Nerve damage -from SOC?

[moahunter]

About 3 months post tx, I have been suffering over the last month with a mild rash on my hands, basically redness on finger tips, and burning feeling. After trying anti-fungal creams, and steroids, the thought is that it is nerve damage. Likely in my neck or spine (as both hands, would be too large an area of brain to cover both hands).

Has anyone else experienced this? Any thoughts on whether it is a SOC side effect, or not (given that I stopped SOC 3 months ago)? Chemotherapy is listed as a cause of peripheral nerve damage, this problem is also common with HIV patients, and diabetics.

At the end of the day, not a big deal in the big picture (I can where gloves when touching paper, etc), but a bit frustrating nonetheless.

[betscruise]

I have some of the same experiences as you. I stopped SOC at the end of December (non-responder). In mid-December, my hands started tingling and haven't stopped since. My tongue is also very sore as well. I've been bounced from specialist to specialist, and have found some thyroid issues, but my neurologist told me after an EMG nerve conduction test last Friday that I didn't have any nerve damage, and that it must be from anxiety. Yeah, right.
In the meantime, my Primary Care doc gave me a RX for Lyrica, which helped with the tingling, but gave me some unwanted side effects and the inurance wouldn't cover it. He then Rx'd Neurontin, which seems to work pretty well for me w/few side effects (and is on the insurance).

My neurologist was unaware/clueless of the HCV/Peripheral neuropathy connection.

[meki]

Tell me about the lyrica -- would you?

I'm debating on it for Fibro.

[jmjm530]

Not that post treatment symptons should be ignored, but it is possible to run yourself ragged going from specialist to specialist while your body's metabolism trys to make adjustments after many months on the treatment drugs.

"Betacruise" you say "My neurologist was unaware/clueless of the HCV/Peripheral neuropathy connection".

This is not surprising, and in fact I found many of the specialists I visited both during and after treatment often clueless in terms of the connection between the treatment drugs and what was going on with my body.

Realistically, if doctor visits seem required, sometimes the best you can do is have these specialists treat your symptons irrespective of the cause, because in the end that's probably what will be indicated anyway. If not, hopefully the body will make healing adjustments by itself in the months and sometimes years following treatment.
After two years following treatment, many of my post treatment side effects are much better but in terms of those that persist and require medical attention, I've since given up even mentioning my Hepatitis C treatment to specialists, because I've found it only gets in the way of any diagnosis given their lack of understanding or even willingness to learn/research the impact of the treatmetn drugs, as sad as that may sound.  

As far as the issue with your hands, have you seen a good dermatologist. Certain skin conditions flared by treatment can generate the kind of heat you talk about and can also be tied together with certain arthritic conditions.

-- Jim

[jmjm530]

In short, I guess what I'm trying to say is that with the hundreds of millions rightly being spent on a cure for Hepatitis C, doctor's know a lot more about how  to get rid of the virus then they do on how to get rid of the lingering problems many of us face from the treatment drugs themselves. Very little money and relatively very little interest shown in this regard by the established medical community.

Time, diet, exercise, lifestyle changes and perhaps alternative approaches may in the end offer more results than visits to the traditional specialists that many of us instictively seek out when our body is awry. This is not to say to completely jump ship medically, but to at least try and understand some of the limitations of that ship and to key an eye out for alternative ways to steam on ahead.

-- Jim

[meki]

"doctor's know a lot more about how  to get rid of the virus then they do on how to get rid of the lingering problems many of us face from the treatment drugs themselves."

Amen...

I mean seriously jim - my doc shoved me out the door - "you're cured" "see ya" "Life should be good"...

But I have lingering aches and pains that just shouldn't be there.

I'd almost believe they were in my mind --- if my mind wasn't as fun and as strong as it is. (I'm just a little biased about my own thinking... ROFLMAO!)

LOL!

Anyhow you're awesome.

I'd love to know about the Lyrica -- from someone who has taken it -- if anyone has tried it.

Meki

[GSDgirl]

try liquid malox & liquid childrens benadryl mixed even for the sore tounge.  swish & spit.  Works wonders for a while.      Denise

[moahunter]

Thanks Jim - as there was zero reaction to either steroids or anti fungals, my local doctor seemed quite confident it is not a dermtological issue, but rather is nerve damage, which is constricting blood flow at the finger tips. Accordingly, I have been referred to an internal medicine specialist - it will be interesting to see where it goes from there. I expect I will be doing the same nerve conductivity tests, as betscruise.

In the meantime I have been prescribed a low dose of a Tricychlic Antidepressant, which I understand is aimed at interfering nerve signals between brain and spine with a view to relieving pain.

[moahunter]

One more thing - I do have a history of athritis - being reactive arthritis (I have a tissue to that is linked to this - HLAB27), however, the doctors seem to think, based on the look of the symptoms, it is unlikely to be psoriasis, or a related disorder - hence the focus on nerves.

It is interesting how one drug treatment can lead to another issue, that leads to another issue... in that respect, I am sort of hoping to limit treatments as much as possible, at least until my status has settled down a bit more into normal, following treatment. The possibilty of nerve damage is a little concerning though, as I am not sure if much more can be done than treating the symptoms, unless there is an underlying cause (hopefully just residue of treatment).

[jmjm530]

Yes, psoriasis is one of the things I had in mind, but it seems like the lack of response to steroids might rule that out, although I'm far from an expert in that area. I do hope you find relief sooner than later, be it via medical intervention or  father time.

-- Jim

[jdwithhcv]

Realistically, if doctor visits seem required, sometimes the best you can do is have these specialists treat your symptons irrespective of the cause, because in the end that's probably what will be indicated anyway. If not, hopefully the body will make healing adjustments by itself in the months and sometimes years following treatment.
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Excellent advice.  I found the same was true with some of the aftereffects of cancer chemo.  Many will resolve on their own with time, to whatever extent they are going to.  Some are permanent and I must adjust to a new state of "normal".  But I'm alive and cancer free, so I won the war.  I expect my HCV outcome will be likewise, a victory but likely (yet again) a new assessment of what is normal for me in the aftermath.  Here's hoping father time looks kindly on us all - we deserve it.

jd