Tim Miller
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June 17, 2019 at 11:48 am
I was diagnosed in 2016, I could not feel my legs below the knees. After three years, going on four, with Gammunex C, I can feel down to my ankles. My symptoms were not that noticeable because they were being masked by advanced degenerative disks that started 20 years ago when I was 40. I have lost all my disks in my lumbar and cervical (neck). In August of 2018, they rebuilt my back from under my shoulders all the way to the end of my spine. That isn’t that germane, except that I no longer have the masking and can now feel what the CIDP pain is. Mine comes after 12 hours of IVIG, and it is severe for three days, incapacitating. However, about five days out, I can look forward, generally, to four weeks of up time before I go it again. After almost four years of this, I am sick of being sick. However, the hope is, I can now feel my ankles, cold on my feet, where I could not feel anything below the knees before. Gammunex C, made by Griffols, is the only formulary my provider, the University of Colorado Health System, will use. I found out that there are many clinics that will use no other formulary, but it really depends on your insurance, as it is one of the more costly.
To the original question about how fast decline happens: GBS happens fast, but there is great hope there as it does not last after treatment (not saying it won’t come back). CIDP, however, can take years to become critical. I was critical, I had no pain, in fact, I had no sensation at all. I would estimate that took about two to three years to reach that level. I believe this is an individual thing, how fast, but those of you with rapid onset, if your Neurologist is saying CIDP, and won’t consider GBS, change providers. Same thing if they won’t use Gammunex C.
Just food for thought.
June 17, 2019 at 11:34 amMy 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.
