POST THERAPY

[SJL]

After 2 rds. of therapy (48&52 wks.) and 2 rounds of maintainence dosages, I still carry the disease. It has been 6 mths. since my last maintainence dose & I am still having multiple sides. The worse is my legs & feet numbness. I have been diagnosed with Neuropathy, which could possibly reverse itself, but it seems to be getting worse. I use to get a tingling feeling in my legs prior to feet numbness. Now, my feet just go numb in an instant, resulting in many falls. I also have extreme itching, worse than it's ever been. I have every cream available, inc. gold bond, prescription meds etc, & nothing helps. It's mostly concentrated on my arms, hands and head. I use a medicated shampoo & my Doctor has told me to not rinse it off of my arms entirely. I guess my question at this point would be, has anyone else experienced these sides after therapy? I am pretty upset that the numbness is getting worse, instead of disappearing. So, it appears to me as if it might not go away? I appreciate all of you on the forum and only try to write if and when I have tried everything you guys have mentioned, plus others. If I feel like I can help someone I will post to their questions, if not I stay off-line pretty much. You all have so much knowledge regarding Hep C & I feel that I also do, after trying for 3+ yrs. I am a 1B, grade 3, stage 4, with cirrhosis, age 62.
Thank you in advance for all of your support & I pray that soon their will be a cure for all of us. By the way, I responded both times on treatment & relapsed immediately after finishing.
Peg-Intron/Riba,Infergen/Riba,Pegaysy ma

[grammae]

Greetings, I am a post treatment genotype3 kinda survivor. In desperation I searched online for post treatment info. What a wonderful and supportive site to log into. My treatment (tx?) ended Feb /11 with neg. diagnosis. I was elated and trusted that a healthy mind, nutrition, activity, vitamins...was going to complete and heal the effects of the tx. Lo and behold here I am getting worse in my physical being. Just want to let you know how much you have helped me with your information and that I will take your advices. Love gramma e.

[Eisbein]

This post gives me the willies.
I have osteoarthritis in my lower spine. Before tx it was mild, post tx, 2 1/2 years later it was moderate. I got pain in my hip, in my behind, and half way down my leg. Sitting is painful, laying flat for too long is painful, exercise makes it worth.
With all the other post tx cr!p going on, I have not gotten around to complaining about it.
As I see, this one can be a real barn burner.
My back though is not tx related, this is truly old age, no bones about it. It got worse during tx, because I was so inactive, I think so.
This must have been hell for you Kalio, and yes, our lives and well being is in the hands of competent/incompetent doctors.

Ina

[Califia]

You bet!  And then make the detour to Tahoe.

[cuteus]

me too, I hope she is on her way with a club in hand!  could also be cervical disc problems.  I just had one nifty MRI of the neck, disc this and disc that, spurs, etc.,  and sudden neck movement would generate a dizzy spell.  sf, get EVERYTHING checked out. stress test, echo, MRI, the works!

[MissMiss]

LOL!  I second the detour.

I hope she's on her way to the doc right now.  

miss

[sfbaygirl]

Okay, okay! I will go to the dr. with the detour to tahoe first! We are leaving in a few minutes. Anybody want to come check on me is welcome! I can probably get some free rooms at Harrah's. It may be my neck and low back. I have had similar numbness all over from back and neck before. Yesterday was not the same though. I am having stabbing in the bottoms of my feet! Weird. My back started hurting a bit earlier so I used some ice, it is better now.

Maybe pulling that slot machine handle will help those nerves!

Thanks and if it gets worse there is a hospital up there. Hope it's just the narrowing discs etc.

Any of you want to babysit though, we could have some fun!

[MissMiss]

If this were me and my hands had been numb a couple days and today my lip and arm felt a bit numb, I would go straight to my PCP and make him be your Primary Care Doctor.  Do not pass Go, do not collect $200, just get there and ask for an EKG right now!

