I know the treatment options my Neurologist is going to suggest but have not met with him yet about them as he called me with the news just before heading out of town on vacation (3 weeks). This gave me time to research so I could talk intelligently with him when he gets back.
Here is my problem. He said he contacted my insurance company to get approval so that means to me he is looking at IGIV. That presents a problem for me as one of Jehovah's Witness it raises conscientious issues as does plasmapheresis. The other problem is that I am type 2 diabetic and have lymes so steroids are an issue also.
Without getting into a flaming discussion about my stand on blood can someone provide some direction for me to manage this disease.
I'm an IVIG patient and not super well versed on the subject of immuno suppressants medications but some people are able to manage their disease with them. Also there have been trials of forms of chemotherapy for CIDP patients.
I'm also a Jehovah's Witness! I was just recently diagnosed with CIDP but I had GBS in 2009 for which the treatment is IVIG or Plasmapheresis. I received 10 rounds of plasmapheresis with a non-blood alternative. So sorry I can't remember the name but as soon as I said I would not accept plasma they had the alternative so I think it's can't be that uncommon. I can't remember if it has blood fractions in it. Those don't bother my conscience and I told my Doctors that. I don't think the alternative has any but it's been so long ...... sorry I'm just not sure. But there Is an alternative for plasma out there and this was back in 2009 so there could be more than one by now. I hope you find an alternative that works for you and your conscience.
Hello! My name is Kelsey and I’m a Jehovah 's Witness as well. I have had over 30 treatments. I chose plasmapheresis with an albumin replacement. The albumin does contain blood fractions but it’s only 4%. Have you spoken with a brother from the liason committee? One came to the hospital with research on different treatments and broke down blood fractions and it helped immensely! If you have any questions or just wanna talk, please feel free to contact me! My email is ■■■■■■■■■■■■■■■■■■■