neuropathy

[wyntre9]

(OK - just in case this gets routed to the wrong side again, i apologize in advance.  this is my last try.. .sorry for the glitch.  if it happens again I'll contact cindy)

Has anyone has these symptoms while on TX?

They're associated with neuropathy. Can TX cause this?

". . .spontaneous sensations, called paresthesias which include numbness, tingling, pins and needles, prickling, burning, cold, pinching, sharp, deep stabs, electric shocks, or buzzing."

"...leg symptoms include difficulty walking or running, "heaviness" , it takes lots of effort just to climb the stairs and stumbling or tiring easily."

"In the arms, difficulties with carrying a load of groceries, opening jars, turning door knobs."


I'm a little scared about this.

wyntre

[orphanedhawk]

Your doctor ignored you ?
Is he or she a hepatologist or GI ?

This is not a side effect to take lightly. When I mentioned a tingling sensation to my hepatologist ( whos' a top notch doc and researcher) his eyes got wide and he asked about tingling in my legs.
He mentioned neuropathy and that he's had to pull patients off treatment because of it.

Since your post tx, I'm not sure what can or can't be done, but this is not something to be ignored. I'd call the doc and go ballistic, but that's me.

[streamline569]

It will stop eventually???  I have the same thing my legs and feet have this weird nerve tingle. Sometimes it feels like it's going through my whole body like electricity. All nerve vibrating and tingling. Strange thing about it is one day you can be fine and then you wake up with all this going on,always seems to be after a nights sleep. Hoping this strange feeling goes away forever and glad to know it's not all in my mind. I mentioned it to my doctor but he just ignored me. ugh.....

[RedinLA]

Ask your doctor is it is possible that you can take Neurontin for this, my doctor just placed me on it for pin pricking and crawling sensations, he said it will stop eventually. I am not a medical adviser, so please check this out with your doctor

[wyntre9]

Glad to hear you sound even better today.

I'm hanging in there, getting ready to ,ove last week of May and ma preoccupied with that (as you KNOW).

try skybyrdesatgmal.com

will get back to you soon,

wyntre

ps - thanks for encouragement - yeah - mid-november if i do 48, april "08 if i extend.

[wyntre9]

I will post the berg study for you a little later.  You might want to broswe through it, or even flag NYGirl or ZAZZA if you see thm posting coz they know a lot.

wyntre

[wyntre9]

here's a copy of the Berg Stusdy.  I'ts a little long but has a lot of good info.  Zazzaa poster it.  It's a little long so I apologize for it.

W


Here's post oF THE Berg StudyGASTROENTEROLOGY 2006;130:1086

[sfbaygirl]

Hey Girl!!

Sorry I have been outta sorts and not posting. Sorry to hear your woes. I also had those woes. Never thought they would end and most of the time tried to keep the chin up. I did a pretty good job, but the symptoms you describe sound like some of mine. They came and went. It does end and you will be amazed how fast it goes at your week #? Don't take my history as what will happen to you. I have been hanging around for much more than a year and never heard of what happened to me at the end by anyone. You have made it this far, you can do it. No sense stopping now. Do you have my #? Send me an email and we can talk. Tx can REALLY be hard. The thing I noticed was that the sx wouldn't last long. Perhaps another would pop up, but at least you don't suffer consistantly with the same ones. Hang in there!! How many weeks left? Christmas to May? You are almost half done!!!

I am feeling better and will answer emails this weekend.

Think positive about how you may be helping your liver!! If it is really hurting you check with your Dr. make sure all your Blood etc. is in order before you do anything.

Thinking of you!

Linda

[wyntre9]

'My first PCR was done at week 13. Qual only and it showed detected. The doctor then asked for a Quan and it shows <50. The next one was done at week 35 using both Q's and it showed not detected. Quest Diagnostics Inc using the Cobas Amplicor Hep C virus test. I guess that means it could have been UND anywhere from wk 13 thru 35? Anyone know?"

teufel,

Are you 1A?

if so, from what I've read on forum and elsewhere, the SOC (that NYGirl just completed) is TX 48 weeks if there's a 2 log drop by week 12;

extend to 72 weeks if UND is reached between weeks 12 and 24.

If still detectible at week 24, stop treating.

