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.

[merryBe]

well scrubing the whole tx isn't a good plan B. The thing is, while it's true that going beyond SOC dosages can increase chances of SVR it's also true that the drop out rate goes up in proortion to the higher doses. It's already at 30% dropouts, so higher dosing can really sabotage any chance with delicate people or those with other issues.

I already had neuropathy in my wrist and ulnar nerve, and at times now it would be nice to just cut the arms off at the elbows...you need to know your limits.
I have to not type too much..and I have to take small doses of pain meds.
Also I need a sleep aide due to the Riba.
Also my whole abdomen began to quiver months before tx, and still does...it is made worse by the tx....and is related to inflammation or anxiety...I think both.
In any case, I now take a .05 Ativan with each dose of Riba and can actually function and deal with people...whereas before, my nerves were so shot and theneuropathy pain so awful that I would lay quivering in a ball half the time.

In other words, there are meds he needs to be one while on tx..
If he doesn't get some help with the side effects of treatment it will be very hard for him to want to keep going.
I hope you get more help for him. Let me know how it turns out.
MB

[hepcgirlfriend]

it's getting crazy...yesterday he refused to take his night time dose of ribavarin and doesn't plan to take it at all today....says he wants some meds out of his system.  I can't get him to reason with himself.  The pain has taken on a life of it's own and right now he can't get past it.  thank God he has doc visit tomorrow.  i feel confident she will lower the dose, especially since he has lost 20+ lbs in the past 12 weeks, but if the neuropathy persists i think he will scrub the whole treatment.  then what?????

[Proactive]

"Why such the high dosage interferon does not discriminate weight."
Actually peginterferon "does" discriminate weight...This is the very reason Roche has ongoing ph iv clinical trials which are double dosing peg for those very large folks..My doc is involved with one of these studies...
trial discription
"Randomized, Multicenter, Double-Blinded, Phase IV Study Evaluating the Efficacy (as Measured by Sustained Virological Response) and Safety of 360 ug Induction Dosing of Pegasys in Combination with Higher Copegus Doses in Treatment-naive Patients with Chronic Hepatitis C Genotype 1 Virus Infection of High Viral Titer and Baseline Body Weight Greater than or Equal to 85 kg.

Interferon for subjects who are Genotype 1 and weigh more than 85 KG."

[merryBe]

sorry to hear about your fibro....it's fun...not...
the HGH has helped mine quite a lot..although the INF right now is starting to take a toll there....more hot spots...be glad when tx is over...
mb

[meki]

Oh and Lyrica was horrid for me -- it made me feel like I was crab walking sideways --- and totally ill.

[meki]

Just FYI - I'm a year and almost half post TX - and just now getting diagnosed with neuropathy --- but believe it is more like Fibromyalgia.

I thought I was dying.

They are working through meds that can balance me...

Right now I'm having the best relief with Tramadol - but am switching to ULTRAM --- which is an extended release Tramadol - cause I hate taking pills.

I will let you all know how it makes me feel

So far my hands are still stiff - and I still have the bubbling pins and needles up my legs... I didn't know what to call it before... But I knew it hurt...

I always felt like curling up in a ball...

But yeah - I think the TX and HCV actually causes it --- and yeah - I think it's permanent.

BUT --- on the BRIGHT SIDE --- the sooner you treat -- the sooner you get through the TX --- the chances are you're only going to feel pain --- but you're going to live.

And living is the most important part of life.

They make some very good medicines these days --- it's a pain to find the right one -- and it really stinks going to doctor to doctor to figure out what the heck is causing the pain.

You can't really figure it out.

But I will say - I think I've found a doctor who knows how to deal with it - I hope.

I know --- in my heart - that my doctors will figure it out.

And I have decided in my life - that a lotta pain ain't gonna kill me --- now that I know that it's all NERVE issues and not actually something killing me --- I can now go and live my life --- find the right dosages of medications to keep up a quality of living.

THERE IS HOPE.

Believe in it --- OK?

Meki

[betscruise]

"Are you still in treatment or are you 6 months post treatment?  Did you take the lyrica and neurotin during treatment? "

No, I'm not still on treatment. I did 12 weeks last fall and didn't respond. My peripheral neuropathy didn't rear its ugly head until about week 10, at which point I started going to my primary care doc and annyoing him to death. It got progressively worse for a few months, until I went and insisted on pain medication. So I didn't take the lyrica or neurontin until I was about 3 months post-tx.

Keep coming back to these boards - they're a life saver. I lurked on these boards during my treatment, and have only posted a few times, but the information and support here is invaluable. It's hard to find people in your day-to-day life who know anything about what you're going through as a patient or a spouse. Hang in there.

[hepcgirlfriend]

thanks to everyone for educating me, your advice is invaluable!

i have heard about the air gun theory and that is how he was vaccinated...you know the military will never officially admit to the connection, same as agent orange, but now strangely they have thousands of vets from that era infected, at least they are treating him for just about free. bf was in carribbean, south america, africa, middle east and asia. he did a lot of crazy stuff, ..so who knows where he got it.

Hoping this Friday they cut him down to one shot because he is just about ready to lose it and I'm becoming depressed dealing with it. i hope that doesn't sound selfish on my part, but it is hard to deal with the personality change from this tx and stay supportive.  I get snapped at a lot lately by my formerly calm and patient boyfriend! BUT, I know it's the meds.  This forum is my support group, thank you all, and I pass along the info to him...he's not very computer literate and has no interest in becoming so.  his driving reason to go into treatment was his fear of infecting me, although I understand there is a very slim chance of that happening if it hasn't happened in 20 years, and now seeing him suffer... I can't help but feel depressed.

I'm going to push the doc to look for anything else going on that might be causing the neuropathy, thanks for suggesting that and also get some good info on a proper diet to help control that miserable cough.

[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.
I'm hoping mine will go away when tx is over...but some damage occured before tx..so who knows.
the thing about Riba is it interupts the RNA/DNA and it seems to have more effect on some cells than others. Not just the virus, but our skin and our lung mucosa. I know I read somewhere in the research that it works on the same genetic area as what causes cystic fibrosis, the chemical signals that change how much mucus the lungs/throat make. That may be why so many get the riba cough.  It seems like everybody gets something. There are things they can give you to help with cough, and mucus production is regulated by diet as well as your cholesterol and lipid profile.
One thing to strongly also consider is to create an clean room for rest if his cough is bad.
Since while on tx our immune systems are compromised, the chances that things like carpet fibers, wool especially, dust, animal dander and the rest, may may it very hard for the body to not over-react by secreting too much mucus..as part of what it does it to try to protect itself from irritating particulate. When on chemo..that balance is whacked around..and sometimes histamine production goes haywire.

320 INF is very aggresive, I think he should take the one and a half AT Most, which was what the doctors recommended right? Even that is 30% higher than many at that weight are given.
MB

[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.

[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.)

[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.

[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]

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 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!

[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?

[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.

[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?

[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.