cer100

Your Replies

  • December 28, 2017 at 1:07 am

    A different question – Have any of you had your level of Vit. B 12 tested and was it high?

    Just a CIDP DX, not anti MAG, but my B12 came back low and was put on 1000 mcg daily.

    December 12, 2017 at 9:10 pm

    I had both flu and pneumonia shots in the weeks before my sudden onset CIDP. No one will say either was the cause, just a possibility as I had also had a prolonged respiratory issue for the months before.

    December 7, 2017 at 8:53 pm

    Might also want to check their medical policies which are usually available on their web sites. I’d probably be less concerned with denial of pre existing conditions (didnt think they could do that any more as Jim wrote) than with coverage for using IG approved under different circumstances.

    BTW, in case you missed it CVS Health announced a $69 billion deal to buy Aetna

    December 7, 2017 at 8:47 pm

    Bruising is not uncommon for me but I find it varies from infusion to infusion depending. Depends on where the site is too. My hands seem to tend to bruise more but number of sticks, did the vein blow or roll, how well hydrated was I etc leaves the amount of bruising unpredictable. It might be barely noticeable if at all or it can be a big yellow+purple monster.

    Only time I have had post infusion site pain was when they hit a nerve once when inserting the catheter on first try.

    November 6, 2017 at 12:10 am

    Hydration has been stressed repeatedly to me with the IG TX. I’ve been told to do so the day before, day of and day after. Also not just H2O but include electrolytes. It seems to help with the headaches.

    November 4, 2017 at 8:37 pm

    My initial IG was also a 5 day TX. I tolerated well and no issues other than some headache. I saw considerable improvement by day 4. Everyone is different. Have also read some do better with some brands of IG than others. Did not feel worse afterward, but these days get kind of tired after infusions.

    Prednisone does nothing for me except nasty side effects.

    November 2, 2017 at 7:01 pm

    How is it determined if axonal damage has occurred?

    October 27, 2017 at 9:22 pm

    Best wishes for a rapid improvement for you. Many of the other PE posts have reported positive results.

    As I am close to scheduling PE treatment, this is NOT what I wanted to read! Did you have similar reactions to the previous PE treatments or just now with the 4th one?

    October 23, 2017 at 8:20 pm

    The most trauma was the placement of the catherer, and the constant pain from that placement

    Sorry to hear your first set was not successful. My neuro has suggested PE, but havent made a decision yet.

    Where did they do placement…a central line? Ive read some places do peripheral vein access now.

    October 23, 2017 at 8:15 pm

    hey guys.. uggg been in treatment for the cidp.. all morn/day ivg.. definitely not pleasent its painful.Im tired.People that had it after first day how did u feel?

    Guess everyone is different. I had no issues with IVIG and felt fine…just a little tired and took a nap. I could not describe it as painful.

    Best wishes to you in your TX.

    October 21, 2017 at 8:38 pm

    I think the use of IvIg for GBS and CIDP is “off label,” but it is nevertheless generally accepted

    At least for CIDP, I think IG is FDA approved, at least for some brands. As for insurance, you can appeal denial, but search their medical policies online for IG and CIDP. It was listed as allowable treatment in mine.

    .

    October 19, 2017 at 8:45 pm

    Ugh, ran out of edit time when fixing:

    exuipment = equipment

    Also wanted to add they can do periheral vein access and a central line is not necessarily required.

    Info for providers and patients

    http://www.terumobct.com/Public/306610077.pdf

    5 Myths

    http://www.terumobct.com/Public/306612141.pdf

    Literature review

    http://www.terumobct.com/Public/306611455.pdf

    October 19, 2017 at 8:36 pm

    Heres a couple of brochures on Plasma Exchange from the company that makes the exuipment. I found them informative.

    Info for providers and patients

    http://www.terumobct.com/Public/306610077.pdf

    http://www.terumobct.com/Public/306612141.pdf

    5 Myths

    http://www.terumobct.com/Public/306611455.pdf

    October 19, 2017 at 8:33 pm

    Barlow,

    How did your experience go? Very interested to hear about the process and if you had improvement?

    October 16, 2017 at 7:28 pm

    Thamks

    I’m stubbornly independent altho maybe not as much as when this started! 😉

    Agree the one medical supply catalog I saw was pretty pricey on products. I’ve started looking at arthritis aid products as they seem to fall into the same niche as what I need.

    As for my original tool request, I cut up a rubber gripper into a smaller size that goes in my pocket/wallet and for now until I decline more, I can get the water bottle twist off caps open.