This could be a lot of different things but it definitely is something.  Califia, shall we offer to drive SFBG?  

miss

[sfbaygirl]

I am so tired of dealing with docs. My PCP has not one clue about Hep C and tells me to see the GI for my problems. He will send me for tests and stuff as he doesn't think the GI is taking care of me. I guess I need to call him for my flu shot anyway. I pretty much don't bother with the docs unless something is bad. The GI just doesn't respond much. I will have to watch this. Can it be dangerous to wait awhile to check it out? Yeah, even my lip feels numb today and arms are numb. Always thought this was my neck, but it doesn't feel that way now.

I'm off to Tahoe for 5 days, so hopefully things will be okay while I'm gone. All my #'s are good! I haven't checked for cyro. Could that be a symptom?

[Califia]

Melissa, TG and big congratulations.  What a relief it must be to know that your heart, at least, is going to keep ticking and the sun will rise in the morning.  Is that birdsong I hear?  Whew!  Really happy for you this test came out clean.

SFBAY:  Hit that doctor over the head and make him/her listen long enough to refer you to someone with a brain cell or two and some remaining interest in the practice of medicine.  This does not sound copacetic at all.  Symptoms that arise during tx should be dealt with, one by one.  My internist informed me last Feb (six months post-) that she had been OVERWHELMED by all the other symptoms and just couldn't bring herself ot follow through on the neuro.  Had I known that at the time...grrrrrr.    (She thought SHE was overwhelmed?????)    Best of luck--and go get 'em.

[MissMiss]

Your hgb is up so I wouldn't think it would be anemia making you dizzy.  Are you hydrated enough? How is your blood pressure? Is it your PCP you think will dismiss this stuff?  I found the GI doc would just send me somewhere else for everything.  Have you been tested for cryo?  I know it isn't the weather there cause my son called last night making his sushi deliveries around SF telling me how warm it was, lol.  It's freezing here.

A few years back I had a bad dizzy episode out of the blue.  It persisted for a week or more.  My PCP sent me to a therapist saying it was (forgive the explanation)some calcium type things running loose in the inner ear that weren't staying in the right spot.  So, the PT would throw me down while turning my head a certain way to try to reposition the calcium things.  Weird, eh?  I was one of only two people she had ever seen who could control the rapid eye movements when dizzy.  (Years back I had a car accident that tore a hole in the ear (perilymph fistula) that cause severe dizziness so I have had practice.)

But you sound like you should be looked at, especially with numb hands.  

Babbling on again.  Sorry.  Let me know how it turns out and be careful.

miss

[MissMiss]

Well, I guess I get to keep plugging away cause there ain't nothing plugged in my heart!  Everything looked great!  I am so so relieved..........  Thank you all for the thoughts and kind words, they did the trick, lol.  Why I have the heart sx's remains to be found.  OR, I just start kicking into a higher gear and grab some health back.  At least now I know I can change gears safely.  

Before I was dx'd with HCV, I had all kinds of the things described here and always blamed it on my back.  I have at least two discs that are gone, one toe with nerve damage after a "bad back attack" and all the back and leg pain that go with the discs in question.  I was scheduled for the new disc replacement surgery but ins. said no.  Often I used to describe this other pain that now sounds like the myopathy or a neuralgia.  Docs would kind of shake their head and I know they were thinking I was a hypochondriac.  Add the sx's of the undiagnosed HCV I was having, like severe fatigue, cognitive issues, gastro stuff, etc. and then add the cryo stuff, I learned real early to do my own homework, be prepared for "the look" from the doc and stand my ground.

Now, with the internet, I have found all of you and a wealth of info and support is at our fingertips.  Yes, Cuteus, I am blessed to have an encyclopedia friend almost next door, :-). She has been such a great help I doubt I can ever repay in full.  Thank you for helping me find her.

So, everybody hang in there!  You, Me, We will prevail!

SFB, are you still doing some excercising?  Makes me nervous what you just described.

