Reply To: Taking an Immune Suppressant?

January 4, 2017 at 3:30 am

I have had CIDP for over 5 years now. I am on IVIG and have been for 5 years. I am suppose to have treatments ever 3 weeks, but due to having Blue Cross of NC (OBAMA CARE) for the last 3 years of total kaos i have not been able to get my treatments paid for until I miss 1 2,3,or 4 then they will pay up.
The treatments are over 15,000 dollars and I refuse to get stuck with that bill. We are on a fixed income and its tough just paying for the insurance It is
classified as in office its just the copay. The last one has to go through 2 to 4 times before they approve a treatment that I have been getting for 5 yrs. They put me through continuous stress and so many hours daily on the phone. So, I have missed so many it’s like starting all over again each time.
I am on micophenulate. I started out about 1 year ago when the numbness and pain already in my feet and legs and started moving from half of my left arm and fingers. It had been on my left side for a while then it went to both my arms and into my lungs. I was having trouble breathing so I went to a respitory Dr. and he couldnt find anything. I couldn’t grasp hardly
anything. My neurologist then put me
on micophenulate 250 mg. twice a day. The problems went away except for legs, feet
and half of my left arm
and fingers. I then
joined the CIDP foundation and pursued a CIDP speciatist. The
closest one for me was
the University of
Virginia hospital. My
specialist increased the micophenulate to
2000 mg. a day. 4
pills in morning and 4
pills at night. I have
seen no improvement. She also ran a major
series of blood test to
rule out the rarest
forms of the disease.
also take a antiviral
2 times a day. The only
medicine that has
helped me the most is
Lyrica and I’m on 300
mg. 3 times a day. I
am in horrible pain al the time. The IVIG did
help for the first 2
years when I had an
insurance company that
was competent. I am now researching cdp. We will see how that goes.I try to get up
and do what I can but
I’m limited. I have long periods of twitches that happen every 3 or 4 seconds, and my hands shake all the time. Any one that has any of these symptoms I would love to communicate with you. The twitches come and go but no one can figure out why that’s happening. I hate taking all these medicines. I guess we all do. I am up to trying about anything. I feel that what is it going to hurt. I’m up for any clinical trial. We as a group just have to keep fighting to have quality of life.
There are some people that are doing thdse stem cell implants and having great luck with it. I’m sure there will be more there for us in the future.