AnonymousNovember 16, 2006 at 6:16 am
Has anyone had any difficulty getting their IVIG? Until Monday, I had no poblem. Went for my infusion at Department of Veterans Affairs here in Columbus, OH. Was told by nurse that VA was having problems getting enough IVIG for its veterans saying the pharmacy told her that there was a national shortage. Three of us were to receive it, but our doctors were called to see how much our dose could be reduced so that we all could receive some. After about 2 1/2 hours we all got our infusions started. Mine was reduced by 5 grams. Nurse said that she did not know what brand they would be getting when I came in three weeks for my next infusion. She was really upset as we all are receiving Gamunex and are responding well.
AnonymousNovember 16, 2006 at 8:16 am
There are shortage issues, however I was always under the impression that we are considered a priority. While it is good to hear that you are getting at least some, I am sorry to hear that you are not getting your full prescribed dose. Also switching between brands can cause issues. Not sure what recourse you have but best of luck to you.
AnonymousNovember 16, 2006 at 9:18 am
Yes, there is a shortage. Our home infusion company has been sending bottles of IVIG that are only 5 grams & the nurse has to mix them, instead of sending out 1 bottle of 20 grams.
The nurse said that it’s happening with all of their patients and some patients even had to switch brands.
It’s my understanding that every 3-4 months the government distributes new batches. We must be getting close to the end of that last batch release.
My daughter got her first IVIG infusions last December & I’m told that they had didn’t have a problem getting it then. Maybe the government releases it in December?
Good luck to you. I hope you get your prescribed amount next time.
AnonymousNovember 16, 2006 at 1:31 pm
I didn’t hear anything about a shortage this time around. I just finished yesterday three days of Gamunex (195 grams total) at the U. of Colorado hospital in Denver. Two months ago they couldn’t get Gamunex and substituted Gamuguard. It had to be mixed and took 7 hours each day since it was 5% instead of the ready-mixed Gamunex at 10%
AnonymousDecember 8, 2006 at 12:14 pm
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.
AnonymousDecember 8, 2006 at 12:37 pm
Emily sometimes gets cold from her IVIG infusions. She takes Gammaguard. The homecare nurse told me that this is normal because it’s a blood product. We cover Emily up with 2-3 fleece blankets & she eats warm soup to help warm her up. Usually after about an hour or so she’s back to normal.
I’ve read that it’s normal to feel like you have the flu after getting a treatment because your body is reacting to the new antibodies. Make sure you are VERY hydrated. The nurse did a good thing by giving you more Benadryl & Tylenol.
It could just be that your body reacted because this new brand of IVIG is made differently than what you are used to.
Good luck & I hope you are feeling better now.
AnonymousDecember 8, 2006 at 6:53 pm
Im sure you will get other posts, but I do recall in older posts that some people do react badly to certain IVIG brands and should try sticking to the ones that dont give them problems. I think maybe Liz knows …… I’ll see if I can find any of those old posts.
AnonymousDecember 8, 2006 at 7:13 pm
..[url]http://www.gbs-cidp.org/forums/showthread.php?t=1001 cutand paste..
And from Jerimy …(back in June)
There is an IVIG shortage supposedly right now, we are considered priority patients. For me the brand Gammaguard works the best, I have tried several others including the ones you mentioned and they either didn’t work as well or I had a reaction. My Neuro said it’s good to find a brand that works well for us as the patient and stick with it, with Gammaguard I can get it at full rate, no headaches, no reactions, I just premed with Benadryl and Tylenol. The different companies prepare the IVIG differently so that is the main difference between them. I hope that helps.
from Brian in August
…….I did have some adverse reactions to the first two brands of IVIg that I took, but the third brand has been the charm. These adverse reactions included a fever and flu-like symptoms nearly every day for about six weeks. Because I am tolerating the new brand so well, I’ve been able to persuade my neurologist to scrap the steroid.
Those are a few I found.
AnonymousDecember 9, 2006 at 1:00 am
Seasons Greetings Everyone,
A caution about switching brands and manufacturers of IVIG.
