Hello all. Saturday we went to the support group for myasthenia gravis and the care coordinator for my husband's doctor was there and gave a talk. Gail answered a lot of questions and she was a big help. I have not heard of the Musk Positive or Sero positive. I will check on it. Leona
Fitness Minutes: (30,358) Posts: 26,283 1/29/14 10:13 A
Good morning Leona. Sorry if this is late as I've been very busy. BTW my guide dog's name is Leone. :-) It's Italian for Lion.
There are different types of Myasthenia Gravis. For instance people can test normal and it not show up on blood tests that they ahve MG yet a Tensilon will prove it. Musk Positive patients can't have the IVIG treatment. I am Sero positive Achr therefor i can ahve it. If the IVIG suddenly doesn't help me I most likely will have Plasma pheresis.
I started out by taking mestinon tablets every 6 hours then dropped that and took Cellcept. So my only treatment is CellCept and IVIG every six weeks.
Friday was the final of 3 days of IVIG. Since they changed the percentage of the meds from 5% to 10% I go for less hours. The ML per hour is maxed at 300. On the first day of the 3 I have severe side effects that include severe chills, muscle pain, fever and headahce. Bottom line... flu like symptoms. It takes me for a loop. My Neurologist is wanting to not only premedicate me with tylenol and benedryl but also inject steroids in the iv prior to my first treatment. I'm not real familiar with steroids personally but i do hear it's an evil drug. If we have diabetes we msut be very careful.
Lin, They used a stick of lidocaine to numb it by sticking it in. That was the painful process then in goes the needle which I didn't feel. Once the vein has been broken into and blook flowing they isert a tubing and pull the needle out so the needle is only to start it. but the iV she started with my hand relaxed and fingers area bent downwards. So once it's all going i could not straighten my hand for 3 days. Ughhhhhhh.
They would start my drip at 50 ml/hr for 30 minutes then go to 100 after 30 minutes then 200 and bump it up to 300 after 30 minutes and 400 and keep it at that for the rest of the time until the bottles are empty.
Now different story: 40, 80, 160 and 300= NO side effects.
Do they use a butterfly or Jelco needle? A stick in the wrist or top of the hand burns and is painful.. NO fat there, the skin is thinner..
A Jelco needle is larger, allowing more fluid to be introduced at a time,, like blood donation..Usually they use butterfly for people with teensy veins or hard t o find ones. Butterfly needles are really small, have a set of green wings on either side of the needle,hence the name butterfly.
It is your time, slowing that IV down was a great idea..You are the one who suffers afterwards..
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Fitness Minutes: (30,358) Posts: 26,283 5/10/13 3:37 P
Yesterday I finished a round of IVIg. 3 days once a month for me. Literally... I ahd a bad stick this time and it appears this was my first problematic IV. Normally the IV's are on my upper arm anywhere between the wrist and below the elbow on top I mean lower arm. this one was on top of my hand and owwiieeeeeee. I was not able to type on my computer..Taking off the tape was not bad at all though because that is an area where i ahve very little hair. on my arm I have hair..
Last month they changed the concentration of the medicine from 5% up to 10%.Here is what I understand about this change. Less medication in volume. Smaller bottles. means less time than the 5% concentration. I'm done in under 3 hours. But it has caused side effects. headache, fever and chills. Nothing a little Tylenol won't help.
So... I have taken matters into my own hands and ordered the nurses to stop the ml/hr at 300 and not go up to 400 ml/hr. It does help.
I feel great today. I might add I ahve been totally MG symptom free for several months now.
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