Neuropathy

[newleaf09]

Searched the threads and could not find the posts about tingling hands or feet.  Has anyone else developed neuropathy (nerve damage to hands & feet)?  Does it go away or are you stuck with permanant nerve damage?  Any positive experiences out there?

[moahunter]

I have neuropathy in my finger tips. It feels like burning - especially if I touch a lot of paper. I wear some cotton gloves now, when I have to do a lot of that (my office is paperless, so not a big deal). It comes and goes a bit - worse if my hands are cold. Defnt. a side effect of treatment - for me, not a big deal though.

[newleaf09]

Frank,what you are describing sounds like the result of unsuccessful laser eye surgery.  I hope it's gone now.

My thyroid numbers doubled 2 weeks before the end, panicking me.  The next week they did thyroid panel and it had dropped back to my normal, a great relief.  The possibility of thyroid damage was the side effect that frightened me the most.  When you start treatment, you are so anxious to get rid of the virus that you gloss over the hazards.  I felt pretty different about it after 6 mos.

[PrettyPoisonNoMore]

I had issues with chronic ear infections, and carpal tunnel like symptoms in my hands and wrists.  These were caused by my Thyroid quitting (my TSH was 30x normal) and were resolved after getting on thyroid medicine.  Interferon destroyed my thyroid, I did not test  positive for antibodies of Graves or Hashis. Just get your NP or doctor to order a thyroid panel.  It is a side effect of treatment.

[franke566]

When I would drive and the sun reflected off a chrome bumper or windshield into my eyes I would see pin wheels-like if you stare at a light bulb for a few seconds and look away and still see the image.  For some reason this caused me to have panic attacks you wouldn't believe!  Never had this before Tx-Xanax-only .5 mg twice a day cleared this up. Sunglasses also I might add.  The tingling in my hands was traced to an old neck injury-a couple of adjustments and that problem is now gone.

[lalapple]

my endocrinologist tested me for tingling hands since they thought being jittery could also be due to abnormal thyroid

[SnoWav]

Had it really bad before I started 48 wks of TX , a couple of wks into to TX it went away and never returned even tho the hep C came back.

[newleaf09]

No neck injuries ever, thank heavens.  My family are tall Swedes so joint problems are common with us.  So far I'm luckier than rest with only bad back.  I have had a runners injury that felt just like my aching heels do now. At one point I had the beginnings of carpel tunnel but changed jobs.  I remember the tingling and numbness.  So, Annie, now you have neuropathy on top of carpel tunnel.  Ending TX should fix your right hand and put you in shape to get the left fixed.

Isobella I'm exhausted reading your schedule.  I made a rhubarb pie today.  Having hgb starting to go up a little is a major inspiration to get up.  I am anxious to start getting bored!

Floaters are another side effect (besides lights) of detachment.  Not everyone gets the lights. I don't want to prove it's an interferon side effect enough to ever wish it on anyone else.  And it's not like I jarred anything lose with activity (HA!)  My detachment should be harmless, just annoys me that it and the neuropathy happened when I was so close to getting off meds without anything besides hematology side effects, bad rash & cough.

I was in the Boceprevir trial and the computer spit me out for the 28 wk. group.  Even the nurse was praying that I'd get that arm because I had so many SX.  I thought wait a minute you mean everyone is not this sick?  I'm sure Schering spent an extra fortune on keeping me going but they should get good data.  To be perfectly honest, I don't know what I would have done if I had not randomized to that arm.  I'm sure I would have melted down completely getting to 48 wks.  Maybe would be alright on 48 wks. of SOC but other arm required 48 wks of SOC + boceprevir.  

[franke566]

The ENT doctor had to do a culture-it was a bit uncomfortable but once she did that and they found the proper antibiotic the sinus infections stopped.  I think the sinus infections on top of Tx had me half out of my mind-many terrible days and nites.  Hope you get to an ENT fast!  I was stubborn and suffered for it alot longer than I should have.  Best wishes, frank

[annieCinMD]

newleaf: I don't think it's been quite a year yet, but the eye doctor is on my list of appointments. The ENT appt. can't come quick enough, this sinus stuff is really making me crazy. I think I have fluid in my ears or something. I had a fever yesterday and last night and spent the night wrapped in my blanket. I'm not sure if I am handling the antibiotics so well. I've really lost my appetite this past week and am dropping weight, and no relief from sinus problem, over 3 weeks. My doc likes to treat for 6.  I do think the tingling extremities is a side effect. I just had a CAT scan to rule out other causes of my headaches and nothing showed up. I have carpal tunnel that might explain my left hand but I had my right fixed in January '08 and all that stuff cleared up post surgery. It's back again. I'll be interested in seeing how long it takes for you to start feeling better. You opted out at 28 weeks, right? If I get that choice,  I'm taking it. These past few weeks have been very rough.
franke566: I don't think I wanted to hear that! It does explain why the sinus stuff won't go away.
Yuk: I think I'll scrub that foot with the Ped Egg today. Feet were already dry and callusy, Riba made 10x worse.

