I have my results back from my sural nerve biopsy and confused as to number 2 on this list.
1) Mixed axonal degenerating and demyelinating neuropathy: Mild reduction in mylinated fibre numbers with local active axonal degeneration.
2) Evidence of demylination and remyelination but uncertain if primary or secondary.
3) No inflammation, vasculitis or amyloid.
The Neuro just said this confirmed CIDP and I did not look at results until I got home.
Neuro also said the results, along with CIDP not responding as she had hoped, and now Optic nerve atrophy she was going to go for more aggressive therapy i.e Plasma exchange, immunosuppressant to mix with my Octogam infusions.
Question; “Uncertain if primary or secondary” what does that mean? I have a second disease lurking?
I'm surprised the doctors did not use the sural nerve biopsy prior to any treatment,along with the EMG and results from a lumbar puncture,which with accompanying muscle weakness and peripheral neuropathy,clinches the deal for the CIDP diagnosis.I had all this done prior to IVIG starting.
I had almost the exact same sural biopsy results. I got it after not getting an accurate 'cause' for my CIDP after about 7 years. Not to give you anything else to think about, but as it turned out I had Lyme disease and had it for a really long time, which was causing the autoimmune issue and nerve issues. I had about half a dozen negative Lyme tests. In 2012 I went to see a new doctor that prescribed a new test made by advanced labs which was expensive and not covered by insurance. But I defintely felt better on the antibiotics - not entirely, but better. Im glad I got it because if I had gone the steroid, immunosupressant route I would have exacerbated the Lyme.
I had the lumbar puncture first which showed elevated protein confirming CIDP. Started on IViG with Prednisone. I responded quite well for about a year. 3 months after Lumbar, I had the EMG which showed nerve damage. I was told the sural nerve biopsy was another confirmation of CIDP and would be 'useful' in my treatment plan as I was now no longer responding as well to IViG and prednisone.
With all these results (over 2 years) and now optic atrophy Neuro tells me she has to get more 'aggressive' in my treatment.
I am new to this discussion and to CIPD. What is a 'more aggressive" treatment after IViG with Prednisone? I got cataracts soon after taking a round of Prednisone (for another condition) and then a torn muscle, 6 months later after another round of Prednisone, another torn muscle. I was told that the cataracts and the torn muscles were the result of the Prednisone.
The more aggressive treatment requires a blood test first to check:
The tests for thiopurine methyltransferase (TPMT) enzyme activity or its underlying genetics are measured in people who are about to start treatment with a thiopurine drug. One or the other of these tests is used to identify individuals at risk of developing severe side effects from thiopurine therapy.
People who have low enzyme activity have an increased risk of side effects, and those who are severely deficient are likely to experience serious side effects such as suppression of the bone marrow. When the bone marrow is suppressed, it is unable to produce sufficient numbers of red blood cells, white blood cells, and platelets. This may result in a significant drop in blood cell counts, leading to complications such as anemia, serious infections, and/or excessive bleeding. These complications may be life-threatening.
Thiopurines such as azathioprine, mercaptopurine, and thioguanine are drugs that are prescribed for diseases such as acute lymphoblastic leukemia (ALL), inflammatory bowel disease, and autoimmune disorders.
The drugs are an option with IVIG, however we are still exploring plasmaphersis. Also prenisone is off the list of options at this time *Neuro and I both hate it*
Munesse said:
I am new to this discussion and to CIPD. What is a 'more aggressive" treatment after IViG with Prednisone? I got cataracts soon after taking a round of Prednisone (for another condition) and then a torn muscle, 6 months later after another round of Prednisone, another torn muscle. I was told that the cataracts and the torn muscles were the result of the Prednisone.
I, too, never had a biopsy for my CIDP. My was confirmed with Spinal Tap and e,elated protein levels and all others symptoms of CIDP. Had a nerve test done with needles being stuck in legs and not feeling a thing. Also had no reflexes in arms or legs. Both are back now…after two years.
thanks Bob, for that info. really! I will archive it. You mentioned that prednisone is 'off the list of options" for you. Why? I mentioned the undesirable results for me (cataracts, torn muscles, and others) but... I took 50 mg today and within a couple of hours, all my symptoms were gone - weakness in my right leg that disallowed any weight on it, esp going up or down stairs, pain all over,like fibro, unable to stand up right (that's from spinal stenosis), neuropathy in extremities, wobbling and falling, foggy mentation, bizarre sensations in my hands, feet and legs, cramping in my legs and diaphram, numbness in my toes and feet (for many years) - all gone. I am afraid of very bad outcomes - like diabetes, which some posters have reported. How can I check that before it is critical. seems like physicians would monitor that when a patient is on prednisone for an extended time. thanks
Bob Button said:
The more aggressive treatment requires a blood test first to check:
The tests for thiopurine methyltransferase (TPMT) enzyme ....a Also prenisone is off the list of options at this time *Neuro and I both hate it*
Munesse said:
What is a 'more aggressive" treatment after IViG with Prednisone?
Both myself and Neuro hate the long term side effects of prednisone. She believes in the 'taper down' dose. for five days each month at IVIG time.
The long term side effects are not suitable for me at this time.
Cheers
Munesse said:
thanks Bob, for that info. really! I will archive it. You mentioned that prednisone is 'off the list of options" for you. Why? I mentioned the undesirable results for me (cataracts, torn muscles, and others) but... I took 50 mg today and within a couple of hours, all my symptoms were gone - weakness in my right leg that disallowed any weight on it, esp going up or down stairs, pain all over,like fibro, unable to stand up right (that's from spinal stenosis), neuropathy in extremities, wobbling and falling, foggy mentation, bizarre sensations in my hands, feet and legs, cramping in my legs and diaphram, numbness in my toes and feet (for many years) - all gone. I am afraid of very bad outcomes - like diabetes, which some posters have reported. How can I check that before it is critical. seems like physicians would monitor that when a patient is on prednisone for an extended time. thanks
Bob Button said:
The more aggressive treatment requires a blood test first to check:
The tests for thiopurine methyltransferase (TPMT) enzyme ....a Also prenisone is off the list of options at this time *Neuro and I both hate it*
Munesse said:
What is a 'more aggressive" treatment after IViG with Prednisone?
The long term side effects are not suitable for me at this time.
Bob, thanks again! I spent the last couple of hours researching the possible side effects and it's a pretty scary picture. some of those side effects I have already experienced. It's a hard call as I get such benefit from the prednisone! argghh. I feel normal for the first time in years.