A few years ago I discovered the hard way that I was allergic to Bayer’s brand of IVIG, after having been infused with it over 2 years. I had devoloped an allergy to it! Something in it triggered it. After testing, it was found that Baxter’s Gammagard (sp)? Was safe for me to use, where Bayer’s is fatal for me. I ask for the end flaps or other identification, to ensure of what I receiving. No physical details, I don’t take it. I am very clear on this.
So what I am trying to say is that be aware of what you are taking and be on alert of a possible reaction, and if you think that is the case, tell the tech’s and insist to see the Dr. and STOP the IV! It will save your life!
Just be aware of this situation, I’m not trying to scare anybody. Paul.
AnonymousDecember 9, 2006 at 1:44 am
I have found that certain IVIG brands cause side-effects. Just last week my dose was concentrated and I had the fewest after effects of the 18 months since treatment started. No migraines, nausea, less swelling, not sofa-ridden for days and I had more energy than before. WOW. Something as simple as less fluid made a vast difference-it was the tech not the nurses who discovered this.
Any time you feel strange during the infusion let the nursing staff know immediately. They can stop it and watch, medicate to help and most of all listen to what your body is saying. I get dizzy at first and not being a morning person close my eyes for a while.
Have kept every dose label since I started treatment in my journal-removed the bag stickers. Glad someone suggested to do this. Manufactor’s name/brand, tracking numbers and solution amounts. I write in comments on how I felt during infusions and the following days.
AnonymousDecember 9, 2006 at 10:41 pm
I just finished a five-day protocol of IVIG through a homehealth company. The neuro tried to get it through the local hospital first, but they could not provide it because of the shortage. I received 35 gm of Gammagard and was premedicated with 50mg of Benadryl and 650 mg. of Tylenol. I tolerated the treatment very well and now hope for improvement.
AnonymousDecember 12, 2006 at 4:21 pm
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.
AnonymousDecember 19, 2006 at 1:23 pm
There definately is a shortage. I just got out of the hospital after another relapse. I had to wait 4 days for the hospital to get the IVIG. I was given steroids while I waited for the IVIG and watched carefully. Luckily my breathing held steady while waiting.
Interesting thing, there were 3 other people in the same hospital with GBS/CIDP also waiting for the IVIG. I do not live in a large city. The neuro said that in the last 3 months he has had a huge increase in the amount of GBS cases. Also said there has been a huge increase in MS and ALS cases also. Coinsidence?
AnonymousDecember 19, 2006 at 1:32 pm
I know there has been a shortage for sometime. It is scary and sad. A friend of mine has told me she has been obtaining hers through ebay. I did not believe her, sure enough there it is. Gammagard Liquid 25 gms. I’m thinking of getting a couple of doses just so I can sleep at night.
Hope I was of help to someone
AnonymousDecember 19, 2006 at 9:42 pm
I find it hard to believe that Ebay would allow Gammagard to be sold on their site. It’s considered a prescription drug which is banned from being sold on their website. Besides were you going to infuse it yourself if you got some?
Edit: I do see where it’s listed now, it wont be listed long.
AnonymousDecember 19, 2006 at 10:15 pm
This is my humble opinion; however, I would never buy any medicine on Ebay. The medicine cannot possibly be regulated, and I would be suspicious that what you bought is totally what you want.
I was shocked to find it as well. The bid I found was extremely low considering what I am charged through the place I receive it through. The low price seems suspicious as well that it is what they say it is.
This is not to scare your friend or you MJD, but please be careful if you do buy it.
AnonymousDecember 20, 2006 at 2:44 pm
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.
AnonymousJanuary 16, 2007 at 5:43 pm
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.
AnonymousJanuary 16, 2007 at 9:20 pm
Here’s a link for a company that supplies medical facilities – at the bottom left side of the page is a link to a pdf file that lists the different brands of ivig and their properties (go to download page).
This page is updated every Monday. It can give you a good snapshot of ivig supply & pricing in the American Market as I believe they are one of the largest US suppliers.
Yes, Carimune has sugar – this is what my daughter receives – take care to premed, and watch that the infusion rate is not too high.
AnonymousJanuary 17, 2007 at 9:39 pm
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
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