What did Intravenous Gamma Globulin (IVIg) do for my neuropathy symptoms long term?
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange.
Now beyond what I described above in my response of symptoms to gamma, over time other things began to happen. Sometimes there was bad news that was good news, as a pain or symptom would return or increase temporarily after an infusion and I soon learned this was just the damaged nerves with the help of gamma trying to work again! One patient wrote me that they had stopped the infusion as symptoms got worse! Mistake.
With the improvement of the overflow incontinence after about twelve months of IVIg infusions, the realization that something was happening occurred when the pain associated with this symptom returned. This would be the pain that sent me to have my prostate checked repeatedly, only to find everything normal. It seems that the nerve was waking up again. After all people in their 30’s and 40’s do not have over flow incontinence, do they? Now that I am 76 it is assumed this is the normal problem with aging! It was embarrassing to have to keep telling doctors this fact so I eventually stopped mentioning it. But with IVIg this eventually was followed by improvement in urinary control and a decrease in over flow accidents. Today after 12 years with the infusion every 21 days, this symptom has corrected to a 3 level from a 6 in regard to urinary accidents.
As for the digestive issues with alternating constipation and diarrhea, this corrected within six months of receiving the infusions and is currently not an issue except for some control issues with bowel movements that has me rushing to the bathroom. Not fun but it is what it is until it isn’t.
The silent tachycardia (did not feel the heart racing) and chest pains that often sent me to the hospital with a suggested heart attack, (nine times in the 1990’s), which I never had, have resolved with IVIg and once when infusion was delayed 43 days, these issues returned, but again resolved when the infusion was resumed. The cardiologist seemed amazed that IVIg stopped both the chest pains and the tachycardia and I am not sure he believed me, but do not care. Since then it has been explained to me that this is not a problem with the heart, but with the damaged nerves to the heart muscle that caused this silent tachycardia.
The electric shocks over my whole body and extremely sensitive painful skin to touch are all but gone with only sporadic minor events at the 1 to 2 level.
Today I am able to walk with the help of my walker, but when I walk too far my legs become numb and I must use the wheel chair. In 2004 the gamma helped me walk more but by 2015, it seems that more damage has been done and walking is now more difficult even with gamma.
Now here are some things the gamma has not fixed 12 years after starting the infusions:
Loss of stamina continues to be the worst symptom that I deal with daily and requires resting during the day. It does not matter if one sleeps or not, just resting helps even if for a few hours. The gamma does not seem to improve this symptom and the loss of stamina is worse for two days following the infusion. My body always feels heavy and numb. Dr. Scott Berman, MD mentions this symptom in his great book “Coping with Peripheral Neuropathy” as one of the worst things CIDP patients must deal with daily. I have heard this explain in this manner. The damaged nerves are trying with IVIg to do the work of the normal number of working nerves and muscles and so they play out almost like the muscles in a child that are not fully developed. Again, it is what it is until it isn’t. Folic Acid is sometimes prescribed for patients with chronic illness to help with such exhaustion, but I have no idea on how it works. Others reported that B12 shots help this loss of stamina which seems to be an issue in many chronic illnesses.
UPDATE ON FATIGUE (September 28, 2016):
Learned something else with my infusion yesterday. I got talked into getting 50 or 60 grams and could not figure out why I had such increase in fatigue, both physical and mental , when I was getting this dosage as they told me that was the dose for my weight. I forgot my line that ‘my body has not read your book” and discovered it was the excess IVIg! Yesterday I had my doctor reduce my dosage to the 40 grams which I was getting previously, and wow…. less fatigue etc…. even the day after. I have had the fatigue explained away in a number of ways, and fatigue is common in chronic illness, but then yesterday I read the brochure again that came from Gammagard. Guess what is NOW listed at top of the reactions? Fatigue and malaise!!!! I am considered going down to 30grams and see if that is even better. The point here is that each of our bodies are different an the brands of IVIg are different!
BRAND MATTERS: I learned a long time ago from IVIg Living Magazine, that brand does matter and that all brands are not equal. The most important issue with brand is that the manufacturers now know that if sucrose is used as a stabilizer, the chances of BAD reactions increase! The second discovery I have made is that you always want a brand that pre-bottles the product at 10% of product to liquid. Those that are mixed increase risks on several levels and those pre-bottled at 5% of product to liquid result in you getting more liquid for your body to deal with in the infusion.
Also I was talked into getting Gamunex 10% rather than Gammagard 10% which had worked for years. I have learned that Gamunex is better for helping with sensory nerves and Gammagard is better with help with motor nerves. This makes sense as Gamunex is approved for CIDP and Gammagard is approved for MMN. However, while my diagnosis is for CIDP, I think medical science is trying to split hairs here for the sake of the FDA and one needs to think which works better for you. Gammagard works better for me! Period.
END OF UPDATE:
Severe muscle cramps and electric shocks under the scapula’s come and went at the 6 to 2 levels until in 2010. I was referred to pain management and Dr. Seinfeld MD gave me injections into these muscles and this has been a blessing. These symptoms first occurred in 1970. I have no idea what Doc put in the medication, but the cramps that in 1970 brought me to my knees in a level 7 or 8 pain, making breathing very difficult, have been gone for over a year now.
Breathing difficulties continue with diagnosed sleep apnea, asthma, and COPD. Asthma symptoms are reduced by 99% with the gamma and breathing at night requires a BIPAP machine otherwise I stop breathing and wake up with severe headaches. The cardiologist said that such a problem will damage the right side of the heart over time and so he follows me to assure all is well. But since gamma treatments there have been no incident of difficulty speaking and breathing at the same time unless I fail to get the gamma on time!
The feeling that my body is heavy cardboard is the same and has never returned to normal except once in awhile I have a sensation of feeling in the skin in my legs. Having gone decades without diagnosis and treatment with IVIg, the damage to the motor, sensory, small and large fiber and autonomic nerves, along with damage to the axon (nerve) and myelin (covering of the nerve) has been confirmed as extensive by testing in 2014 at the University of Miami. What Dr. Latov states about early diagnosis and treatment for any neuropathy is absolutely true for me and well known.
The feeling that my muscles in my legs and hands are weak, a feeling which increased over the decades of failing to diagnose and treat continues, but to a lesser degree on gamma. I do have a little more strength in the legs as a result of gamma and this helps me walk a bit more than normally. Neurologists tell me that too many nerves have been damaged, but we can always hope for new growth and repair.
Now it was in 2005 after a hurricane when I attempted to climb stairs to see my doctor (elevator was out) that I discovered that an attempt to climb stairs will turn my legs into heavy numb cement as if the nerves quit working totally. This first occurred a few years earlier when in an emergency involving my grandson, I attempted to run to help him, only to have the legs turn to heavy cement and I fell down and could not move my legs for some time. Strangely if I rest and do not use my legs for several hours, this problem resolves to the normal weakness.
I adapt by using my arms to help pull myself up two or so steps but otherwise avoid any stairs.
The only way I can stand up after falling is to spread my legs wide apart front to back and use this leverage to stand. Neat trick I learned watching my dog that had problems with his legs. I now use a motorized scooter to go for longer walks with my dogs. Of course I am also motivated by my doggies who lick my face while I am on the floor in order to help me!
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PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician. These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions