Linda, the infusion itself went very well. No bad reactions and just slight headache. Hydrating before hand seemed to really help. However, when the IV was first put in my arm, I got very light-headed and passed out for a few minutes. My wife said she never seen someone turn gray like that. Needles and the like have never bothered me before so we figured it was just the built up stress and anxiety finally letting loose. After an EKG and blood pressure monitoring for an hour we went ahead with the infusion. I will now be doing IVIG once a week for 3 months.
How frightening. Glad all is well. I just don't understand what determines the course of treatment. Seems everyone's is different. I am to receive infusions 3 days a month for a year. I just have to trust that Neurologists know which treatment is best based on what I'm not sure. Good Luck.
My doctor went with IVIG because he said it seems to be the most effective for the most people. I can only keep my fingers crossed and prayers flowing. I’m still working but every day gets a little tougher. It’s crazy when everything that was second nature becomes a challenge. Good luck to you!
Yes, but as Reagan would have said, "Trust, but verify." I initially had IVIG every three weeks, and it was barely often enough. If IVIG seems to be working, but you lose strength between treatments, tell your doctor, and insist that you need it more often. As my doctor told me, "There is no test for whether or not you need another IVIG treatment. You are the test. If you lose strength, call and we will get you in immediately."
Linda Meyer said:
How frightening. Glad all is well. I just don't understand what determines the course of treatment. Seems everyone's is different. I am to receive infusions 3 days a month for a year. I just have to trust that Neurologists know which treatment is best based on what I'm not sure. Good Luck.
Getting IVIg “too frequently” also has it’s drawbacks and potentially serious side effects: kidney failure is among the scariest. Although the doseage and scheduling is all over the ballpark, the doseage is pretty much standardized TO BEGIN WITH at 1-2 per kilogram. Zeppellin is getting them weakly instead of groupings of 2-3 once a month. This seems a prudent start given her initial fear/anxiety. We have all been there and felt what a mixture of hope and fear felt like. Like Uncle Bill says: by all means trust your docs but keep on reading and reading. Then make sure to participate in your own care based on what you have learned. Good Luck!
Hi Zepplin. I started my IVIG treatments in October… Ive been receiving them every 3 weeks. Ive found it has significantly helped my sensation changes in my hands and feet and I am no longer falling. I DO Believe this treatment really helps!!! My neurologist is very positive this will maintain my function.
I do experience intermittent headaches, vertigo, and bilateral ear pain which Im not sure is due to treatments. Ususally lasting about 3 days at a time…
I was working full time… But now on diability since my diagnoses. I do get very tired. and seem to do worse the more I push myself. I am applying for permanent disability… but so far was not approved so I have an attorney now. My insurance covers the treatments up to 70%. But the max out of pocket is 5000 per individual… So I figure I will owe 5000 a year for myself if insurance doesnt change. I would call your insurance… as long as its approved…which it should be you have to look at your policy… I went for a second opinion with Dr Bird at Unn of Penn… To make sure good diagnosis by a CIDP center…
I also have hashimotos hypothroidism as well. My endocrinologist is sending me for a Cortrosyn stim test next week to make sure my adrenal gland is working properly… Ill keep you posted on my journey… Please let me know how you continue to do!!
Hi,
Has anyone read Terry Wahls' book and/or trying her diet. I would really like to hear people's thoughts on this.
Thanks!
Laurie
Geepster said:
Getting IVIg "too frequently" also has it's drawbacks and potentially serious side effects: kidney failure is among the scariest. Although the doseage and scheduling is all over the ballpark, the doseage is pretty much standardized TO BEGIN WITH at 1-2 per kilogram. Zeppellin is getting them weakly instead of groupings of 2-3 once a month. This seems a prudent start given her initial fear/anxiety. We have all been there and felt what a mixture of hope and fear felt like. Like Uncle Bill says: by all means trust your docs but keep on reading and reading. Then make sure to participate in your own care based on what you have learned. Good Luck!