New to Gamunex
January 1, 2009 at 12:32 pm
After months of hassel with my insurance company, I got the approval to start Gamunex. Had my 200 gram loading dose on Christmas
Eve, 17 hours. For whatever reason doctor insisted it be done all at once instead of spreading it over several days. The new treatment protocal he is using is PE, followed by 500 mg IV solumedrol, then the day after PE, I get the maintance dosage of Gamunex, 200 grams. This is on a 21 day schedule. I will continue the 2000 mg of Cellcept daily also.
Having never taken Gamunex before, I am curious to know what side effects have been experienced and how long do they last? I was pretty well shot for about 4 days after the loading dose, but have bounced back somewhat yesterday and today. Did break out with a pretty bad rash around neck and on back yesterday. Also, how soon after the loading dose did you see improvement? Did you experience better endurance, more strength, better balance, etc?
Any input is appreciated. Happy New year to all. Thanks,
AnonymousJanuary 1, 2009 at 1:41 pm
Haven’t had Gamunex yet but am going to try to get my neurologist to let me try it. There is a great article in the Dec-Jan edition of IG Living (pg 20) about Gamunex being approved for CIDP treatment and the efforts of its maker, Talecris, to make it available to patients. The article references this site and [url]www.CIDPinfo[/url] as resouces and Estelle Benson of GBS/CIDP Foundation spoke highly of its approval as a CIDP treatment. Good luck and keep us informed.
Morris (CIDP – Sept 2005)
AnonymousJanuary 1, 2009 at 1:50 pm
I am on a 4 month trial of it (for insurance reasons). Tues was my 4th time and I broke out in intensely itchy hives (and I have no allergies from anything). A second dosing of benadryl dealt with the hives and itch. I keep on hoping I’ll see an incredible difference in improvement as others seem to see, but so far I am improving at the same rate as before I started on it (ie I don’t think it is helping me). Perhaps this last dose will do it for me…gotta keep the hope.
AnonymousJanuary 1, 2009 at 2:52 pm
Fred, I’ve been on Gamunex (65 mgs each day for two days in a row, every two weeks) for approximately six months. The first time I received Gamunex at that dosage, I broke out in hives and my lips began to swell. The hives and the swelling disappeared within 15 minutes after an IV injection of 125 mg of Solumedrol. Both symptoms have been easily controlled on subsequent infusions by pre-medicating with 125 mg of Solumedrol.
AnonymousJanuary 3, 2009 at 11:06 am
are pretty much like any other IVIG and the side effects/reactions.
Do a web search of ‘gammunex prescribing information’ and you have access to the ‘insert’ that we never see in most circumstances.
Key effects of any infusion are: 1-the rate being too fast = headaches; 2-flu-like symptoms -these are all over the map: achiness, either constipation or the opposite, or fevers; 3- rashes – already stated, but in my case a visit to my dermatologist for topical clobetasol or protopic [both steroid creams] did the job,[Rod is also right about solumedrol at times] and, at times; 4- nausea-eating lightly before and during infusions helps here…tho afterwards I get ravenous! There are a whole slew of other things that can happen, but deal with each s/e at a time. I know from my own experiences that docs don’t KNOW about the rash thing – I had an infusion nurse call the mfr about this issue and got that answer.
Calling the MFR’s 800 # is the fastest and easiest way to get answers. Really. Later then mention it to the doc, saying it’s on the prescribing info and leave it at that. Now if that rash were all over? That is possibly a more serious issue. I’d just had it on my hands, tho.
For me, and many others tho? Finding the right combo of pre-meds before infusion is the best defense. Work on that first?
As Morris has said, IG Living is a very good resource… you also find out that we aren’t the only ones dependent on IVIG! We are part of a far bigger world.
Hope this helps. I do hope things go easier in the future tho!
AnonymousJanuary 3, 2009 at 12:08 pm
WOW! That is some loading dose. I’m glad you finally got the insurance approval.
