Your Replies

  • September 26, 2019 at 11:11 pm

    I realize it works for some but at a local CIDP seminar a couple of tears ago, 2 of the core presnters said to not do stem cells…it can kill you.

    September 24, 2019 at 12:00 pm

    Since I cant get insurance to cover Rituxan, wondering if there is any new information on making progress with Ocrevus and CIDP?

    September 9, 2019 at 9:28 pm

    What is your insurance and how did you or your neurologist get them to approve rituximab for CIDP?

    September 4, 2019 at 12:29 am

    I think she would have benefitted from PLEX except that the physicians were afraid of lowering her already low blood pressure if they used PLEX.

    Ive had a few PlEx treatments, each 5 cycles. Only 1 of those cycles did my BP drop. It was really quick and pretty crazy if not scarey the symptoms I started having. But every one since BP has stayed OK.

    I’m probably due again soon and am researching ports. Have started getting infections more when using central line.

    September 4, 2019 at 12:20 am

    I am already taking the B12 1000mcg. Had a neuro suggest the alpha lipoic acid and had another neuromuscular spefialist say it would not help. Still considering but have not started it.

    August 29, 2019 at 9:20 pm

    Hate the steroids but cant get tapered off of them. IG isnt working well, PlEx they only want to do when I get really bad (and is 10 days in hospital)

    Prednisone: less patient with people, cant sleep at night, glaucoma, cataracts, some other blurry vision the docs attribute to it, type 2 diabetes, GI upset and a few others I am probably missing…what a nasty drug.

    Insurance wont approve the immunosuppressant they want to use to replace the steroids.

    August 29, 2019 at 9:07 pm

    Did you mean 1gm/kg? My IG isnt nearly as effective as it used to be.

    Ive had central lines for PlEx but after infections, I have been looking at ports. Trouble finding good answers to my questions even from local IR dept. Ive gathered there is one other port manufacturer I am researching beside BARD that is used for PlEx. Im not getting anything with exposed lumens. I also want a port I can use for other things like infusions. Will be following this thread.

    July 28, 2019 at 11:01 pm


    Where are you located and what insurance do you have? My neuro’s initial attempts at Rituxan he could not get approved by insurance for CIDP. Still working on it but it does not look good. I have such horrible side effects from the Prednisone.

    July 23, 2019 at 3:13 pm

    Agreed that Dr office may have input on plans that are more CIDP friendly.

    Insurance medical policies can vary greatly from plan to plan even though in the same state. Im talking more in terms of treatment coverage…ivig, ivig at home, plex, immunosuppressants, etc… than monthly premiums, copays and coinsurance which we know can differ greatly too.

    Between Drs office and plan medical policies which are usually posted online, hopefully you can make some good decisions.

    You dont mention Medicare but that can have an impact as well.

    July 23, 2019 at 2:57 pm

    Would suggest to research the bone strengthener. There are a couple of those that have had spontaneous very nasty side effects but unsure if that is disease specific.

    July 16, 2019 at 10:59 am

    They wanted to put me on Rituxan but insurance refuses to cover. We are exploring other immunosuppressants. Cellcept was mentioned but Imuran is also being considered.

    July 16, 2019 at 2:32 am

    Some have posted about their experience as a wonderful life saving event. However I was at a conference maybe 3 years ago and one of the speakers strongly warned about staying away from it. Perhaps things have changed in that time frame.

    July 16, 2019 at 2:28 am

    Interesting. Ive been on Prednisone 3+ years and last month had worst back pains ever, being put on muscle relaxer and pain meds and told to go to PT when I am better. However, the docs have me getting a bone density scan every 2 years to watch for changes.

    July 16, 2019 at 2:22 am

    My neuro suggested trying CBD oil (hemp based, <.3% THC) for my CIDP. They said about half of the patients with it have seen an improvement. The research just isnt there yet.

    July 16, 2019 at 2:18 am

    Agree with Bryan. Its time for a new doc. Check with the foundation.