Your Replies

  • July 16, 2019 at 2:15 am

    ChicagoCIDP, may I ask which Neuro you are seeing?

    Good luck with the steroids. Ive been on it what seems like forever. Have now gotten diabetes, insomnia, glaucoma, GI upset, blurred vision, etc…a nasty drug that I cant get the Drs to get me off.

    July 16, 2019 at 2:07 am

    Im in the midwest USA and started hearing about the shortages this past month. Instead of a few large bottles, I got several small ones the last time. Otbers I talked with that seemed to be having more issues were using Gammagard

    July 16, 2019 at 2:01 am

    IVIG used to be very effective for me every 4 weeks. I’ve quit responding as well though and I get a huge dose every 2 weeks now. I still get some benefit for a short while but nothing near like it was the first year I was on it. Talking with neuro about an appropriate immunosuppresant that insurance will cover to see if it will help.

    May 2, 2019 at 3:23 pm

    Lori or JoMama, are you still participating on the forum as I see no posts for several years?

    Wondering if still on Rituxan and is it still working for you? Is insurance still covering?

    Im trying to get it approved but not making much, well any to be truthful, progress.

    May 2, 2019 at 3:08 pm

    Thanks Jim. Yes, I read my bcbs medical policies on Rituxan and CIDP and then I called going through them with my case manager but nothing was there.
    I know they want evidence based medicine but seems like potential cost savings to insurance vs 10 day PlEx every month. There is anecdotal evidence.
    Ill take a look at the post you linked and double check the IGG4 again.
    Neuro was suggesting maybe a different immunosuppressant but Ive also got a cancer I am dealing with and must be cautious with the suppressants.

    edit- I see she was previously on Rituxan with good results. That had to help her appeal.

    May 2, 2019 at 2:53 pm

    The top 3 afaik are

    IVIG…mine worked for about a year and then improvements severely declined. High dose now for little benefit.

    Steroids…helped a bit but dosage needed to be so high. Side effects pretty much too nasty to tolerate long term.

    Plasmapheresis aka PlasmaExchange aka TPE. 10 days in hospital, treatment every other day. Amount of improvement and frequency between is unpredictable. Risk of line infection which I got as well as a blood clot. Ive been 3 weeks and Ive been 5 months and in between. Hate the experience but its about all that keeps me going now. All 3 neurologists Ive had said hate doing it regularly for patient.

    Immuno suppressant like Rituxan IV has demonstrated some positive long term effects for some. Unfortunately it is not covered for CIDP under most medical policies and gets denied on appeals (going through this now)

    Good luck. Let us know what they suggest for you.

    February 9, 2019 at 6:42 pm

    For those with an implantable port being used for PE, were there other changes using it compared to using a temp central vascath line? e.g. does it take longer to do PE, etc. I dont want a port with external lumens.

    December 25, 2018 at 8:59 pm

    When it was an effective treatment for me and IVIG worked well, I would see positive changes begin in 3 to 7 days.

    December 25, 2018 at 6:34 pm

    interesting. Im back researching ports as my veins are pretty much shot and temp vascath for 10 days of PlEx has left me with infections a couple of times.

    September 12, 2018 at 4:14 pm

    Have been on Prednisone at different doseages over last 2 years. Still trying to get as much taper down as soon as possible. Id say I saw effects within the first week. Cant say with any confidence it has helped me…on the other hand round face, glaucoma not well controlled, high blood sugar/hA1C, difficulty sleeping, blurry vision, irritability/short temper, and probably a few more I have forgotten.

    September 11, 2018 at 12:46 pm

    My 2 PEs to date have been inpatient for 10 days. 5 treatments 1 every other day. About 60% of down days required transfusion due to affected clotting factors.

    As I am getting these every few months, did not have a port put in (yet anyway). IR put in a temporary Vascath which they removed on discharge day.

    Started at end of IVIG cycle and resumed IVIG soon after discharge

    June 21, 2018 at 10:14 am

    Dont have a port (yet) and still need to do research for differences, pros, cons, etc but IIRC, a Bard port was suggested to me by the technician during a PlEx treatment. Until then I had only heard of the Vortex.

    April 2, 2018 at 12:01 am

    Congrats!!! I so long for when I can get off the steroids. I was getting to the lower dosing and had a severe relapse a couple of months back and the Neuro bumped me up to 80mg from the 20 I was at. Now Im in a hold at 50 mg 🙁

    March 23, 2018 at 1:01 am

    At the GBS/CIDP regional conference I attended last fall, the panel all agreed one should stay away from SCT at this time.

    March 23, 2018 at 12:55 am

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