You might want to push your dr on doing the infusions over 3-5 days. Getting 200 grams of any brand of IVIG in 1 day is extremely dangerous – especially if it’s your first time! The reason it is given over a few days is to help minimize side effects and prevent stroke.
My advice would be to call your dr ASAP & let him/her know about your rash & feeling so badly after the infusion. Also you might want to take some Benadryl.
I’m also questioning your treatment regime. It seems like it *might* be too much for your body to handle in over a few days. That’s ALOT going on in such a short amount of time.
AnonymousJanuary 3, 2009 at 1:24 pm
I get well over 200ml each day for two consecutive days every 4 weeks. I’m not overweight nor am I super big nor tall. I’ve been getting my doses regularly for over 4 years now. The key to side effects has always been an alertness as to what is being done to you and controlling the infusion rates, for me.
The reactions are why folks are usually started in the hospital, after all. Some initial reactions can be really serious!
Actually my starting experiences were IN the neuro’s offices, it was later with infusions in the actual hospital that I had encountered problems – as the staff wasn’t adequately trained [tho they did many IG infusions for many conditions] as to reactions and proper responses! I complained and believe staff was ‘updated’ as to proper procedures. It is sites such as this and others that have educated me as to what to look out for as warning signs and what to do should something nasty occur. Information that I’d found a couple of years ago has ‘dissappeared’ tho.. I guess there are likely liability issues attached to us knowing more than we ‘should’?
As I’ve said, the pre-med route is usually the best prevention. Combinations of Benedryl, Tylenol and Solumedrol are the usuals. I’m currently on a seemingly boatload of benedryl pre-med. I’m asleep for the rest of the day! But, I’m grateful to get infusions at home? Driving home from the hospital on infusion and benedryl overload? Well, it was an adventure. Glad you weren’t there to see me driving under THAT influence! Try and explain THAT one in court. Fortunately? have not had to encounter a need to explain!
Good luck, just let your body tell you if it’s good, iffy or BAD! YOU will know!
Don’t give up? Maybe you’ve just got a lot of rampaging inflammation to overcome before you feel results. Stick it out and see.
January 3, 2009 at 3:03 pm
Thanks to all for your responses. I thought I had done my homework pretty well as I had an opportunity to speak with the patient advocate for the mfg. at the symposium and discussed with my doctor about 30 minutes several weeks prior to the loading dose. He even pulled up the mfg web page and reviewed it with me. He insisted that I do the infusions in the cardiac diagnostic unit at the local hospital because of prior heart issues, but I could not get him to yeid on the single day infusion. I did take the mfg info with me and made sure the nurses knew what to look for and that they had epinephrine at the ready, just in case. The fatigue is gone and my energy level has increased some, but don’t see any other signs of improvement yet. The maintance doses are going to be 100 grams, again given all at once, the day after PE and IV Solumedrol.
I had benadryl and 125 mg of solumedrol as premedications, and seemed perfectly fine during the infusion, but the magnitude of the rash caught me a little bit off guard. I took benadryl for three days with little effect, so I decided yesterday to “self medicate” a little and took 20 mg of oral prednisone last night and again this morning and am seeing improvement already. I’ll it to 10 mg tomorrow and Sunday and then stop. Hopefully it will be gone in two weeks when I do it all over.
Again thanks to all for your input. This is a great site for information and support. Optimism and positive outlook is always easier with support.
AnonymousJanuary 3, 2009 at 4:16 pm
While in the Hosp. I’d the opportunity to meet many in there with Multifocal Muscular Neuropathies. AND, they all were surprised to find a CIDP’er in their midst? Asking them about the effects tho, every single one of them agreed that they would keep infusions up! Even tho it mite give them the ‘sick as a dog’ and flu-like side effects, because they were able to FUNCTION the rest of the month!
That said? You never get to talk to those who quit. Nor ever find out why.
Each of us has to determine IF this is plain old WORTH IT ALL!
