Immune problems after treament

[Bestmomy]

I'm grateful to be cured of hep c after harvoni treatment ending in April.  But my post recovery has been hard.  For two months now I'm breaking out in hives and I'm red around my eyes with  eczema type redness and look zoned out.  This never happened before I treated. I have upped thyroid meds to stabilize since post treatment after testing lower,  and I did also test on the lower end of B12 but since these problems developed near the time I started to take B12 supplements for a couple of days,   I stopped.  I've gotten consistently worse so I don't think it was b12 supplements. My doctors can't explain but I appear to have developed an immune issue.  Does anyone know how to help this?

[KimInTheForest]

Hi Bestmomy. You are by no means the first person on these forums to experience what appears to be a heightened immune response post-treatment -i.e., symptoms and bodily reactions that seem to be auto-immune issues. I had much the same thing post-treatment, and it was quite debilitating for several months but then gradually improved and disappeared. Now, 6.5 months post-treatment, I am fine.

Other people here on the forums have also posted similar issues post-treatment. And someone's GI in Boston commented to him that there appears to be a pattern of auto-immune issues in post-Harvoni patients.

We all have our own theories. My theory is that the rapid elimination of virus, after a lifetime of living with it, can leave a person's immune system temporarily out of whack - on high alert when there is no longer any need to be. And that is the basis of auto-immune problems. I think patience is really the key word as the body and our immune system adjust to their new life without Hep C.

good luck!
kim

[Else]

You are by no means the first person on these forums to experience what appears to be a heightened immune response post-treatment

This may be related but is still a mystery to me:  out of the blue, in about 1982 I developed allergies.  Sneezing, running rose and watery eyes.  But nothing benedryl couldn't handle.  I was tested and the results were animal dander, mold and pollen.  I actually got a chuckle out of the results because they were basically telling me I was allergic to my life. LOL  I'm a dog person, outdoorsy and live in Washington State.  So for almost 20 years I had benedryl in every medicine cabinet, glove compartment and purse that I owned.

In 2001, I moved to a farm.  All of my known allergens were there in abundance, and then some.  But strangely enough, my allergies vanished as abruptly and inexplicably as they'd shown up decades before.  I thought it was odd but was grateful since they were a pain in the butt.

Moved off the farm in 2009 - still no allergies.  About one month into treatment with Harvoni (Oct 2015), they came back.  How does HCV factor into this exactly?  I have no idea.  But to my mind, there just must be some sort of connection.

Bestmomy, have you tried taking benedryl?

[Bestmomy]

Thanks for your reply!  I'm just learning how to respond to this site.  I have been living on benedril every night, and also tried clarentin and zyrtex.  My eyes are the most annoying. My family practice doc referred me to an allergy doc, but feel certain I would have the same results as you , allergic to my life, and I'm so tired of doctors!  But if this continues I will do whatever.   I'm not really sure how to get my immune system back to par, I know things can get worse and I guess that's the fear I can try not to live in.  I hope like you it just resolves.  Thank you again!

[beto]

a tenet of most healing disciplines is that the body always trys to return to homeostasis.  As Kim mentioned, years fighting a vastly prolific virus that copies itself 24/7 by the trillions suddenly dead.  Bam.  Cured right?   You no longer have the virus but are you in balance?  High alert immune system, yes.  Also, all of the affected organs and systems of your body, must heal and return to some equilibrium.   Lots of educated guesses and yes I have also heard from more than one professional regarding active immunity and proliferation of antibodies.  My protein count shot up after tx.

I hope you are doing better.  I find all of this post treatment stuff facinating.  Patience I guess.  I have had off and on issues too.  1st thought is.."oh my god"  relaps?  LOL  .  We are all gonna be fine.  I hope there is a lot of study on this issue soon.

[WholeFoods]

a tenet of most healing disciplines is that the body always trys to return to homeostasis.  As Kim mentioned, years fighting a vastly prolific virus that copies itself 24/7 by the trillions suddenly dead.  Bam.  Cured right?   You no longer have the virus but are you in balance?  High alert immune system, yes.  Also, all of the affected organs and systems of your body, must heal and return to some equilibrium.   Lots of educated guesses and yes I have also heard from more than one professional regarding active immunity and proliferation of antibodies.  My protein count shot up after tx.