Neurontin-I took it for a short while when I had a weird face neuralgia a few years ago and hated it.  I think it probably worked to decrease the sensitivity of the skin but I was absolutely useless while taking it.  

Everyone have a great day!  Gotta go let Dale know how the heart thing turned out.

Melissa

[sfbaygirl]

Great news!!!! I am so glad it was nothing bad. I know what you mean about the "look". Kinda like Judge Judy...man I would hate to be in front of her! LOL

My hands have been numb since yesterday (tingling fingers) but that  leg thing yesterday was really weird. I am concerned. Also for weeks now when I bend over to get something I get really dizzy everytime, so I now bend my knees to pick up anything. I have been excercising some, but not much the past two days.

I know my Dr. will just skip over these symptoms, so I guess I will see if it continues. It's scary stuff.

Congrats again....what is your dr. doing for your muscle pain?

[SJL]

Thanks so much for your words of encouragement. I will answer Cuteus first, which will give you all the insight.This all started in 2002 with 1 M. VL., and has gone as high as 30,000,000. Since then & still continuing I have had Ultrasounds, Sonograms,Myleograms, Cryoglobulin, Bone Scan, Mammogram, Catscan, Doppler x-rays, Carotid Artery, Abdominal Aortic aneurysm, Peripheral artery, Lumbar MRI, E.M.G./N. C. V., Transfusions, Colonoscopy, Liver ultrasound, monthly labs & VL's done about every 3 mths. I have seen 2 Neurologist (the last one diagnosed Neuropathy), while the first diagnosed carpal tunnel in my right hand. I have seen a Orthopedic Surgeon, who sent me to a Neurological surgeon, who said he could do surgery on my back as it showed osteopenia, but he wasn't sure if this would help the Neuropathy? I have gone to a Cardiologist who did a stress test, which only showed mitral valve regurgitation. I also saw a Psychiatrist, twice, who only wanted to give me drugs, my Primary Doctor and also my Hepatologist. I now have an appt. Nov. 28th, with my first Neurologist, who my Hepatologist suggested I see again. I just didn't know what to do next?
I am sure that you can read my frustration in all of this. I am taking two anti-depressants, 3 x per day, Effexor 150 and Neurotin, Linisopril (blood pressure), advil, tylenol, hydrocodone when needed, ultram when needed, vitamin B12 injections, every 2 wks. I am 63 & was estimated that I have probably carried Hep C for at least 30 yrs., due to transfusions.

MissMiss, I think I answered your question above. Just recently my labs showed cryo, along with a tumor marker of 33. In my earlier testing for Cryo, their was none?

Kalio, your Neuropathy explanation is right on. I am now going through the hot poker pain, prior to numbness. My shins & sides of my legs are sore to the touch.

Kalio,I do believe that the Neuropathy is a direct relationship with interferon. At this time, I really don't know what to think?

I see a Psychologist once a week as well as take Physical Therapy. I do believe that both have helped. I question myself over & over, as to why I did the second round of therapy, which was the daily injections of Infergen & Riba. It has totally robbed me of my life. To much doom & gloom-sorry,but I really do appreciate your comments and encouragement. I have decided no more invasive interferons.
Sandy

[Kalio1]

