivig infusion. I have been geting the ivig infusion for the past 3 and a half years on a monthly basis. I go each month for 5 days and get 50 ml each day for a week. Just recently I was told that there is a shortage of the gammagard. Has anyone else experienced this problem? Because of this shortage I had to extend my infusion from every four weeks to every six weeks. This is not good for me. Just recently my infustion center changed my 50 ml to 25ml without explanation and without notifying my doctor. Because of these two things I am looking for a new center. Am I overreacting? Thanks, Al
Good Luck
Russ
it seems to me has i went trhu similar thing in 2013 whencel my ivg with the onn insurance ca myly explanation "we dont pay for therapy meds"
it seems that 3 yrs. is to long, talk to your neuro, i was for one year at that time, and whent in relapse was for another year,
i dont beleive their is a shortage but that you have it for too long
best of luck andre
Sorry but after reading my response all was scrambled and lost, so i am making a correction for you to understand my writtings
in 2013 january after one year of being on ivg, the insurance company, decide to drop me and as a simple explanation i was told that they do not pay for theraputic meds, leaving me on the learch
i got into a big fight but to no aveil. after speacking with my neuro i found that they where cutting costs, so be it
when a went into relaspe in 2017 nov, i was put again on ivg, for about a year,
i can tell you teyr is no shortage of ivg, simply that the insurance wants to cut their costs and pardon my french, to hell with the patients.
unfortunatly as i have tried to go thru the courts, it is a lost battles,
speak with your neuro to see what he/she have to say, they have to give you an explanation.
also you can question the FDA and see what they have to say.
i reasonally beleive that 3 yrs, is realy to long for ivg,because me being generalise bulbar extreme mg patient with my worst relapse where my respiratory system was badly compromised, i yr was more that suficient, principaly if the dose was 70%,
unfortunatly you have to be a hawk in regard of your condition, and dont take nonsence says for thruth. fight for your rights.
also i dont know what kind of coverage you have, and you may need to have a close look at it because you may or not need to make some changes
again my appologies for the scrambled response
best of luck Andre
I was just hospitalized for myasthenic crisis.
I received four days instead of five days of gammagard 300 ml for precisely the shortage reason.
I am Canadian, and since myasthenic crisis is a recognized indication for IVIG, I am certain this is not a payment issue.
So I can attest to there being a shortage. I can not speak as to the indication of long term monthly infusions in your particular case.
Hope that helps!
Sonya