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...
Plans to be my new Immunosuppressant if I pass my labwork tomorrow. Dr says she has more success with this for people that do not get 100% benefit of IVIG. Any pros or cons? I was a bit distressed to learn it was filtered by the liver as that is the problem I had with the Imuran.
Another change is that I will be starting the timespan Mestinon at night. Keep me breathing ;).
I am going to continue on IVIG! Just new brand, pre treatment infusion, less IV steroids. I have to go back to Milwaukee tomorrow for IVIG, as they want me there until they see how I handle the new IVIG mix. I'll be home on Wednesday evening. I'll have my phone and Kindle.
Another change is that I will be starting the timespan Mestinon at night. Keep me breathing ;).
I am going to continue on IVIG! Just new brand, pre treatment infusion, less IV steroids. I have to go back to Milwaukee tomorrow for IVIG, as they want me there until they see how I handle the new IVIG mix. I'll be home on Wednesday evening. I'll have my phone and Kindle.
Mary T
I still think of Grayson's as your baby pictures, he looks so much like you. Big hugs to you both. b.
Isn't the kindle one of the best inventions?
Cathi
Wish you well with the new treatment program!
- Ross
(Can't help with Prograf. But sure interested in learning.)
I've been on Prograf since last June or July (I actually take tacrolimus, the generic?). It is also called FK506 if you want to look up some studies.
My liver counts are never tested. If you have liver disease, I'm sure they will closely monitor your liver function. We take a pretty low dose so hoping that won't be a problem with you.
They do test my kidney (renal) function by BUN and creatinine tests and so far, so good on that front. They also test my whole blood trough levels of tacrolimus to see how much is in my system 12 hours after last dose.
I honestly haven't had any side effects at all...maybe a slight hand tremor (which can be a side effect). My hand tremor goes away after my mestinon so I'm thinking it is actually a MG weakness. No stomach or other issues.
You should take it 1 hour away from food as fat decrease it's bioavailibility. No grapefruit juice (increases blood trough levels) Lots of drug interactions.
Of course, the same dangers of cancers, etc as other immune suppressants.
I still have to have plasmapheresis every 7-14 days so I'm not sure if the tacrolimus is working well enough for me. (I started at 3mg divided and now take 7mg total divided into 12 hour doses). My blood trough level is now 6.5 and still having symptoms.
Keeping my fingers crossed that Prograf and your new IVIG works well for you!
hugs,
sherry