On top of dealing with all that pain, you have to deal with the sides from the meds. you are given.
It could have been the tx rounds, but I would not rule out a spinal/back/hip issue. You could be dealing with more than one cause. It could also be the txing punched up a problem in those areas. the osteopenia is what makes me suspicious something is up in those areas. It can be hard to figure out and identify. I know all the meds help some, but they don't "fix" it and Im sure that is frustrating for you too. For me, they did dull the pain but they didn't eliminate it, just dulled it.  Maybe even consult with another neurologist or even a neurosurgeon, sometimes they can see things on the MRI that slip by someone else. The skill is all in the doctor reading our scans I found.
That is what happened for me, after the surgery they sort of acted like "ok, you are all done, the surgery was a success" but there I was stuck with that ****. It was this great neurosurgeon I met getting another opinion that looked at my MRIs and diagnosed the peripheral neuropathy. He was the one that told me "rest and PT, alternate them regularly and learn your "good" pain "bad pain levels." Good, exercise and stretch, Bad, LIE DOWN. Get out of pain if and when you can. Movement helps heal your nerves" He meant drop everything and assume the most pain free position I had, hard to do but for me it helped. I also started to used the meds on an "as needed" basis rather than on the clock. That helped. I still had them if I needed them and some days I did take the regular dose, but I took more control of when I decided I needed them and that helped. I think the drugs help but in a way hinder the nerve regrowth, but that's just my personal experience. Slowly the rest/exercise pattern began to help. I was told it would not get better and it would not go away by the pain docs and they were wrong on both counts. Maybe its just a doom and gloom thing they tell all of us with chronic pain and neuropathy I dont know, but I could not accept that. I used small weights, 2lbs at first , then 5's. I also used Therabands, they are GREAT. I'd lie in bed, get as out of pain as I could then work with the weights and Therabands. Or I should say clumsily and lamely attempted to work with them LOL
The PT was great also and taught me a lot of movements I could use that helped me towards improving but didn't cause pain.
This took years, and it is so discouraging some days. You hang in there, those dang nerves do keep trying to get better. I used a lot of positive mantras in my head and spent a lot of time thinking about Chris Reeve who had it much worse than me yet remained ever optimistic and kept up his PT. The end result was the neuro placed my damage level at 49% which was a far site better than the 86% he said initially.
I hope you see improvement and have less pain very soon.
Take care. Try not to get discouraged.
Mine isn't perfect now, but it is MUCH better for me 5 years later.

Take care.

[MissMiss]

Three times on tx.  Wow, you really put up the fight.

You never mention any helper drugs, Procrit or Neupogen.  I am curious how low your hgb and wbc may have gotten during these battles.  Since you are positive for cryo now, do you know the type of cryo.  I wonder how much that is effecting your symptoms.  

You hang in there.  You have a lot of friends here to help when we can.

Kalio,  I had no idea what you went thru.  And how encouraging to others to know you didn't give up and have taken the bull by the horns.  

miss

[MissMiss]

I just re-read most of this thread and felt an overwhelming fear that I would somehow loose you all.  This whole thread touched on so many things I have been going thru, albeit to a lesser degree than you describe.  I don't want to lose contact with you and what worked for you may work for me and vice versa.  Maybe I'm just being a bit emotional cause in a few hours they are going to stick a plastic tube up an artery to peak at my heart.  I just wanted you all to know how much I appreciate your open sharing of your experiences and remedies, your fight for quality of life and the empathy you all show for others in the same kind of shoe.  

Ah ****, now I'm blubbering.  Maybe you can read between the lines.  Just wanted to let you know how much I appreciate you all and this whole MH board.  

miss

[sfbaygirl]

I have had numbness, tingling from nerve damage in my neck and back for years. On tx my hands go numb at times, but nothing like it used to be. I read this thread yesterday and thought, hmmm sounds like pinched nerve, but today as I walked across the house I had the strangest tingling in my legs that went to my feet. They got weak and luckily there was a chair there, or I think I might have fallen. It happened a few more times and is now okay. Is this something that should be checked out? It was pretty scary and not like the pain/numbness I have had in the past.

[Kalio1]

Best of luck with the procedure. Please come tell us how it went when it's done. I will be thinking about you and sending you positive thoughts and prayers.

