October 24, 2018 at 11:41 pm #116120
Last Wednesday, when I went to my infusion session, the hospital didn’t have my usual Privigen brand available and I was given Gammagard. IVIG is IVIG I thought.
And boy did I think wrong!
Since July, my CIDP has been acting up with combinations of numbness and weakness. At one point, earlier this year, I felt like I was at 90% of my old self and I was very happy.
Since July, it feels like I’m back at 75% or worse…
Anyway, at the end of the treatment with Gammagard, I felt wiped out.
At work the next day, I felt very weak and my legs felt like I was walking with two pirate peg legs as my legs. And both of my feet were numb and it was very hard to move my feet from the heel forward.
I ended up going home after a few hours and just sleeping for the rest of day.
One week later, I still feel the effects. I’m still wiped out, my feet still feel very stiff, I’m still a bit weak, I’m short of breath and I even lost my sense of taste to a great degree.
Looking back at previous posts, it is obvious that different brands can cause drastic side effects for different people.
I contacted my doctor and he’s looking into why brand was changed and he has ordered Privigen for the next round.
Also we chatted a bit about plasma exchange in combination with IVIG to see if we can’t improve things.
I’ll be honest, my reaction to the Gammagard has me bummed out. I’ve fought this flair up all summer. And then my IVIG had things even worse this week. Additionally, I’ve been on high doses of prednisone since July and the only thing that has done for me is to add 30 pounds. And of course, those 30 pounds don’t help the situation at all.
I’m at the point that Plasma Exchange looks to be an appealing alternative.October 25, 2018 at 4:22 pm #116121
If there is something about the Ig that you are allergic to, or makes you ill in some way, you could switch to the other treatment method of Plasma Exchange. But we can’t switch back and forth between PE and IVIg, they will cancel each other out. It would make more sense to do PE for maybe a week, rest several days, then follow with IVIg for a week. Insurance companies have different policies regarding justification for PE, although much of that is the same as for Ig products.
The other thing to consider is that maybe there is something in Gammagard that you don’t tolerate well. Maybe switching to another brand would make it more tolerable. Check with your doctor about that. Here is a comparison of the major brands:
http://primaryimmune.org/wp-content/uploads/2017/02/IVIG-Chart-2.2017.pdfJanuary 18, 2019 at 7:25 pm #116245
Hi Bryan. This is my first post ever. I had the opposite situation from you. I had been receiving Gammagard infusions for 18 months without problem. They had really helpd. Then, in December of 2018, my Infusion Center switched to Privigen. After a couple of days of infusions, I had a bad reaction. My muscles burned at night throughout my body and my joints ached. I felt terribe for a few weeks, feeling as though I hadn’t been infused at all. I battled with my insurance company, Infusion Center and product supplier to try to get Gammagard again, but was not successful. I decided to give Privigen one more try. My reaction the second time (January, 2019) was worse than the previous time. The burning and pain a night were extremely hard to tolerate and I barely got any sleep. I had to discontinue the infusions (I got 3 out of 5 and then stopped). So, I am someone who did well with Gammagard, but couldn’t tolerate Privigen.
One doctor noted that Gammagard is made with Glycine as the stabilizing agent, whereas Privigen is made with Proline. He thought my body might have had an adverse reaction to the Proline. This makes sense except that I think both are naturally occurring amino acids and both are in our bodies anyway.
I have been told that there is a shortage of Gammagard, but I am stuck in the middle of a battle between my insurance company, the product supplier and my Infusion Center.
Best wishes to you. JeffJanuary 31, 2019 at 7:16 pm #116267
I have not been on the site for a long time but good to see you still here. I am sorry the Gammagard did not work well for you. If you remember, we were diagnosed about the same time and I have been on Gammunex the entire 2+ years for my infusions. No added steroids. I have to say I am probably still very stable compared to others but I have had different reactions/symptoms over the last few months. More joint pain in the knees and some inflammation in my left forearm. I worry that the infusions may not be as effective after this long of a period but I still have some pretty good days and my neuro says I am doing great (I beg to differ some times :). Still taking Lyrica 3 times a day to control the nervy feeling mainly in feet and lower legs. Tried to cut back to 2 a day but those dang creepy crawlies were showing up again. While I have accepted my CIDP fate, I cant help but think of the good ’old days before all of this but I have a co-worker that at 49 years of age was diagnosed with stage 4 colon cancer so who am I to feel sorry for myself. I hope you at least are still able to play some golf.
