Hep C and peripheral neuropathy; is it CTS, and what treatments are there?

[Bird8]

Hi Everyone, I'm new here.  Suffering serious emotional strain as primary caregiver for my mother who is dying of breast cancer, single mother of Aspergers pre-teen, and self-employed as an artist/craftsperson(aka starving artist). I was diagnosed with hep C several years ago, and had been drinking heavily before the diagnosis, so my liver has mild to moderate damage/fibrosis. Last HCV RNA was a little over 6,000 - down from over one million. Accupuncture treatments weekly since January and herbal supplements (sporadically). 6 weeks ago while my mom was in the hospital I woke up with numbness in my arms and hands. Pretty soon I was awake all night every night with severe, debilitating pain in my hands. They are stiff, swollen, numb until several hours into the day.  Tingling is constant. Every day it gets worse. Splints for Carpal Tunnel seem to lessen the burning pain but the other symptoms, especially stiffness, are not affected by the splints. They make sleep difficult as well. Oxycodone helps but of course my doctor is reluctant to prescribe more than a few days worth. My Rheumatoid level(?) was high in blood test. Idon't understand the connections between Hep C and CTS, and RA. Is there a test for Cryoglobulinemia? Would cortisone injections help? are the recommendations for exercises and rest and the splints going to help me? Sorry I'm really getting hysterical, and need some support.

[MissMiss]

Just wanted you to know I really connected with your post.  I wish I could write that well.

How is your pain post tx?  How long have you been finished with tx?  Hope you are able to enjoy life now.

missmiss

[sfbaygirl]

I have never heard of it. I sure would like to know more... My doc told me to take Claritin for bone pain. I haven't had much of it lately and take it daily.

[twotells]

Lyrica (not sure of spelling) is for nerve pain, like neurontin, only newer and more expensive since a generic exists for neurontin (gabapentin) where Lyrica is brand only.  It's put out by the same company that makes neurontin.  My neurologist considered it, but didn't feel it offered much advantage over neurontin for me.
Dave

[susan400]

Has anyone heard of Lyrica? Or something like it?  My mom was given it for a chronic pain thing.  I don't know much about it.  Liver safety, etc.  Mom had suggested I ask about it for the bone/muscle pain.

Susan

[cuteus]

it almost seems like we need an advocacy group for those in chronic pain. how absurd that patients have to suffer because of the DEA needing to fill their work schedule with these 'criminal' doctors trying to make life bearable and functional for their patients.
There was a recent article in webmd magazine about pain management, I wanted to steal it from my dr's office but forgot, and the next time it was already stolen!
good luck in your quest

[mycoldfeet]

I have cryo and a 1a relapser doing the 72wk tx now. I had all the classics though, edema, rash, dots, blue or white toes depending on temp, numbness, pain, and since starting back on tx, no symptoms except a little numbness left on foot, and it's going away. My Gastro said the tx for cryo if the peg/riba didn't do it was about 10,000 dollars. That would have made Blue Cross mad.

[sfbaygirl]

I was just reading a thread below about someone having neuropathy due to Hep C. This sounds similar to what you are describing. I can imagine it would be hard to start with what is on your plate. What stage is your mother? Is she on tx? I will see if I can get the name of that thread below.

[sfbaygirl]

The thread below LTD, has some people discussing neuropathy.

[twotells]

I remain on Neurontin (Gabapentin) 1200/day, Kadian (slow release morphine)60mg/day, and oxycodone 20 mg/day.  I have serious residual pain and wouldn't want to be without this serious pain medication.  I go to a seperate pain specialist for this, though the Neurologist prescribes the Neurontin.  Believe me, I understand how devestating this pain can be.  Nerve pain can be debilitating.  My heart goes out to you,  Dave

[twotells]

The test for Cryoglobilinemia is the Cryocrit.  It is best done by a hematologist with an on-site lab or in a hospital setting because the sample must be properly handled (incubated).  Otherwise false negatives may occur.  Combo therapy for HCV often elimates the Cryo but not always and not for everyone.  A treatment called plasmapheresis filters out the cryoglobulins but doesn't take care of the cause (altered "B" cells spewing cryoglobulins).  Plasmapheresis also requires a surgically implanted shunt in the chest.  A new treatment called Rituxan (Rituximab) actually depletes the bad B-cells which is why they use it for Lymphoma.  Rituxan was chosen for me and approved under my pharmacy plan (whith a bit of wrangling back and forth by the Hematologist).  I believe that the Rituxan made a big difference for me- possibly making SVR much more likely.  I am approaching the 2yr post tx anniversary and SVR.

I wonder if anyone else here has been able to get a course of Rituxan.  I wish you the best,  Dave

[twotells]

I think the cost of a course of Rituxin was about $20,000, but I don't care how the insurer feels about that.  Somehow, my Hematologist/oncologist got it approved under my pharmacy plan.  I'm truly grateful.  Dave

[Bird8]

Don't even get me started on the pain management issue! Okay, well a little rant...I know the risks of physical and psychological dependence on narcotics like oxycodone, but I am an intelligent, educated person and I have had a lot of hard knocks, always coming out better in the end. I believe that if something works for me, enabling me to sleep a little and to be less traumatized by the idea of the pain, while I do everything else in my power to get well (accupuncture, alexander technique, doctors, wrist splints, rest, nsaids, exercise, etc.) then why should I have to suffer like this based on the idea that I may 'abuse' the privilege of being without pain!
Meanwhile, my mom's cancer has metastasized to the brain and spreading all over her torso, and in the lymphatic system. She insists on teaching (college professor) and living alone, although she shouldn't be and really can't function, so I travel an hour and a half back and forth constantly to look after her, leaving my son with my best friend/ partner.  My sister is pregnant and due in 5 wks. She lives 4 hours away.
The oncology nurse said on Thursday she thought they would discontinue treatment and I let her and the oncology staff know that I desperately need their help arranging more home care for her. I am so worried about the convergence of her transition into an end of life stage and my inability to care for her well because of pain, depression, and sleeplessness. Sorry this one's too long.

