So far, so good.

[KC]

I haven't been on here in a while but thought I'd check in and let everyone know my labs after 14 weeks were UNDETECTED. I am very excited about that, BUT have not been feeling so great. I'm having problems with fatigue, severe muscle cramps in my legs, joint pain, insomnia, & brain fog. I felt great most of the time on treatment and some days I wish I were still on it.

I don't want to be negative about it because I'm hoping I beat this. It has been a long road to get here but I felt like I hit the jackpot with my labs today. Hope you all hang in there and I will try to get on here more often to keep up with others who are having problems.

Take care all!!!!

[Bree]

Hi KC... we have the same avatar!  So sorry to hear about post treatment symptoms and so glad about your SVR results!  I've heard several people struggle after treatment.  I have 5 days left and I'm really hoping that afterward I feel at least as  good as I do now.  Several seem to think that this post time is the body working things out and re-adapting.  Just wanted to say hi.  And congrats on post SVR.  Take good care of yourself.  Bree

[KC]

Well thank you Bree. I read that post about the body readjusting itself. Maybe that's what it is. I will say that I don't feel so bad I can't function, just wish I felt a bit better than I do.

Good Luck with your journey to rid this monster. Keep us posted! 

KC

[Mugwump]

14 weeks SVR right on KC!!!

Maybe a slow happy dance is in order? at least for some of us. Yes a fair number of us seem to be taking more time to recover and I am one of them. I still have some myalgia and some hepatic discomfort, my stamina is not where it needs to be to work a full 8 hours at a job that requires extreme physical effort. I can still work hard but  only in short spurts.

I am sure that I can still row my boat to go fishing but there is no way that I could pull a 5 or 6 mile row around a lake the way I normally can, or hike and wade a difficult river the way I did last year during Harvoni treatment.

The only reason I think why some of us are experiencing more fatigue effects post treatment, is that we had many more dead liver cells to clear from our systems that those who were less further on in the progress of HCV as a disease. 

HCV is so insidious that many who have it perhaps have huge numbers of the liver cells that need to be gone and Harvoni might just do exactly that. I can easily see it taking some people months to recover from the exchange of substantial amounts of liver cells that removing HCV from the liver can do.

This is precisely why I theorize that HCV might be able to mimic key liver cell metabolic processes that keep the liver from removing the millions of dead liver cells. Harvoni comes along and bang the liver cell is now exposed  as being dead and is discharge from the liver. A simple theory but the only logical explanation of why some of us are more effected than others.

Others with less infected liver cells just excrete the excess Harvoni because the live healthy liver cells have no use for it and just discharge it back into the renal system where the kidneys dispose of the excess drug.

I was very sick with HCV,  was using a cane to get around and had fairly bad pain in my hepatic region a few months before I started on Harvoni.  I also was spry and feeling better than I have in years during the first half of the treatment.

So the only rational explanation why some us are now taking longer to recover is that we were on the point of progressing rapidly into decompensated cirrhosis and our HCV infection was no longer being well compensated for by our immune systems.

I personally thought I would have been extremely lucky if I had another couple of years to fish before the treatment cleared me of HCV.

I am afraid that some of us will just have to learn to live with permanent cirrhosis even though we no longer have HCV.

I hope you are not in this unfortunate group KC and I certainly hope I am not. But let us cross that bridge together if we come to it.

My GI, one of the most respected infectious disease specialists in the province, has already let me know that many people do have advanced cirrhosis post treatment regardless of which drug cleared them of the virus.  We will all just have to deal with the damage that HCV has done and do the best with what we have left of our livers.

All the best for all of us who have compromised livers.

Eric



 

[byebyeC]

Hi KC,

Just a little factoid that I'm going to personally cling to post tx; it takes the liver approx 4 months to completely replace itself (excepting scarred/cirrhotic tissue). That being true, and knowing that chronic hep c has many extra-hepatic manifestations, we should give ourselves at least that long, maybe up to a year, before we start being too concerned about not feeling 100% post tx... Just my two cents. Obviously excepting any serious sx that should be immediately checked out by a dr...

Side note on muscle cramps, google cryoglobulinemia. It's an extra-hepatic manifestation of hepC. Cryo for cold, globul for globe like, and nemia for in the blood. Plasma gelatinizes at cooler temps (extremeties in this case) certain antibodies collect in blood vessels, blocking the blood supply. In worst cases, there're red blotches to black blotches that resolve when warmed. Even in milder cases, like mine, you just feel pain, numbness, tingling (hep c related peripheral neuropathy). There's not a great deal of post cure info. But, early signs say this hepc side will go away once the virus is eradicated... I was treating the pain by sleeping with an ice pack at my feet! Made it worse! Oopsie!!!