I hope you are doing better.  I find all of this post treatment stuff facinating.  Patience I guess.  I have had off and on issues too.  1st thought is.."oh my god"  relaps?  LOL  .  We are all gonna be fine.  I hope there is a lot of study on this issue soon.

Well Beto, I certainly hope you are right about this because I'm almost 1 year post treatment and still feeling awful. My resistance and stamina are still low. Also, tree pollen has been high in my area recently and seems I am really feeling it more than ever before. My digestive system is back to being out of whack and having problems reacting to certain foods more than ever; dairy products, nuts and all kinds of stuff. These are problems that were starting to get worse before treatment, so was hoping it would all get better, but instead has gotten worse again. I really hope it will all even out with more time.  I literally look like death warmed over right now. I was diagnosed stage 2 four years before treatment.

[Mugwump]

Let us consider HCV from the perspective that it is a very sophisticated parasite. If we look at the virus from this standpoint then we can understand that in evolutionary terms it may very well have selected to stimulate certain immune functions in the body of the host liver which it needs to exist.


Remove HCV: then the immune system must normalized only on terms of what your dna is capable of doing.


Supposition;


That HCV replaces some immune functions in the human host: to enhance the environment. Instead of immediately killing the host it will slowly overtake and replace certain immune cell production function(s) by altering some MAPK immune structures created in the liver.


If this is the case then perhaps HCV might have some use after all and the changes that it makes might lead to the discovery of effective cancer and other drugs.


I look at it this way if you are given a pile of manure it is far better to create fertilizer. Just perhaps the study of how HCV specifically messes with the human immune system might be an interesting field of research.


Considering that it seems to be a sleeper disease that needs the victim to reach a radical exposure crisis to spread so the longer it lives in the victims the greater it has a chance of reproducing and spreading like the alien zombie maker it is!


Symbiotic host alteration by a parasite is common in nature and I see no reason why an extremely specialized parasitic virus like HCV should be any different in this regard.

[WholeFoods]

I sorta get what you are saying Mugwump, but the contemplation only leaves me with more questions... are you saying maybe an individual's DNA may not be capable of returning back to fully functional after HCV?

I think the new discoveries in cancer treatment research are astounding, however, I remain cautious as we've heard similar exciting news before and yet cancer remains largely incurable as they're still mostly using chemo and radiation.  The newer treatments for lung cancer and such is promising though.

Symbiosis is a conversation I had with my GI when I visited him seeking treatment with Harvoni and I get that too. I had a biopsy in 2000 which only registered as "inflammation" - despite healthy living, I progressed in 10 years to stage 2 fibrosis. I did not want to live symbiotically with that virus anymore as I was beginning to actually feel it gnawing away at me. 

Despite all that, I sometimes wonder now.... "what have I done to my body?"  I really try not to dwell on it, but occasionally it gets the better of me and I get a bit down. But I consider it a feeling and it passes. I just try to make the best of each day is all, really. Not much else one can do beyond that. :-)

I guess I should add that I have no problem being a part of something that could help others that come after me, or a part of helping the medical community to build better drugs for the future. It's partly why I decided to go for Harvoni when I did instead of waiting for a few years, the other part being I was starting to be a lot more symptomatic with those awful on again/off again flu-like symptoms.

[Mugwump]

I sorta get what you are saying Mugwump, but the contemplation only leaves me with more questions... are you saying maybe an individual's DNA may not be capable of returning back to fully functional after HCV?

I think the new discoveries in cancer treatment research are astounding, however, I remain cautious as we've heard similar exciting news before and yet cancer remains largely incurable as they're still mostly using chemo and radiation.  The newer treatments for lung cancer and such is promising though.

Symbiosis is a conversation I had with my GI when I visited him seeking treatment with Harvoni and I get that too. I had a biopsy in 2000 which only registered as "inflammation" - despite healthy living, I progressed in 10 years to stage 2 fibrosis. I did not want to live symbiotically with that virus anymore as I was beginning to actually feel it gnawing away at me. 

