Lori222
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January 10, 2011 at 10:09 pm
I hope you get in for the SCT. was it a long process to even be considered? How obvious was it for you when the ivig stopped working? The ivig has kept me from getting worse–I dont really feel ive ever had enough to actually “get better” on it though. i have an upcoming appt and am going over the podcast info with my neuro to see if she will follow those recommendations with me. If I dont see a change with that–then id really like to start the sct process. It does sound like a grueling process but if it will end the cidp then would be worth it. Keep me posted—I will be waiting to hear if you get in—best wishes Lori
January 10, 2011 at 9:57 pmSounds like we have a lot of the same ?s on the sct. My neuro hs never suggested anything else other than the ivig either. I did try prednisone (at my own request) it made my cidp worse. I was thinking the same thing–about the sct–if you get chemo with it anyway why bother with the chemo first? Why not just go big and get it done!!! I’d like to think of it as “curing ” the cidp though—if I do not have to continue with IVIG , it kills the bad antibodies, and the nerves heal–then it sounds cured to me. Do most people with cidp know what the antibody is? I would think if they have a measurable antibody and they know the starting % or amount that chemo could be done to the point of that bad antibody being eliminated and not have to knock out the whole immune system? After my next neuro appt in Feb. I think I will call on the sct procedure too….the most they can do is say Im not a candidate for it—but at least i will know. Lori
January 5, 2011 at 6:46 pmoh you’ll smell it !!lol I had to cut back to 1200 instead of the 1600. Started feeling a little light headed (Im not diabetic)–I happened to be at work where i had access to a glucometer checked my blood sugar and it was only 37, so figured I should cut back on the ala since it decreases blood sugar. anyway cutting back on the ala made the urine odor go away–so either my body is just more used to it, or its the lower dose. Lori
January 4, 2011 at 8:50 pmSince cidp is a disease of the nerves couldn’t it just as well be that and not the ivig? Had you had previous infusions without the eye issues. are you diabetic? I think this cidp takes over my health thoughts so much, I sometimes forget a headache could be just a headache and not related to ivig or cidp. Either way its your eyes they are extremely important so definitely get to the bottom of it and figure out what is causing it—-Best wishes Lori
January 2, 2011 at 9:09 amI’ll be sure to write 0.4 on my note to neuro—im not good with that medical math either –but im pretty sure theres a big difference with 4 and 0.4 when you’re talking per lb or kg LOL—thanks for listening to it again. I think im going to listen to it one more time before discussing it with my dr–Lori
January 1, 2011 at 2:26 pmThat was a great podcast—thank you so much for sharing it. I am going to see if i can get my neuro to listen to it—any good neuro should be thankful to us for sharing it with them. I hope she will follow the advice of the 4 verses 2 gm per kg and the more frequent dosing–in my case listening to the protocal– probably every 2 weeks. once again great info!!!! for us google fanatics–can just google”Dr Dycks cidp podcast” and it will bring you right there too. Lori
January 1, 2011 at 2:19 pmI am happy to hear of your good news. I have been following your posts since starting my own journey with this crappy disease. They are always very inspiring, gave me hope at my low points, and many good articles to research on my sleepless pred. nights. I wish you the best of luck—-the one thing with cidp is it makes us stronger and more determined—you made it through all that–so you will do great. I hope you still find time to keep posting–your knowledge and insight into the questions on this board are very helpful. Lori
December 24, 2010 at 11:13 amgamunex 130gm— 2 days of 65 gms ea. day. 4 hours, done at the the hosp infusion ctr.—-15k.–. Hosp settles for this as it is anthems cap for this procedure.
-I dont know about you all–but for me new year–new deductable to meet : ( I never really paid much attention to health ins up until i got cidp–other than an annual physical i never used it. Now that Im forced to use it, I realize how much insurance co’s have to pay and deal with. What a lot of us dont realize for every one of us depending on them to keep our quality of life as good as we can with procedures we NEED…are the people on mainecare who are running to the ER at every little cough, sneeze, ache or pain because they can—because it does not cost them one cent.
I dont know about everywhere but–mainecare is very abused in my state which then forces the insurance companys to pay more to pick up for the low cost of mainecare reimbursement to the hosp’s–then eventually trickles down to us–the people who are buying insurance. Its a sad system and even more so that nobody can come up with a solution to the problem. LoriDecember 22, 2010 at 1:44 pmso what is the deciding factor to whether one gets gamunex or gammagard? Is there a huge difference between the two? Lori
December 21, 2010 at 7:16 pmNot sure why if there is no such thing as generic ivig—but the label on mine always reads Gamunex only –no generic equivalent. I will ask the nurse at the infusion center next time why it says this and if it doesnt state this, might something different be used?? I somehow always seem end up in the chair directly cross from the ivig pharmacist–maybe i can see what info he has on it. Lori
December 21, 2010 at 7:06 pmFrom reading clinical trials for ala—they are using doses of 1200 in one and 1800 in another broken down to 3x daily (neither trial i found had posted results yet—some never post their results : ( I started a few weeks ago and have worked up to 1800–thats where i’ll stay (600 3x daily) and have noticed a reduction in feet numbness–I have never had any pain, so no comment there. The trials stated 3 months to see full benefits. Lori
December 19, 2010 at 8:37 pmdid the dr rx just any otc ALA or a special brand ? I got some right at wal*mart and started it a few weeks ago.—–personal question—is it normal for urine to have a strange smell while on high doses of ala Lori
December 18, 2010 at 6:20 pmRoland–I have not been on any type of chemo medication or infusions personally—so, this is only out of what Ive read in articles or others posts–I’m not even sure if its for every type of chemo treatments or just certain ones—but I do remember reading 6 months—6 months to determine if the chemo was doing anything. i think someone on this board had posted this time frame for themselves too. Sorry i didnt bookmark any of it—it was during one of my many late night readings while on the prednisone. Lori
December 13, 2010 at 9:56 pmthanks–I will check that site out–am always interested in exercises that will help. I can still do my regular exercises with free weights for body parts not affected–but its hard to find exercises that are so weak from the cidp to do. I , too heard of the supplements you mentioned as being good for muscle fatigue- I have been taking the c0q10– a type with extra mitichondrial support and i feel it has helped me. Lori
December 11, 2010 at 5:04 pmGreat photo : ) Hope everyone here has a wonderful Holiday season. Lori