Wishing you the very best and a speedy healing,

bye

[KimInTheForest]

I haven't been on here in a while but thought I'd check in and let everyone know my labs after 14 weeks were UNDETECTED. I am very excited about that, BUT have not been feeling so great. I'm having problems with fatigue, severe muscle cramps in my legs, joint pain, insomnia, & brain fog. I felt great most of the time on treatment and some days I wish I were still on it.

Congrats KC on your Undetected status!!! Sounds like you are officially rid of HCV!

Re: your muscle cramps - be sure to check your potassium levels. Even though "normal" range is 3.4-5.4 mmol/L, most people need to be at least 4.0 or higher to feel their best and to not experience muscle cramps.

I have had difficulties post-treatment. And I found out I am deficient in both iron and B12, so am now taking supplements. Those deficiencies certainly can't be helping things like fatigue and brain-fog, or my recovery from ribavirin-induced anemia.

So perhaps have yourself tested for various vitamins and minerals you may be low in. Vit D and magnesium are other important ones to check for. and remember, just because it is in the low end of the normal range, that doesn't mean it is enough for you to feel your best. I am now aiming for high end of normal on everything I am working on.

One thing I have noticed is that prior to treatment I could never take supplements because everything irritated my liver and gave me flank soreness on right side. That no longer happens now that HCV is gone (although I won't have confirmation of being cured for another month).

Best,
kim

[Bree]

KC, I was thinking about the leg muscle cramps.  Once, on a low cal diet, I had lots of leg cramps and it even continued after the diet.  My nurse practitioner friend says its related to magnesium so I take a mag supplement.   Helps a lot!  And the potassium thing and other levels too like Kim said.

I got trace mineral supplement drops (tastes yucky) but try to add a few drops to different drinks to keep trace minerals normal.  Google for the good ones.

I'm still on treatment for 5 days and I get that flank soreness on my right side.  Hope it's just liver working things out...

[KimInTheForest]

I'm still on treatment for 5 days and I get that flank soreness on my right side.  Hope it's just liver working things out...

I had flank soreness near EOT too, Bree. Seemed to not mean anything. I was undetected at EOT and at 4 weeks post-tx. Congrats on being so close to the finish line!!!

kim

[Bree]

Thanks for that Kim... it makes me feel better.  I have gotten in on and off - seems like more now but not like the beginning.  It was making me a bit nervous... trying not to give it any weight...  That's it.  It's fine!!!  I'm claiming that!

[KC]

Hi KC,

Just a little factoid that I'm going to personally cling to post tx; it takes the liver approx 4 months to completely replace itself (excepting scarred/cirrhotic tissue). That being true, and knowing that chronic hep c has many extra-hepatic manifestations, we should give ourselves at least that long, maybe up to a year, before we start being too concerned about not feeling 100% post tx... Just my two cents. Obviously excepting any serious sx that should be immediately checked out by a dr...

Side note on muscle cramps, google cryoglobulinemia. It's an extra-hepatic manifestation of hepC. Cryo for cold, globul for globe like, and nemia for in the blood. Plasma gelatinizes at cooler temps (extremeties in this case) certain antibodies collect in blood vessels, blocking the blood supply. In worst cases, there're red blotches to black blotches that resolve when warmed. Even in milder cases, like mine, you just feel pain, numbness, tingling (hep c related peripheral neuropathy). There's not a great deal of post cure info. But, early signs say this hepc side will go away once the virus is eradicated... I was treating the pain by sleeping with an ice pack at my feet! Made it worse! Oopsie!!!

Wishing you the very best and a speedy healing,

bye

Hello ByeByec,

Thank you for all the info. I have been struggling with these cramps for some time, they have gotten worse the past couple weeks. Once I am up in the morning they seem to go away after walking around. I usually just get them early in the morning, although they are so severe that my calves have been sore all week. I feel as though it is cutting into my sleep.

