Neuropathy during treatment?

[hepcgirlfriend]

My boyfriend is undergoing treatment for type 2.  He is 12 weeks into treatment and has been experiencing pain, numbness, tingling, burning pain down his entire leg.   He's in terrible pain and I'm quite concerned.  He takes weekly 2 shots of interferon because of his size 6'3", 280 lbs (but now down to 262 lbs) and 1200 mg ribavirin daily. Has anyone had experienced this while in treatment?  Can his dosage be reduced?  He had undetectable levels at week 4.

[JadedWarrior]

That is insane. I am 6'2 and 210 g3.

Of course his dosage can be taken down. Why such the high dosage interferon does not discriminate weight.

MY OPINION but I am only 5 days into treatment.

[NashPred]

I agree with JadedWarrior.

Is he on Pegylated Interferon?

I thought the idea behind adding PEG to interferon was to keep it at a consistent level and thus eliminate the need for multiple weekly shots.

Neuropathy can be caused by treatment and I suspect that it would not be nearly as bad if he was only on 1 shot per week.

I’m only about to start wk 10 of tx so hopefully someone with more experience will chime in but if he is on 2 shots per week of PEG IFN that sounds high…or at least to me.

How many mcg are in each shot he takes?

[hepcgirlfriend]

thanks for the comments.  He is on pegylated interferon..the cutoff for one shot is 240 lbs when on weight based treatment plan.  I think each shot is 160 mcg..it's the full prepackaged syringe..I would have to look at it to be sure.  VA clinic prescribed at the least, one and a half shots but recommended the two shots.  He breezed through the first three weeks of treatment and since then has continuously gone down hill...tired, body aches, skin rash, eye and skin sensitivity to the sun, brain fog, irritable and now the leg pain which is the worse so far of his side effects and is making him absolutely miserable.  He's in hell every weekend after taking those shots.  He also hacks up mucous for an hour or two after he takes the ribavirin....he does smoke so I'm sure that contributes to that problem. He has his clinic visit this Friday and he's going to ask for a reduction or he will seriously considered discontinuing his treatment.  He's half way there since he has genotype 2 and treatment is only 24 weeks.

[FlGuy]

First, I'm pretty impressed that the VA would be that aggressive.  Second, since he reached undetected at week 4 and it's now week 12 a reduction in peg may not be a bad idea. What city is that VA hospital/clinic? And, what stage of fibrosis/cirrhosis is he?

[betscruise]

I got neuropathy during my treatment, and still have it 6 months later. My docs are pretty clueless about it, and have bounced me around from doc to doc, and of course, most of them don't know about HepC, let alone a connection w/HepC and neuropathy.
The one thing that has helped me keep my sanity is medication for the pain - as your boyfriend may tell you, ibuprofen/tylenol etc doesn't do a thing for this type of pain. Lyrica (heavily advertised on TV these days), or Neurontin (Gabapentin) may work to keep the neuropathy at bay. I'm still numb, but the pins-and-needles don't wake me up at night anymore, and I'm able to get through the day.
Good luck to him and you!

[hepcgirlfriend]

thank you both for your response.  His biopsy showed stage 1 and liver blood work has always been normal.  His VA is in Boston and FYI, the VA has a huge HepC initiative because veterans happen to be the largest subgroup of people infected with the virus.  Even though there  are thousands of vets with the virus it would be hard to prove it could be service connected.  He never used IV drugs but he was a sailor in the early 70's and went all over the world to all kinds of third world countries and has a bootleg tatoo, used other guys razors..anyhow he stopped trying to figure out where he got it.  I have been with him 20 years and I tested negative.

That scares me that you still have neuropathy six months later.  I don't dare tell him that right now, he would become depressed.  he does manual labor and needs his legs!  I go with him to his VA visits and I'll be sure to bring up the pain meds you recommended.  Do you need a prescription?  I myself had a  herniated disk and sciatica so I do know the kind of pain you are talking about...it's awful and debilitating.  It will be interesting to see if the VA is clueless like your doc.  I'll keep you posted and thanks again

[betscruise]

I also think there is some sort of Vet connection, although I've never been in the service, and probably have had this since the late 1970's.

The neuropathy thing scares me as well - and it does get very depressing when I stop to think that I may have to deal with this for a long time. Before tx I felt pretty good all the time, and didn't take any RX drugs, and now I'm angry that I'm left with this pain that I have to medicate about every 5 hours. It stinks.

Anyway, my primary care doc gave me a sample of Lyrica, which worked well for me, until I realized how uncoordinated it made my fingers (lthings like not being able to turn the page of a book), and I found out my health insurance wouldn't cover it.
So, he had me try the Neurontin, which actually works just as well for me w/o the sides. It's also one of the cheaper drugs on my health insurance, with only a $10 copay, so I can live with that.

I have found that in the last few days, I've finally been feeling a little better neuropathy-wise, and have been able to cut down my dosage, so I'm hopeful that it will continue to improve. From what I've read, the nerves can take a long time to heal/regenerate.

Good luck to your boyfriend - hopefully the meds will help him.

[hepcgirlfriend]

Are you still in treatment or are you 6 months post treatment?  Did you take the lyrica and neurotin during treatment?  You are right about nerves taking a long to heal...after my herniated disk, it took more than a year to get the feeling back in two of my toes and regain the normal use of my foot.

[jdwithhcv]

Lots of guys who served in the early 70's (many in southeast asia) were exposed to Hep C.  In those days the military did "gang innoculations" with one of those gun things like they used to use in school for TB patch tests.  They would swab each arm with alcohol but reused the gun for the whole group without changing needles or even an alcohol swab on the instrument itself.  I guess they were concerned about infections from bacteria on the skin but were clueless about bloodborne virus like Hep C, (which had not yet been isolated in those days.)

[IAmTheWalrus]

I get some of the same symptoms. There are bearable, though. I have not heard of someone being on 2 shots a week. That surprises me becasue Type 2 patients respond very well to standard treatment, and usually only need 24 weeks of it compared to the 48 or 72 weeks for Type 1's.

The Vet connection interests me also. It seems like a large number of vets that entered the service in the early 70's have HCV. I know the way the military did vacinations was a little suspect (air guns) and the Army personnel may not have been the most careful of medical personnel concerning hygiene, but the numbers still seem out of proportion.

I have heard a lot of stories about test vaccines, etc. but have never heard a really convincing explanation about this.

[merryBe]

yes, you can get PAD, (restless leg syndrome),autoimmune demeylinization, or diebetic induced neuropathy while on tx.
the thing is to discover which...you can control blood sugar, you can also settle nerves down some with calcium, proper lipids in the diet, and as mentioned above some Gaba receptor drugs