[sfbaygirl]

Your post is NOT too long. Talk as long as you need too! We are here to be supportive and you really need it right now. Your mom's situation sounds awful. My mom has breast cancer too that is now in her bones, but she is not going to die anytime soon. My dad passed away in March from a battle with cancer. The transition was swift and he spared us from being involved with any tx issues. He always said he wasn't in pain. I know he was. Luckily he had his wife to care for him. Hopefully some kind of home care is available to your mom. It sounds too soon for hospice.

The stress of all of this can make dealing with Hep C much worse and I know you are feeling it. Try and get some help with Mom and take care of yourself too. If you are having such awful pain (I have suffered with migraines and awful nerve pain my whole life) I know you can't handle much else.

I would definately get some diagnosis for this pain you are having. I couldn't even move at night with out crying in pain. Don't get me started on pain meds either. I just had a psych evaluator (for PTSD) give me a LONG lecture about taking fiorinal/codiene for years. He is not a treating dr. I had an ER doc tell me once that I wasn't doing enough for migraines (prevention before imitrex) and yelled at me for drug seeking after 4 days of non stop vomiting and pain, needing pain shot. Couldn't hold the pain meds down.  ON and on....My husband had an appeal defending a pain management dr, for giving meds. He had his licence taken after the pt. was going to different dr's. NOT his fault. Hope you have something for this pain, although I know from lots of experience that it is hard to tx nerve pain. Most pain meds don't even touch it. I hate the fact that dr's are so afraid to treat their patients instead of letting them suffer. I now have a great dr. who gives me what I need. They are really hard to find though. I lucked out and try not to make him "look bad".

The reason I asked about enzymes is b/c mine that are slightly elevated (before tx) jumped much higher when this joint/bone pain hit me. Sounds like you had a fairly recent biopsy. I would maybe ask for a cat scan of your liver. Also any other tests the dr. will give you to figure out what this is. Some people here have treated while having bone/joint pain before tx and it went away while on treatment. Tx is no picnic, but it may be better than the pain you are in now, if Hep c is the problem.

[Bird8]

Thanks for quick replies...I had to go look for my papers...had a biopsy in March '04.  I can't find the info right now but I'm pretty sure genotype 1b (or 1a, not 2) and treatment was definitely recommended, based on portal inflamation and piecemeal necrosis.  I believe it would be contraindicated for me because of side effects; I have a history of chronic depression.  My enzymes fluctuate a lot but never closer to normal than when I was diagnosed and stopped drinking. That said, I am generally strong these days and I am more inclined to treat as these symptoms complicate my situation, making it seem more immediate and ominous.  In any case, I have my mother to look after before I can consider 48 weeks of such a difficult process. I am not ruling out treatment, but I have a lot to get through before that can be considered. The pain is just scaring me silly.

[Bird8]

The last thing you said is an interesting take on the treatment decision. I had never thought to see it that way. I had a CT scan in March '05; a granuloma. They said not to worry - it was left over from inflammation in the liver. I am just about to turn 34 and I never thought I would be dealing with health issues like this. Carpal Tunnel Syndrome sounds like a blessing after thinking about the alternative explanations. I am going for x-ray and an MRI on my neck next week, because my accupuncturist thought I had some unusual stuff, saying something about c4 and c5, maybe nerve impingement from muscle spasm? I guess I am lucky that the nurse practitioner who sees me respects the opinion of my accupuncturist, and sometimes schedules tests accordingly. The specialists have much less time for me.
Thanks for you encouraging and kind support. I am going to go put this out of my mind for a little while - watch some dumb comedy. I'll let you know if I get any news.
Best Wishes.

[Morgaina]

This is the place to whine, we've all been there. My pain was bad through the pre-tx decades but was incredible with tx and the addition of procrit. It was worth every minute but my doc was also very liberal with T3's which really helped. There were nights I'd wake up with a scream and mornings I couldn't get my covers off without tears but it's funny how at that point it was just something to deal with. I was on a life saving project and nothing could have made me stop! Well, the doc did but only 2wks. short of my 24. Pain meds are invaluable, lots of times they are the element that can make or break success! Keep letting us know how you're doing, you have a lot to deal with and stress really seems to aggravate hepc. So let it out!!

[sfbaygirl]

You certainly do have your hands full...no pun intended! I taught some children with aspergers and they take a lot of attention. I was a single mom dealing with a kid with bipolar w/psychotic symptoms so I understand how hard it it. I also was a self employed artist, but luckily made some money.

Have you had a biopsy recently? Are your liver enzymes elevated now? I had an awful period of joint pain where my hands and joints were so painful I couldn't bend my fingers. They were also red and swollen, didn't know what it was. Found out I had Hep C. It went away after several months, thankfully! I also couldn't bend my knees the pain was so severe. RA and fibomyalgia are symptoms of Hep c. I don't know about CTS. Are you going to treat? I sure hope these symptoms go away soon!

[mycoldfeet]

Yes there is a test for cryo, and the cure is ridding the body of the virus, the rest I really don't know about the RA, and other aches, have you been on treatment before, what geno type?