I looked up the Cryo dx and gee it sure sounds a bit like me. I had some brown spots creeping down my legs onto my feet before starting treatment. My doc said they would go away during treatment and they did. I will be talking to him about this early next week. You really gave me some good info here because I am really at a loss. I have talked to a couple docs and nurses about these cramps and they just tell me to drink Gatoraid take vitamins etc. I have already been doing all these things on my own with no avail. I sure hope this is not the problem but then again you may have put me on the right track. You say you have this? Just wondering what they told you and are you worried?

Thank you so very much and I wish you well with your labs!

[Mugwump]

Hi KC,

Just a little factoid that I'm going to personally cling to post tx; it takes the liver approx 4 months to completely replace itself (excepting scarred/cirrhotic tissue). That being true, and knowing that chronic hep c has many extra-hepatic manifestations, we should give ourselves at least that long, maybe up to a year, before we start being too concerned about not feeling 100% post tx... Just my two cents. Obviously excepting any serious sx that should be immediately checked out by a dr...

Side note on muscle cramps, google cryoglobulinemia. It's an extra-hepatic manifestation of hepC. Cryo for cold, globul for globe like, and nemia for in the blood. Plasma gelatinizes at cooler temps (extremeties in this case) certain antibodies collect in blood vessels, blocking the blood supply. In worst cases, there're red blotches to black blotches that resolve when warmed. Even in milder cases, like mine, you just feel pain, numbness, tingling (hep c related peripheral neuropathy). There's not a great deal of post cure info. But, early signs say this hepc side will go away once the virus is eradicated... I was treating the pain by sleeping with an ice pack at my feet! Made it worse! Oopsie!!!

Wishing you the very best and a speedy healing,

bye

Sounds like you might have nailed at least a part of what is going on ByeByeC. This description from Johns Hopkin's of the condition explains the relationship between an excess of HCV antibodies and  cryoglobulinemia in a clear and concise fashion.

Some of the immunoglobulins involved do have rheumatoid factors so this might just explain exactly why some of us are experiencing prolonged joint pain.

It does seem to me that there were increases in non specific symptoms especially prolonged mild joint pain and myalgia.

Just maybe there is a sudden jump in HCV antibodies in the blood stream as the liver heals and can create more HCV antibodies. Our livers might be programmed to release the antibodies and even the presence of any dead inert HCV rna in the blood at all may trigger the liver to produce the antibodies.

Hopefully it will take just take a while longer for our systems adjust and clear out all the crap in our blood and our livers will adjust accordingly to the lack of a need for huge numbers of HCV killer antibodies.
Perhaps this is all we are really going through not serious long term problems at all Like I said elsewhere maybe we are just experiencing a simple " HCV caused hangover from hell"

Cheers
Eric

[byebyeC]

Hello ByeByec,

Thank you for all the info. I have been struggling with these cramps for some time, they have gotten worse the past couple weeks. Once I am up in the morning they seem to go away after walking around. I usually just get them early in the morning, although they are so severe that my calves have been sore all week. I feel as though it is cutting into my sleep.

I looked up the Cryo dx and gee it sure sounds a bit like me. I had some brown spots creeping down my legs onto my feet before starting treatment. My doc said they would go away during treatment and they did. I will be talking to him about this early next week. You really gave me some good info here because I am really at a loss. I have talked to a couple docs and nurses about these cramps and they just tell me to drink Gatoraid take vitamins etc. I have already been doing all these things on my own with no avail. I sure hope this is not the problem but then again you may have put me on the right track. You say you have this? Just wondering what they told you and are you worried?

Thank you so very much and I wish you well with your labs!

Hey KC,
Honestly, I was actually comforted to finally get a likely answer. My GP checked me for diabetes and I was neg. She put me on lyrica, but it has it's own problems and I LOATHE it... Hep Dr. wasn't interested (bigger fish to fry, I suppose) and this is so rare and researchers are just putting it together that this is happening, without diabetes, mostly in hepc patients. You can be tested for the specific proteins and antibodies to confirm. I'm skipping the extra test and cost since the treatment in hep c patients is to get rid of their c, now that it's possible, WOO HOO!!!, and they're seeing people have this resolve on it's own. Steroids are another tx, not one most of us would or could welcome right now...And rituximab, but it increases hcv numbers... Only post tx if it keeps going... I don't see anywhere that keeping extremities warm would help, but since the plasma doesn't gelatinize above 98 deg., I'd say a heating pad, when you're where you can use one on extremities couldn't hurt...I shall try and update ya

Thank you

Completely agree Eric!
We're rolling along on the train with our Dr.'s. But, we're much more invested in figuring out what is blimey well going on. So grateful to the researchers that are putting the tx together and figuring out these weirdo extra-hepatic joy rides that come with hep c.