If you are 1A, you would be considered a 'slow' responder.

If you don't have links to those studies, let us know.

Don't mean to alarm you but I just wanted to give you the info I'm aware of.

Remind us of your genotype.

wyntre

[Teufelhunden]

Geno 1a. Stage 1, grade 0. VL 470,000 at start of tx. Week 44 of 48. Interferon/1200 riba. Doctor has never mentioned 72 wks. Boy, wouldn't it be a kick in the pants if the doc said "Oh by the way..." Hey doc, I got an idea! Lets wait until week 48, then drop it on me!!  Thanks wyntre. I'll make sure to ask these questions when I see him again. No sweat on the alarm.

[wyntre9]

So sorry to hear you relapsed, SJL.

I hope you are successful in treating your post TX sides, and thanks for the info about neuropathy.

Today, i do feel a lot better (after almost a week of bad SX) but I want to be as informed as possible.

Wyntre

[Teufelhunden]

<50 at week 13. UND week 35. The first half was probably the worst but the sx still persist. I guess I've grown use to them. The severity comes and goes still, but just not as bad as the onset. I still weeble wobble on occasion, still tire easily, gripping something still makes my hands ache, can't keep my arms over my head very long, it tires them out, body mass went to hell in a hand basket, joint aches. I feel like I've aged 20 years. But, I just take it one day at a time. No use in rushing through this. Can't do it even if I wanted to. Anyway,the time gives me the opportunity for some serious reflections and soul searching. Lord knows I've needed to do that for years. It's funny, All these years I've always asked for a "sign". Give me proof. Show me. You don't suppose my sign was Hep C? Just goes to show ya, be careful what you ask for!  But hey, if,  the end of my journey brings me health and happiness, love and joy... then it was worth it.  Different story with my job. I guess I'm offically a "whistleblower". Lining up the big guns!  DOD, EEOC, Labor Dept, Lawyer. I love a good fight! I'll keep ya posted.

[wyntre9]

Thanks everyone for sharing.

I hate to be so obsessive but I guess it's another SX!

And I figured out (maybe) that last week's major activity - round trip to the cottage and back and moving stuff was entirely toooooo much.  I think my poor body has been paying for it ever since.  I really DO have to pace myself more.

Teufel, you didn't get UND until week 35?  Did I read that right?

Best of luck with everything.  skybyrdeatgmaildotcom reads about stuff like that.

NYG,

So how'w Wonder Woman's first official 3-month PCR SVR day going?  Bet you're gonna hop in your new car and celebrate this weekend!

:)

[orphanedhawk]

Are you on neupogen? I tend to blame it for everything and anything. The sharp strange pains and tiredness climbing stairs sounds like my least favorite drug of the moment.  
I think nygirl hit the nail on the head. The sides or these drugs are varied and unpredictable.  
  

[SJL]

I have been post therapy for 9 mths., after 124 wks.(off& on)  interferon and I have all the sides you mentioned, plus more.

I have vasculitic neuropathy,( legs & feet go numb, hands also,) All of the crazy feelings you mentioned, and I also have cryoglobulemia attached .

If I remember correctly, the tingling, buzzing sensations came before the total numbness. You should ask your Doctor for further testing.

I am a 1B, stage 3, grade 4 and felt it necessary to rid my body of the Hep C. Unfortunately, my body does not respond fully to the meds. I did go undetected for 6 straight mths., last go round, but relapsed as soon as I got off treatment.

I am now looking into Electrophoresis to attempt getting rid of the cryo.

So, your symptoms do not seem to be out of the ordinary to me. It's unfortunate that we have to go through these treatments, sometimes to no avail. But, hang in there. It is bound to get better!

Sandy

[friole]

I sure had heightened sensitivites during tx and maybe (not for sure) have some periphoral neuropathy post.  What I remember most is the sensitivity.  Had to hang my toes off the end of the bed to sleep because they hurt.  If  I slept on my back, had to pull my sheets out so my toe tips could be free.  Had to cut out all the tags from my shirts - sure hurt my necklines.