Jim, good to see you are still on here helping so many with your knowledge. How are you doing? The last I remember you were on the Remuxitab (sp)?
Any insights into CBD oil for inflammation pain?
Jeff in HoustonMay 9, 2019 at 2:55 pm #116369
I am finding myself in the similar position as Jeff. …
Apparently with me it is just what the hospital Blood Bank has available !?! but the Privigen does not seem anywhere as effective (3± weeks) as the Gammagard (6± weeks) was.
I am seeing my doctor before my next infusion and will be asking what the difference is, if we have to adjust frequency or dosage to compensate if they must use the Privigen.May 27, 2019 at 10:08 pm #116387
Hi There- I am experiencing the same issues with my infusion center not able to get the Privigen, so my Neurologist approved me to get the Gammagard, after being delayed a week and a half. I just received it Thursday and Friday, and normally I feel more energy and less discomfort by my second day. Since Friday, I have been sleeping extensively, thrashing legs at night, and I too feel I have “Pirate-Peg legs”. Yes, it seems these fillers are all different. I called the makers of Privigen and there is no shortage “across the country” as my infusion center told me. I found out the distributor they use may be out?? Why?? Brian, I too go to an infusion center for Cancer patients, and you’re right ..we’re doing alright! I’ll keep in touch…had food sensitivity testing. I’m gluten free which helped a lot…I’m on mission to make more changes. I miss my other life!! Thanks for listening! 🙂 BarbJune 14, 2019 at 7:19 pm #116400
Hey Barb and Fellowcidpguy,
My symptoms flared up in July of 2018. As a result, my Neurologist at first upped my prednisone to 60mg a day. That really did nothing. So in September, he added 10ml to my biweekly IVIg treatment. That actually seemed to help.
But in February, I was still suffering from numbness in my forearms, hands, and calfs. I’m now taking 100ml treatments weekly and in early May, I started on Imuran in the hopes of getting off steroids.
Unfortunately, in late April I somehow fractured to vertebrae. The consensus is that the Prednisone had weakened my bones, thus causing my vertebrae to be easily broking.
I had so much pain from the vertebrae, I couldn’t really tell the difference between the broken bone and CIPD pain.
With my back now healing, I think I can report that the Imuran seems to be helping. Not sure of the efficacy of weekly IVIg treatments, but at least this week I feel better and the CIDP pain seems restricted from the ankles on down.
BryanJune 17, 2019 at 11:34 am #116401
My disclaimer up front is, I only use Gammunex C. I was diagnosed with severe CIDP in 2016. My Advanced Degenerative disk condition was going on for 17 years at that point, leaving me with no disks in my lumbar or cervical areas, low back and neck.
The symptoms of My CIDP were hidden and thought related to the structural condition. In 2017 I switched providers for my IVIG because I was yanked around as I see many of you relating. That provider changed me from Gamunex C to Gammagard, and several others every month “because” the manufacturer’s kept running out. BS, what was going on was they were buying what ever IG that was cheapest.
IF you have that problem, flee to another provider if you can. The horrors of that half a year will never be forgotten, at one point I couldn’t get off the couch to feed myself.
Once I was with a new provider, and able to start researching, I found out that switching a patient was the worse thing you could do if they were responding to one formula. Note here: No two formulas are exactly alike and act differently in the body.
I urge all CIDP folks to go to Gammunex C, but then, I am not a doctor. I found many hospitals and clinics will not use any other formulary because Gammunex C is the best for treating CIDP. Three years in, and my feeling down to my ankles has returned, it’s working. When I was diagnosed, I could not feel anything below the knees. Granted, other formularies may work better for you, or not. But I would urge you to seek out if this maybe your issues.
Because of my structural issues, now under 80% control, my pain seems to last 5-8 days after 12 hours of IVIG. Before, I couldn’t tell you which was which. After a back rebuild this last August, I can tell you now. My heart goes out to each of you, and my prayers. I know all too well we all suffer in different ways, but we all suffer from this heinous thing called CIDP. You are not alone.
Regardless, ask your provider what they think about Gammunex C, and if they are not a fan, call and talk to Griffols, the manufacturer of Gammunex C, and listen to their position. It may be time to get a better provider. Oh and the hospitals and clinics I called, were from various states.
I hope this helps even one of my fellow sufferers.
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