I love a good mystery. As long as it's not in my body 

[KC]

14 weeks SVR right on KC!!!

Maybe a slow happy dance is in order? at least for some of us. Yes a fair number of us seem to be taking more time to recover and I am one of them. I still have some myalgia and some hepatic discomfort, my stamina is not where it needs to be to work a full 8 hours at a job that requires extreme physical effort. I can still work hard but  only in short spurts.

I am sure that I can still row my boat to go fishing but there is no way that I could pull a 5 or 6 mile row around a lake the way I normally can, or hike and wade a difficult river the way I did last year during Harvoni treatment.

The only reason I think why some of us are experiencing more fatigue effects post treatment, is that we had many more dead liver cells to clear from our systems that those who were less further on in the progress of HCV as a disease. 

HCV is so insidious that many who have it perhaps have huge numbers of the liver cells that need to be gone and Harvoni might just do exactly that. I can easily see it taking some people months to recover from the exchange of substantial amounts of liver cells that removing HCV from the liver can do.

This is precisely why I theorize that HCV might be able to mimic key liver cell metabolic processes that keep the liver from removing the millions of dead liver cells. Harvoni comes along and bang the liver cell is now exposed  as being dead and is discharge from the liver. A simple theory but the only logical explanation of why some of us are more effected than others.

Others with less infected liver cells just excrete the excess Harvoni because the live healthy liver cells have no use for it and just discharge it back into the renal system where the kidneys dispose of the excess drug.

I was very sick with HCV,  was using a cane to get around and had fairly bad pain in my hepatic region a few months before I started on Harvoni.  I also was spry and feeling better than I have in years during the first half of the treatment.

So the only rational explanation why some us are now taking longer to recover is that we were on the point of progressing rapidly into decompensated cirrhosis and our HCV infection was no longer being well compensated for by our immune systems.

I personally thought I would have been extremely lucky if I had another couple of years to fish before the treatment cleared me of HCV.

I am afraid that some of us will just have to learn to live with permanent cirrhosis even though we no longer have HCV.

I hope you are not in this unfortunate group KC and I certainly hope I am not. But let us cross that bridge together if we come to it.

My GI, one of the most respected infectious disease specialists in the province, has already let me know that many people do have advanced cirrhosis post treatment regardless of which drug cleared them of the virus.  We will all just have to deal with the damage that HCV has done and do the best with what we have left of our livers.

All the best for all of us who have compromised livers.

Eric

Thanks Eric!

[KC]

Hey KC,
Honestly, I was actually comforted to finally get a likely answer. My GP checked me for diabetes and I was neg. She put me on lyrica, but it has it's own problems and I LOATHE it... Hep Dr. wasn't interested (bigger fish to fry, I suppose) and this is so rare and researchers are just putting it together that this is happening, without diabetes, mostly in hepc patients. You can be tested for the specific proteins and antibodies to confirm. I'm skipping the extra test and cost since the treatment in hep c patients is to get rid of their c, now that it's possible, WOO HOO!!!, and they're seeing people have this resolve on it's own. Steroids are another tx, not one most of us would or could welcome right now...And rituximab, but it increases hcv numbers... Only post tx if it keeps going... I don't see anywhere that keeping extremities warm would help, but since the plasma doesn't gelatinize above 98 deg., I'd say a heating pad, when you're where you can use one on extremities couldn't hurt...I shall try and update ya

Thank you

Completely agree Eric!
We're rolling along on the train with our Dr.'s. But, we're much more invested in figuring out what is blimey well going on. So grateful to the researchers that are putting the tx together and figuring out these weirdo extra-hepatic joy rides that come with hep c.

I love a good mystery. As long as it's not in my body 
[/quot

Well, I am going forward in hopes that it goes away soon. I have found going to bed with a heavy pair of socks on seems to help. I figured out over time that when my feet got cold it would happen. Thank God I live in Fla. I will tell you this whole TX has been an experience. Everyone is different and has had different symptoms and that is why this site is so good because we can enlighten each other. Praying for your labs to be good which I'm sure they will. The waiting is the hardest part....

[byebyeC]

Amen KC

Great luck on the rest of your journey!