My sides got worse as tx progressed.  I didn't have may at first, and the worst was at about 30 -40 weeks.  I can't see the relativity of UND  and increased sides, but perhaps there is a relationship.  I thought it was because of the amount of drugs compounding in my system (and of course, that could result in UND too)

[nygirl7]

I had a problem in the beginning of treatment where my fingertips would go numb and then I couldn't feel them at all - it would come and go and was such a strange sensation.  I think it's probably related.

The good news is this is not unheard of so don't worry (of course if things ever get bad don't ask the forum..go to the doctor it could be completely unrelated, ya know?) but it's a common problem on these meds.

They are so bizarre it's hard to believe the things that happen to us isn't it?

[Teufelhunden]

My first PCR was done at week 13. Qual only and it showed detected. The doctor then asked for a Quan and it shows <50. The next one was done at week 35 using both Q's and it showed not detected. Quest Diagnostics Inc using the Cobas Amplicor Hep C virus test. I guess that means it could have been UND anywhere from wk 13 thru 35? Anyone know?

[Htownwife]

He was 33VL at week 12, the doctor wanted to retest because he said the results might have been faulty. He  went back in to retest at week 16, and he was UND then. So he became UND sometime between week 12 and 16.
At least in his case, the sx's didn't get WORSE when he became UND, but they were always nagging at him, sometimes more so than at other times...pretty much inconsistent with no rhyme or reason.
But I do remember that whenever he pushed himself physically it took a lot out of him and would set him back.
I would guess it's the move and not reaching UND.
And yes, I saw NY cleared...that's fantastic!!!!
She certainly put up a strong fight and deserves this!!!  

[wyntre9]

Do you rememeber what week Greyson reached UND?

I'm just wondering, as sx are getting MUCH worse now and i just got UND week 18, if it's somehow related?

Of course it could all be moving stress, i suppose.

You must be Soooooo releived his TX is over.

And did you hear the good news?  NYG is UND 3 months post-TX!

wyn

[Htownwife]

Sorry to hear you're having a tough time.
Week 20 for my hubby was right before Thanksgiving, and looking back it was a pretty good time for him with fairly stable side effects. He was having a tougher time emotionally than physically at that time.
But everything really hit about week 30.
That was when EVERYTHING seemed to hit at once...nausea, weakness, fatigue, no appetite, weight loss, coughing, etc. (Whew, did I leave anything out?)
He remained in that state for almost 2 month, and slowly started climbing back up
and had steady dips and climbs until the end.
End of treatment was fairly ok until the last week when sx's started kicking him again.
He's been on a slow but steady climb up since then.
Hang in there, it's gonna get better!  

[wyntre9]

What week did you reach UND?

And, since you're almost done, can you look back on the past 44 weeks and pinpoint a time that was especially bad?  Or did it just keep changing from day to day, week to week?

I'm so happy for you that you only have 4 MORE!!!!!!!

BTW - what happened on the job?

wyntre

[Teufelhunden]

I have them too Wyntre, Difficulty walking, heaviness in the legs, hands tingling, tired, stairs, jars, tools, door knobs, dizziness, tilting to one side lower back, knee. I made the mistake of trying to put trousers on one day, one leg at a time. Didn't work. Fell over. Felt stupid. Weeble wobble but it don't fall down. This one did. Hey, I've just chaulked it up to the treatment. If you're concerned you might want to discuss it with your doctor on your next visit. I was talking to my wife today and mentioned that the sx seemed to picking back up at times. It comes and goes though. 44 tomorrow. One box left.

[wyntre9]

I don't know if it's coz I'm a slow responder and just recently reached UND (week 16-18) but my sx are definitely getting worse.

If this is how people who are UND early on, feel, i swear I don't know if I can do this.

I've had every single SX I've seen posted about today, from sour stomach, to tinitis, to eyes problems - oh jeeeezz -

(trying NOT to whine . . . . but having a hard time)

wyntre

[dperry10]

I would think the heaviness in legs and arms would be an effect of the anemia, and the inablility to handle the stairs would be muscle loss as well.  It was really hard for me to walk without holding mikes arm , when we were at "downtown disney" while on vac.  , forget having to walk steps or even up an incline.. I almost feel like I need a push up the hill or stairs.   So I just walk slow.      I was in the 8's then with HGB,    Sometimes I feel a bit disoriented when I get up to walk.  I feel like I am walking on tilt to one side, and have lost my balance a couple of times.