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Jim-LA, yes, I know about Hopkins. I would be given an appointment sometime well into next year, long past the time when it would do me any good. It’s very, very difficult to get an appointment there.
JD — Sounds like you’re no better off than I am as far as “recovery” is concerned. I have discovered over the past three to four years that some people do not improve on any treatment. They either remain where they are or they get worse and end up in wheelchairs. I was pretty far gone by the time I was diagnosed, and the first EMG I had showed axonal damage and 80% loss of nerve function in my legs. My diagnosis was slow because in summer of 2015 I suffered major fractures in my pelvis.(My sacrum is now held together by a mess of screws and bolts.) I was told I would be “back to normal” in three months, but I never recovered. I believe the fractures and the surgery/anesthesia (which lasted half a day) triggered CIDP. I grew weaker, lost my balance, started falling, developed terrible nerve pains in my feet and legs. My doctors blamed all of it on the fractures and the nerve damage they caused in my pelvis. I didn’t believe that and began researching. I diagnosed myself, and demanded a referral to a neurologist. On my first visit — a year and a half after my fractures — the neuro said I had all the symptoms of CIDP. An EMG a few days later confirmed severe nerve dysfunction. I can’t even let myself wonder how much better off I would be if I’d been diagnosed earlier. It’s too distressing to think about. I was told it would take about three years to feel real improvement, but that has never happened. I’ve had several relapses in less than four years. My current neurologist, who is considered the best in the area, says I am not responding anymore to Gamunex. I start Privigen tomorrow. I think it’s too late for that simple change to help.
Jim-LA — I live in the Washington, DC metro area. I know that Johns Hopkins, 40 miles up the road in Baltimore, is one of the major research centers for CIDP.
I don’t know how my response went to email — sorry! I said that I have axonal damage as well as severe myelin damage. The doctors I’ve dealt with don’t seem optimistic about much improvement, and they say my age is a major factor. My IVIG has been gradually increased from 25 grams a week to 50 because I keep backsliding, becoming weaker. My balance is worse than it has ever been. My EMG now is pretty much the same as the first one I had in early 2017. I have had excellent doctors, but my body just doesn’t cooperate.
JD — I have never been hospitalized for treatment. I started IVIG (Gamunex) in March 2017 and have been receiving it weekly ever since.I’m envious of all you can do. I had lost 80% of the nerve function in both legs before I was finally diagnosed, and I haven’t regained any of it. The doctors tell me I’m too old for nerve regeneration and will have to be satisfied with staying as I am. But now I’m markedly worse. I can’t walk any distance at all without a walker or cane, and when I leave the house I’m always in a wheelchair. I have no balance and have suffered some bad falls. Now I seem to be losing what little mobility I had. I wish you the best with your regimen and hope you can continue to walk,drive,and use your bike.
Thanks so much for the responses. I’ve always known CIDP is a remitting/relapsing disease, but I’ve never really had a remission and relapsing is terrifying. My neurologist, who is considered one of the best in our area, got the idea that my worsening weakness and nerve pain, etc., was all due to my lower back problems, and for the better part of a year he’s done nothing to help me. Now I am so sick that he can’t deny that my CIDP has worsened. He thinks my body has gotten used to Gamunex and switching to Privigen might help. I start Privigen next week. I am in dreadful condition and feel as if I should be getting intensive treatment of some kind, but the doctor wants me to get Privigen once a week and wait a couple months to see if it helps. I feel like I’m back at square one and don’t know what to do.
BTW, I already had Hashimoto’s thyroiditis (from my teens), which is an autoimmune disorder, and I was born with a degree of immune deficiency that made me sick a lot as a kid (not bad enough to ever be life-threatening, but I had endless sinus infections that just wouldn’t go away, a common marker in immune deficient children), so I’m not really surprised I developed a major autoimmune disorder, CIDP, later in life.
I developed CIDP after having major hours-long surgery to put my fractured pelvis back together. I have seven very long screws across my sacrum, which had been shattered. I was told I would be back to normal in three months, but I never recovered. I grew weaker, lost my balance, became unable to walk without a walker or cane, then started using a wheelchair. I was diagnosed with CIDP eventually when I was so weak and so consumed by nerve pain that I couldn’t function. By the time I was diagnosed, a year after my surgery, an EMG showed I had lost 80% of the nerve function in my legs. The connection between my fractures and surgery and the onset of CIDP seems perfectly clear to me.
A search of messages here yielded only posts that are 10 to 12 years old.
This study from NIH also found that steroid use was not a major factor in osteoporosis in CIDP patients.
It’s the disease that causes bone loss, not the medication.
I have never taken steroids for CIDP. Only IVIG. Below is a quote from a 2018 report in the Neurology medical journal. This study found that CIDP patients who developed osteoporosis actually took LESS steroids. Steroids were apparently not a factor.
“CIDP patients with osteoporosis were older than those without and, interestingly, both cumulative prednisolone dose before the BMD measurement and average daily dose of oral prednisolone within 1 year from the measurement of BMD were significantly lower in osteoporotic patients than in non-osteoporotic patients. There was a significant inverse correlation between both BMD and T-score and the worst modified Rankin Scale score within 3 years of the BMD measurement. This emphasizes the importance of underlying disease process versus corticosteroid use as the most important risk factor for developing osteoporosis in CIDP.
This study highlights the importance of BMD studies and osteoporosis evaluation in the comprehensive evaluation of patients with CIDP.”
It’s the constant inflammation that affects the bones, according to the two endocrinologists I’ve seen. They told me that any severe chronic autoimmune inflammation can damage the bones. They advised me to continue Prolia injections and vitamin D3, exercise as much as I can, and be very careful about avoiding falls. They told me not to expect any improvement in bone density.
Finding the cause usually comes years before treatment options are developed and tested.
harryswope — I have a Bard port in my chest that is used for IVIG. (Nurses cannot deal with my veins.) A friend who has myasthenia gravis gets PE using the same kind of port. I don’t know yet if my neurologist will go for PE, but that’s the alternative he talked about. I can’t take oral steroids. IVIG is not improving my nerve function.