November 13, 2018 at 3:09 pm
This is very interesting. I never put the two together. I’ve been on Vesicare for a couple of years due to weak bladder. I was diagnosed with CIDP 12-2017, and have been receiving IVIG since 02-2018.
Just yesterday I went to my GP to see if there is anything stronger/better than Vesicare that seems to no longer be working. I have to go constantly. Guess I should discuss it with my Neurologist too.
BuzzJuly 4, 2018 at 4:26 pm
This joke doesn’t have to do with my CIDP, but it’s something I’ve enjoyed saying, and REALLY enjoyed watching peoples reactions, for about 20 years. Several years ago I had a Melanoma removed from my left upper chest, 3″ or so below the collar bone. It left a 2-1/2″ long x 1/2″ wide scar. When people have seen me shirtless, and have asked, I don’t go with the boring, Melanoma story. Instead I go for the heroic, tough guy approach…..”That? Awww, I got that in a bar fight”. Love to watch their faces when I add, “you shoulda seen the other guy”.
BuzzJuly 4, 2018 at 3:55 pm
Jim-LA, thank you for the links. They were very helpful to read. I have one question though….the testimonies from those who have tried it, for the most part, say the weekly or Bi-weekly seems to be the common dose. My Dr. mentioned “new technology where you take daily” shots. Question is, is he mistaken, or is this really “new”?
BuzzJuly 3, 2018 at 7:00 pm
Thanks for the help. I really did do a search using the search tool provided. Must have spelled SCig wrong 😉 nothing came up
BuzzMay 27, 2018 at 5:55 pm
See if you qualify for in-home treatment. If you do, they may be able to accommodate your work schedule better than an infusion center. I was diagnosed Dec 2017, Treatment is IVIG (Gammagard) for 5 days consecutively. I was working at the time and the pharmacy determined in-home would work for me. I only had to take a few hours off work late in the afternoon to get infused.
BuzzFebruary 20, 2018 at 2:02 pm
Thanks for the tip….no pun intended. My Dr has never had me do that, however, I am going to start doing it on my own to use as a gauge.
BuzzFebruary 19, 2018 at 2:46 pm
GH, thank you for the reply. “You should track your strength by some objective means”…..Do you have any ideas for me?
BuzzFebruary 11, 2018 at 3:51 pm
Thanks! This explains a lot. Saving the article to read latter. From the sounds of it, I may be doomed to a life of fatigue. I’ve have sleep apnea for 21 years (treated with CPAP sort of) and now diagnosed with CIDP 2 months ago. Still awaiting IGIV treatment. Still working too, but that will be coming to an end soon.
BuzzFebruary 10, 2018 at 12:46 pm
My nerve pain is not as bad as it was last fall, probably the high point pain wise. It has not been as bad since the steroid treatment in late December. The scary part is the weakness. I am growing weaker and weaker. I walk close to normal in the mornings, when I have the most energy, but by 2P or so, I describe my walking as, “like a caveman”. I slap my feet down very flat footed, rather than heal toe, heal toe. I am still working, I’m trying very hard to make it to April 30th when I will receive bonus for 2017.
Good news is, I was approved for IVIG today. It’s been seven weeks. I had to get involved with the insurance company and my Dr’s office to ask Dr’s office to send the needed clinical notes to the insurance co so they could make a determination. One would think the Dr’s staff would know this since he boasted about prescribing this close to 1000 times.
Does anyone know if I will be able to get off Lyrica (600MG/day) when I start the IVIG treatment?