I don’t know about anyone else? But I went into this semi-educated, and became VERY much more educated than I ever thought I would have to be about the whole thing. I was educated enough to know that it might mean a commitment tho of time and money and some sacrifice to get and be infused on a regular basis. Given other medical issues, this was the only sane way to go in the long term. Tho expensive for all. It’s a gamble we all take in our choices of medical treatments and therapies. I sort of feel that I’ve won? At least a little?
It’s good that the Epi was on hand – it always should be! ALWAYS! And I too would be on personal RED ALERT! with such a rash. Do call your doc on Monday and relate ALL! ALL! Leave nothing out. To repeat again, there ARE preventative measures in terms of pre-meds that can be done to avoid this in the future. Now, it could be also that you have one whopping big bad immune issue that needs to be beaten down thru multiple whopping IG infusions and maybe other treatments. I for one? Despise those whopping things! But I understand their necessity at times.
I do have to ask tho…200 GRAMs or MG’s????? Honestly, we are talking the difference between pints and gallons here! While pints can seem like gallons at times? Not quite the same.
And AH…! You are also getting PE and Solumedrol… That could explain what’s gonna be a likely lower IVIG dose than for one not on the other things too.
Just hang in there for now? Fudge! What have you got to lose at this point? No? Hope always, and never be reluctant to ask questions! Someone has to have an answer somehow.
AnonymousJanuary 3, 2009 at 4:26 pm
Homeagain – Maybe you mis-typed but 200 ml is about 20 grams of IVIG. That’s what Emily gets at each infusion.
GaVol is getting 200 grams per infusion which, I think, would be 2000 ml’s per infusion.
So if you are getting 200 ml’s per infusion over 2 days then that’s 40 grams every 4 weeks. GaVol is getting 200 grams per day one time every 3 weeks combined with plasma exchange, steroids & Cellcept. That is a lot to put a body through for 2 days every 3 weeks.
AnonymousJanuary 3, 2009 at 8:51 pm
[quote=homeagain]I get well over 200ml each day for two consecutive days every 4 weeks. I’m not overweight nor am I super big nor tall. I’ve been getting my doses regularly for over 4 years now. The key to side effects has always been an alertness as to what is being done to you and controlling the infusion rates, for me. [/quote]
There’s a big difference between 200 gm and 200 ml. Most IVIg solutions are either 5% or 10%. I get 650 ml each day but, since the solution is 10%, I’m only getting 65 gm of IgG each day.
I’m astounded that any neurologist would give 200 gm of IgG in a single dose, even over a 17 hour period. Assuming that it was a 10% solution (2,000 ml), the infusion rate must have been around 120 ml/hr, which is not excessive, but it’s still a huge dose, especially for a first-time patient.
It’s probably a good thing that the Solumedrol was given before the loading dose. Otherwise, the rash and/or swelling could have been very serious.
Here’s an IVIg comparison chart, for those who may be interested.
January 4, 2009 at 6:19 pm
Rod, Homeagain and Kelly,
Thanks for the additional feedback. I just looked at a copy of my physician orders and it is a 200 gram loading dose. They gave me 10 bottles of the stuff! The follow-up doses will be cut in half, so I’ll get 100 grams on the 14th. I’ll do the PE and IV Solumedrol on the 12th. I thought it was a heavy dose for one day also. They started it at 80 ml/hr then bumped it up after each bottle until they got to 120 ml/hr. Nothing unusual ocurred during the infusion and I never had any reaction other than fatigue for several days, then the rash on day 5. I think the heavy dosage was to “shock” my imune system to see if there is any positive response as other treatments have been losing effectiveness the past 4-5 months.
When first diagnosed in ’96, I was on IVIG for about 3 months with no results and was swithced to PE for seveal months. I responded to that pretty well so it was stopped and I went on oral prednisone for about 2 years. Since then its been about everything else. Imuran, Cytoxin, pulse IV solumedrol, Rituxan, Cellcept, Avonex, and Tysabri. When Gamunex was approved and I found it was mfg slightly different than other IVIG products (glycine instead of sucrose) my doc and I felt it was worth a shot. In between these meds I have been on and off PE and IV Solumedrol since ’97.
Appreciate the good info from everyone. Thanks,
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