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Hep C Discussion Forum -> General Discussion -> More on Peripheral Neuropathy
Post Info TOPIC: More on Peripheral Neuropathy
mallani


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RE: More on Peripheral Neuropathy
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Tig,

My personal issues are no longer relevant for patients using the DAA's. My joint and muscle problems after treatment were all related to Interferon and it took a year before these resolved.

The peripheral neuropathy was only noticed a few months after EOT. Initially there was numbness in my toes, only noticed lying in bed at night. This spread to involve my whole foot and lateral ankle and I was worried that my balance was being affected. It's been stable for the last year and I'm reassured I don't have any significant balance problems. As the Neurologist said, if you can stand on one foot with eyes closed for > 10 seconds without falling over, all is good. The sensory nerves are only part of the balance mechanism- the cerebellum, middle ear etc all play a part.

He also said nerves love to be used. He told me to walk along the beach barefoot, wriggling my toes in the sand. I'm doing plenty of that!

While it is tempting to blame the peripheral neuropathy on HepC, I'm not convinced.

The anaemia I suffered was all due to Ribavirin. Victrelis caused a more profound drop in Hb, and as you know, I spent 48 weeks with a Hb of 7 to 8. I was back to normal 3 months after EOT. Patients just on Riba with the new DAA's, shouldn't have such a big drop. A drop to 10 is now rare, and most only drop by 2-3 from the pre-treatment level.

As I didn't have any symptoms before treatment (despite cirrhosis) I really can't comment on any improvement after SVR. I never had 'brain fog' and my energy levels are the same. I'm just happy my risk of HCC is much lower and I probably won't die of liver failure, and I don't need a gastroscopy every year.  The 48 weeks of hell were worth it. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Thanks for the update and explanation Malcolm. I'm curious what your impression is regarding your own improvements going into year 3 since achieving SVR? Are your issues improving, staying the same or worsening? Seems we've had a number of members mentioning more and more symptoms of PN. Do you think there is a possible relationship between the newest treatments and an increase in these symptoms? The information seems limited to anectdotage thus far and it would be helpful if you could provide some opinion on the subject. There is a lot of interest on this topic lately and your impression is always valued.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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mallani


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Posts: 3398
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Hi all,

I did a post on peripheral neuropathy a few months back.

http://hepcfriends.activeboard.com/t60802131/peripheral-neuropathy-and-hepatitis-c/

Since then, I did have an EPP (plasma electrophoresis) and nerve conduction studies. They were both normal. In view of my cirrhosis I was a bit surprised at the EPP, as I expected some cryoglobulins.

I played golf with the Neurologist last Saturday and we had a further chat. Also since then, I discovered my younger brother also has 'numb feet'.

Essentially, most cases of peripheral neuropathy are due to vascular problems that seem to affect the blood supply to the sensory nerve sheaths, to the feet in particular. We lose the most distal nerve receptors, which causes the numbness, tingling and loss of spatial orientation. Pain is fairly uncommon. Motor nerve problems causing weakness, usually indicates a different process.

At my physical examination, I did the Romberg's test with no problems, and could stand on one foot with eyes closed for >10 seconds (without falling or swaying). I did have some loss of light touch and vibration sense in both feet, more so on the right, surprisingly. According to the Neurologist, anyone with a negative Romberg's just needs reassurance. Here's a link to Romberg's test:

https://en.wikipedia.org/wiki/Romberg's_test

So, I'm accepting my numb feet are here to stay. Whether they are due to HepC is unsure, but it doesn't matter.

If you think you have a peripheral neuropathy, check your Vit B12 levels, and make sure you are not diabetic. Consult a Neurologist for an expensive opinion. Cheers.

 



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
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