IVIG Shortage
Thanks to everyone who recommended reading the tags on the IVIG bags. I just completed my third day of a 5 day course and my wife remembered the postings and had the nurse pull the tag. It was Carimune, 12g. When I asked about any shortage they didn’t seem to think there would be a problem here in Colorado Springs. I am currently on 250 mg Imuran, 50 mg prednisone, and now the IVIG. Both hands and feet are numb, just wonder how will I be able to tell if the disease progression has been stopped((BIG IF)). Is there some obvious indications or do I just rely on my neuro’s opinion? Probably a dumb question but have wanted to ask it since my treatment began. Thanks again for this great forum, it helps me maintain my sanity. Morr
IVIG Shortage
Just got off phone with my nurse at the VA. Relayed message from my Neuro that I could reduce my prednisone to 15mg per day from 20mg. She also told me that on Thursday I would be receiving Carrimune this time, not Panglobulin. Is this also a sucrose based product? Seem to recall it is. Can someone tell me where I can find info about it. Tried WedMD and Mayo Clinic sites, no luck.
Ron
IVIG Shortage
Ron,
Following this with a lot of interest as my neuro told me Friday that he will put me on IVIG after the first of the year. Have been on 60 mg Prednisone for the CIDP since July and 250 mg Imuran for Crohns Disease since 2000. (Didn’t stop the CIDP from developing though! ). Hope there isn’t a shortage here in Colorado Springs next month. I will use Medicare and Tricare for Life. By the way, is your Crohns service connected? Since we both seem to be afflicted with the same twin devils it would be interesting to compare notes. Anyway, good luck.
Morris
[email]bbealmer@msn.com[/email] n
IVIG Shortage
Saw Neuro at VA yesterday. After discussing with me events leading up to last Thursday when I had IVIG and the ensuing problems she did complete evaluation to see if I was having a relapse. She also did some bloodwork to rule out other problems. Received a call from her this AM. She had conferred with my Neuro at OSU and they decided to put me back on prednisone 20mg a day for a two week period. The thinking behind it was that I had arthroscopic surgery about 3 weeks ago, I appeared to have a slight flareup of my Chron’s Disease a few days before the infusion and also I had mentioned to the Nurse I felt cold that AM. Neither of them felt I was in need of hospitalization and a 4 day course of IVIG.
Ron
IVIG Shortage
A few weeks ago I posted here talkiing about a shortage of IVIG. Yesterday I went for my infusion and was told by the nurse that Gammunex was not going to be manufactured until late 2007 or possibly 2008. There are supposedly some problems with a government agency. I was given Panglobulin which has a sucrose base. It also took twice as long to infuse as Gammunex. I told the nurse I was feeling cold, especially from my waist down, so she gave me two more Tylenol and another Benydryl. About an hour later I told her that I felt just as bad so I was moved to the Observation Treatment Center for about 2 hours until Dr. cleared me to go home. Nurse was so concerned she called my Neuro and I have an appointment on Monday to have her check me out to make sure I am not relapsing. Has anyone used Panglobulin and had any problems with it? If you had problems let me know, since the VA will evaluate whether or not they will continue to use this product.
Ron