[cuteus]

yes, Cali, we plug on, at our own speed.  I still want to do the extreme makeover thingy.  IF I am going to ache, I want to look good doing so.  I can't believe how different I look from my pictures of 3 yrs ago!

sjl, it looks like you had all the pertinent tests and more!  I too see a neurosurgeon for the herniated discs and the carpal tunnel, he recently suggested Neurontin, and the bottle is sitting in my car, untouched.  someone said brain fog is a side, and  that is one I want to stay away from, but I might try it for a couple of wks.  There is another one they prescribed that does not have the same sides, but I can't remember the name.  All the b vitamins are involved in nerve health, it can't hurt to supplement with them and with a good quality probiotic yogurt, so that your gut can make its own b complex.  Swimming in warm pools is one of the less strenuous and most strengthening ways to get muscle tone back and maintain it. Yoga and tai chi also.  Whatever is working for any of us, let's share, to see if others can benefit.  I am doing the Yoga and the swimming. Ibuprofen and vicoprofen and some supplements that will expire soon, all sorts. If something helps, I won't know which one it was.
miss miss, GOOD LUCK! I am so glad you have a friend nearby, that is so fortunate for you!

[iceboy]

I have excactly the same symptoms as you, but Im so new to this I still havn

[Califia]

SJL, MissMiss--I wish you both the best possible outcomes in reclaiming your lives from ill health and invasive medicine.  Silently rooting for you both!

Kalio, most inspirational, every word you've posted in this thread.

Ivette, guess we just keep pluggin' away, huh?

[jmjm530]

Sorry you're having such a bad time.

I also had skin issues that continued post treatment. I can only guess that the medicated shampoo your doc suggested is one of the OTC brands used for dandruff and its more serious cousin , seb dermatatitis; or perhaps something similar. I also was prescribed those shampoos but they ended up irritating my tx sensitive skin more then helping.

FWIW what I found with the skin is that if something isn't working, or esp if it's making things worse, stop using it. At this point it sounds like you should be under the supervision of a dermatologist, as most liver doctors only have a very basic knowledge of dermatology, or so my experience has shown.

A couple of things that worked for me (in addition to the appropriate medications) was switching to Cetaphil Cleanser instead of soap. As far as all the moisturizes, Gold Bond, etc, sometimes less is more. In fact, I now only use moiturizer (Cetaphil) once in the morning to protect my face from the elements. Other tips are using a mild or baby laundry detergent without perfumes, and wearing only cotton clothing, white preferably.

Hope you feel better soon and let's hope that the new protease inhibitors now in trial will be just what you're looking for. Don't know if you're ready yet, but trials for previous non-responders will be starting soon. If your doc isn't hooked up with these trials, you might consult with one who is.

All the best and do feel better.

-- Jim

[cuteus]

would it be possible to post the MDs you have consulted with, the tests done and the medications tried?  many times you get suggestions to things that you might have already done, and could assist some of us to look further into other things to suggest, things not yet tried.  I am assuming that you already consulted a neurologist, what did he or she suggest or prescribed?
Having MRIs done to rule out other problems is also common when you consult a specialist, was this done?  Nothing to lose in trying the B12 test and the lumbar MRI if not yet done.
It is disturbing that some damage becomes permanent if things are not treated early, but sometimes there does not seem possible to avoid it.  I truly believe that the damage from hep c is here to stay with me.  It took the drs too long to diagnosed it, and the aches and soft tissue damage might have gone on for too long also. now all we can do is treat the condition with whatever is out there, in order to find a level at which we can function.
get back to this thread as soon as you can
feel better

[Kalio1]

Not much to add to Califia's great description but when my neuropathy was at it's worst, it caused hypersensitivity to the point of being painful. Just touching or brushing against the areas would bring tears to my eyes. The neuro explained it was the nerves in "overdrive" In their effort to heal the signals are too strong and the intensity is extremely uncomfortable to painful. You can also get sharp stabbing pains. They feel like "hot poker pain" Even clothes touching the areas can be unbearable. The numbness is sort of the opposite end of the spectrum and of course a whole range of sensations inbetween.

Here is a far better scientific explaination than my brain fogged mind can manage.

http://www.wellcome.ac.uk/en/pain/microsite/science4.html


Califia, I will definately add that vitamin B test to my next bloodwork, thanks for the suggestion. I was tested during the first tx, but it's been over a year ago so time to check it out again.