One of the worst cases of cryoglobulinemia vasculitis, I've seen online, was a woman in FL. I'm guessing here, but if you're very thin, even in FL, that your extremities can get below 98 without a lot of trouble during certain times of the year and with AC. AC must be on all the time where you live (?) If warm socks helps, that's a bit of confirmation.

With me, not thin and in AK, cold happens, lol

So true about tx. Oy vay!

Thank you for your prayers <3 They're very appreciated. 

[ricpark]

Muscle Cramps in Liver Disease
http://hepatitiscnewdrugs.blogspot.com/2013/11/articles-in-press-muscle-cramps-in.html

Another study on cramps, I have had lower leg, feet, toes, and hands for years (try to drive a manual transmission with all four limbs cramping). They got alot worst after Chemotherapy peripheral neuropathy, every night and day. I found the info above to help me alot, most nights no cramps.

What I take
Mag-Tab SR (slow release magnesium lactate) My Doctor recommended
Vitamin E
Branched-chain amino acids
Taurine

I showed the study to my Doctor and what I'm taking. He gave an Ok if it helps

[KimInTheForest]

Thanks for posting the useful info, Rich, on your formula for combatting the muscle cramps. And good to see you on the forums. Have not heard from you in a while. Have you reached 12 weeks post-treatment yet? My date some up Oct. 20. That will be the one that counts!

Update: Just realized we started at practically same time, Rich, so you will just be reaching your SVR12 one day ahead of me. Good luck!

cheers,
kim

[byebyeC]

Yes, thank you Ricpark,

Gonna bookmark your link for post tx time


KC,

Wool socks helped!!! Don't love hot feet since I already run a bit on the hot side these days... Better than pain though Tx has also helped, taking my feet and legs from excruciating to stinging in just a few days time. The socks took it down to almost not there!!! WOO HOO!!!

I'm bringin' leg warmers back from the 80's lol

Still gonna keep the supplements in mind for post tx, since it appears it becomes a different issue (?) then...

So SO great to have y'all as "been in the trenches, so y'all actually know what you're talking about" deep well of great info.

<3 Marianne 

[MelHu]

Hi KC and everyone else!
I too have been having problems with aches and pains along with the breathlessness that comes from the ribavirin and hemolytic anemia. But mostly I have been experiencing a very prominent bumpy rash all over my body. Some places where these bumps colonized got very red and erupted and started oozing. I'm a wreck over it because it's all over my hands and I'm wearing gloves over band aids because I take care of my two grandchildren. I finished my last Sovaldi/Ribavirin on Sept 19. Lab results from that day still detectable but <20 IU/ml. It almost saddened me to swallow the last pills because it ruled my life for 12 weeks. It was like a crutch or a link and I wasn't going to have it anymore. Part of it was the fact that my previous labs at 8 weeks were at 40 IU/ml. So here's hoping someone ca share stories on the skin problems and also feeling anxious about still being detected Post TX. I'm so thankful for this forum and treasure everyone's input.

[byebyeC]

Hi MelHu,

I'm certain fellow riba sufferers will chime in here soon. Till they do, you're not alone. Riba rash is a very common sx of tx. Like Snidely Whiplash coming up behind Dudley Doiright, riba is the gift that keeps on giving and giving and giving...

So far, what I've seen, is people are using either potato starch or gold bond powder on the bumps till they dry out and then they just fall off. Sounds pretty good Also, since you're now off tx, things should be getting better every day! However, the gloves may be making it worse and stay (just on your hands) since it appears drying the rash out is the cure... It may be impossible to avoid since you're caring for your g-babies. Maybe after meals are over you can just powder up and leave the gloves off(?)

The pills are gone, therefor so is my safety net, feeling, is not uncommon either... There are so many stories of folks achieving SVR post tx that still had "a number" even after EOT. Don't give up hope! The effect of the medicine will go on after we stop taking it.

God bless and know you're not alone,
Marianne

[MelHu]

Thank you Marianne. It's truly amazing that the RIBA keeps on giving and giving. But I'll take all the bumps in the world to achieve SVR.  I wish it for all. I do think though you are right. Keeping them covered is making it worse. I just dont want to ooze on the kids.  I will try the powder. Tough nut I'm in!!! Appreciate the reply.

[MelHu]

Hey Marianne
I forgot to mention good luck on your TX and wow VL from 7 million to 1200 BOOM after 3 days?!?!?!  Fantastico!!!!! Sending my well wishes to you from Calidornia to Alaska!!!!!

[byebyeC]

Why thank you MelHu!