[franke566]

Ever had a neck injury-sports or auto injury; whiplash?

[franke566]

during and shortly after Tx I had one sinus infection after another plus colds and even bronchial pneumonia.  I imagine the immune system is weakened.  Every time I saw my PCP I would catch something-once a month-like clock work...frank

[IMstacie]

Annie: I have the itchy foot bottom also on more than one occasion - drove me crazy!

Newleaf - that's really scary about your eyes.  I will keep an eye out for the lights (no pun intended).  I do see floaters.  Vision problems are a sx and supposedly go away.

More important is you!  "Off the riba and boceprevir for 5 days" and 1st day off interferon - How Wonderful!!!!!!

[Isobella]

I'd been working out pretty much the whole time, too.  Little lapses here and there, but not anymore. I have been blobbing for weeks now, since about week 41,  I did walk twice last week, and as usual it made me feel better, but I have absolutely no energy/motivation to do it again.  

We have a big weekend too....I worked, went to my neice's graduation and Sunday we have a shower for my other neice.  Getting winded just typing it, lol!

I had them check my hgb and it is good....around 11.  Up from the 10 it had been, but not the 14 I'm used to.  I guess our bodies just get worn down towards the end.

Thanks for keeping us posted on your post sx.....always nice to know what's ahead.  Can't wait to hear your labs....bet they're gonna be great =)

[newleaf09]

Annie, I wish you'd go see an eye doctor,too.  I don't think your vision should be affected.  I think some of us in studies are taking an especially hard pounding. I know the boceprevir kept me crashed the whole time

I had some hearing loss to begin with but now I can't make out the dialog in movies.  My husband is awfully patient with me whispering "What did he say" over and over.

I'm glad you can handle the antibiotics, they interacted with my meds.  Levaquin was very effective and made everything taste & smell wrong.  Lost a few more pounds on that one.  Doxycycline made me throw up my real meds.  I took the last neulasta shot when my neuts were at 800 because I just couldn't bear another infection and was running little fevers.

Isabella, I have only been a blob for 3 weeks; worked the first 6 mos. and was happy to take off for the finish.  I got a lot worse at the end.  The creepiest sides (neuropathy and posterior vitreous detachment) happened in my last 2 weeks in TX.  I wish they'd learn to individualize TX.  I think those of us with the worst sides may be having such a strong immune response that perhaps we could be treated for a lesser time.  Guess they'll figure it out some day

Today is the first day that my interferon levels should be dropping (Sat. after a no-shot Fri.).  Off the riba and boceprevir for 5 days.  The tiniest bit of energy & enthusiasm have returned since yesterday. Dry eyes better (no drops in 2 days).  Still horribly thirsty at night, probably because of the night sweats. Rash is worse than ever and at its itchiest. I'm actually more excited about seeing if my blood has recovered at 4 wk post visit than the PCR

[annieCinMD]

I've had a lot of these same symptoms. I think my distance vision is going in addition to the close up. I used to be far sighted. All the fluids in my head are making me crazy. I go to an ENT at the end of the month. I'm being treated for a sinus infection on a long run of antibiotics. I woke up today and felt like I caught a cold on top of everything else. Fever, pressure, sore throat, I've been in bed most of the day. I wonder about my hearing, too. I have the itchy foot bottom, too. Sounds like sides to me if we all have one or more of them.

[newleaf09]

Have you seen an opthamologist for the vision loss?  I had an eye episode a week before getting released from meds.  I took my peg shot and within an hour I had lights to the side of my vision in right eye.  Got a consult the next day and the vitreous (jelly) part of the eye had pulled away from the back of the eye (retina area).  I have to go back after 4 weeks to make sure the pulling away does not cause a tear in the retina.  They can repair the tear with laser.  You should get yours checked if you haven't already.  Untreated retina problems can get much worse if not attended to.

The worst of it was that the doctor insisted it was not related to interferon (an hour after the shot?)  He kept saying "I wrote a paper with your doctor".  I really wanted to say "I've written papers on space biology but that doesn't mean I've discovered everything about space".  He insisted it was part of aging.  My mom's 87 and hers are still attached.

[lapis]

Got it, about having to get out of bed.  I realize maybe I should have read your old threads before I told you about plantar fasciitis.  Although my sides were not too severe (except for the GI issues), I know that the meds affected all my body systems.  Nothing was "normal" on tx.  It was the weirdest thing I've ever experienced.

Sorry to hear you've had it so rough.  I sure hope everything resolves for you.   So glad you're finishing tx!  Wishing you rapid improvement and SVR!!

[Isobella]

I have had the tingling of hands and feet. I was told neuropathy was symmetrical, but my sx were not.  I went for massages and it helped.

Odd that you said that in order to get plantar fascitis you have to get out of bed...well, staying in bed can do it, too.  This is what happens (in my case) when you are laying around, if your toes are pointed down, your calves are contracted.  So if you are all night in that position, you really need to stretch before getting up.  If you don't, that's when the problems can start. I would "write" the alphabet with my big toe several times a day.  Having been thru it, I always try to be aware of my foot position to keep it at bay.

At one point, my doc had me roll the bottom of my foot over a can of soup before getting out of bed.  (it was kinda tough to comply with all the water I drink, lol!)  This stretches/massages the muscles in that area. I liked using the larger cans.

Both of these problems happen to me when I put in too much couch time.  Usually a massage and a couple nights walking around the block help.  So, for me it's a matter of pain, tingling vs motivation to get off the couch, lol!  Mostly the couch wins =)

Just part of the fun.

Hope ya feel better.

Izzy

[IMstacie]

"I've had so many weird side effects: hearing loss, RLS, neuropathy"  

I have the same sx's, plus I can't see anymore - getting worse everyday.   I'm glad they go away.  The hearing thing for me is annoying.  All of a sudden it's like my ear has a plug in it - sound is muffled.  Then ears itch and drain - I never had ears drain in my life!  My brain fog is getting so bad, I think I may be losing brain fluid!! :)

[newleaf09]

In order to have plantar fasciitis you'd have to get out of bed.  I just ended treatment so the energy in not yet there.  I've had runners injuries like that before and that's exactly what it feels like.  I guess I could start taking vitamin B now that I don't have to worry about interactions much (interferon won't even start getting low til at least tomorrow), and I think I read here that that is an acceptable supplement anyway.  Thanks to all for your reassurances.  I've had so many weird side effects: hearing loss, RLS, neuropathy that I just suddenly got a little freaked out that I had maybe done some permanent damage, even though I just treated for 7 mos.  I have found that being super-responsive may not be so great after all.

The nurse finally called me back and she says the improvement in hearing is an unknown.  Maybe improve, maybe not.  Her research said that the neuropathy, if caused by a drug, will clear up and if not, it won't (just started in my last week).  All my worst side effects popped up in the last month but the hearing happened early so no point worrying about it.  I would not have stopped the meds anyway.  Thanks again.

[frijole]

I too had neuopathy during tx, especially in my toes.  It took quite a bit of time for it to go away, but it did eventually.  One thing another member said after tx was to check for vitamin B deficiency.  It is a simple blood test.  She had it and her neuropathy extended long after tx was over.  Mine was okay
frijole

[lapis]

During tx I had the numbness and tingling in hands and feet, and sometimes the bottoms of my feet would burn.  I am 8 wks post EOT and those sensations have diminished almost completely, though occasionally I still get the tingling in hands.

That feeling of the heels being stone-bruised?  I am no doctor, but to me that sounds like it could possibly be plantar fasciitis, which I have had in the past.  Since completing tx, and becoming more physically active (yard work, bending over in the garden, etc) I have just had this return.  It's always my left heel.  It happens when we overstretch the back line of the body, as in bending forward from the waist.  The connective tissue from the calves attaches at the heel and is continuous along the plantar surface (sole) of the foot.  This plantar fascia can become torn in certain situations, and I think I did that from all the bending over.  I know I'm supposed to bend at the knees but legs aren't strong enough yet to sustain that position for long.

Look up plantar fasciitis and if you think that's what it is, I have some tips for treating it.  It usually is worst first thing in the morning, improves through the day, and can become sore again at night after standing a lot.

[newleaf09]

My feet aren't tingling.  Heels both feel stone-bruised.  Pain is the less common side effect (if anyone can attract a weird one. it's going to be me), along with numbness and tingling.  Web says stop the drug causing it, and that's been done, but I'm worried it won't go away.  Glad to hear yours did.  Thanks.

[nygirl7]

Newleaf it went away as soon as treatment ended (maybe before even) but was very common with me in the beginning and middle.  As soon as the IFN went away........so did the numbness and tingling.

It's actually not too uncommon but people probably didn't call it neuropathy in posts but tingling hands, feet, fingers, toes or something.