Despite all that, I sometimes wonder now.... "what have I done to my body?"  I really try not to dwell on it, but occasionally it gets the better of me and I get a bit down. But I consider it a feeling and it passes. I just try to make the best of each day is all, really. Not much else one can do beyond that. :-)

I guess I should add that I have no problem being a part of something that could help others that come after me, or a part of helping the medical community to build better drugs for the future. It's partly why I decided to go for Harvoni when I did instead of waiting for a few years, the other part being I was starting to be a lot more symptomatic with those awful on again/off again flu-like symptoms.

Don't forget that HCV is a reto virus not a full fledged organism with DNA so it cannot modify the host DNA otherwise we would be in a real pickle.  Like in the original movie Alien where removing the parasite kills the host. No this is not logical: but I think it might very well take some of us who have had the infection longer a greater amount of time to normalize our immune systems post cure.


During infection it is entirely possible that the some key proteins HCV creates effect our immune system by modifying key immune factors that are produced normally by liver cells.


My supposition is that the HCV virus has evolved to not kill off strong hosts that do not rapidly infect but has evolved to select systems in hosts (infected individuals) who have strong immune systems. What good is a dead host to the disease?
Spooky to say the least but as Spock would say "logical". None of this supposition is not in keeping with how we know parasitic organisms have evolved. So why cannot a simple but nasty complicated retro-virus like HCV not selectively evolve in the same way?


We cannot cure the flu or the common cold but it looks like because Mr. Sofir flew in the face of critics and nay sayers then worked out a way to deliver antivirals directly into liver cells: HCV might be on an evolutionary dead end. However there may very well be much to learn from the methods this virus employs to survive and thrive, considering how diabolical the mechanisms it employs really are. 


Not that I want the virus back but the study of the changes it makes in infected individuals might very well lead to other important tidbits of information about the human immune system. And those of us who have the antibodies in our systems for the rest of our lives should be studied in detail for how we react post treatment and especially how our immune system behave. For this type of study I would volunteer.


We are on the cutting edge here and by surviving this infection we must have had more than just good luck to have made it this long, where many others have succumbed much more rapidly.


Eric

[beto]

Whole foods,

Yes a year is a long time, but think about all those years with the virus.  We. all of us, lined up screaming for these new drugs.  We just wanted it gone and to feel better.  "How our lives will all change once we are cured."  Now I keep hearing this post treatment gospel of "when am I gonna feel better".  There are probably a multitude of reasons for this phenomenon and we continue to discuss and to try and figure it out.

Eric has taken the discussion here to the symbiotic connection which I find very intriguing.  Indeed it is a retro virus, but I wonder what epigeneticists would say.  Any environmental factor from within or without might just have a lasting effect on our DNA. 

HCV is a fascinating virus.  No matter how you paint it, you coexisted with it and it became a major part of your physiology and as Eric pointed out has its own demands from the environment through the host.  Whether random survival or, intelligence of some source,  this simple replicating piece of genetic material wrapped in protein may well change us, and in a way, be in the drivers seat on many physiological levels.

If we are truly on to something here (and not just speculative dribble) depending on the person, it could take a few years to settle down.  Only time will tell.  I will say; that on this forum I have heard from folks that sang the SVR blues for a long time and then out of nowhere reported very positive changes.  I expect you will too Wholefoods.

[WholeFoods]

Thank you to Eric and Beto for your inspiring insights and ideas. I am so grateful for this forum and the people on it who share their experiences, thoughts, ideas, what they've learned and words of hope and encouragement. We truly are a unique group, highly misunderstood and a very complex study in biology to be sure. I look forward to reading more of your posts, and others too! So glad and grateful folks are continuing to post after treatment.

Thanks again for the proverbial shot in the arm you two.

[Bestmomy]

Thanks for all this feedback on this topic.  It really does make sense. And, it reminds me of how I felt prior to treatment, that I want to be a part of curing this disease. That is real purpose.  And guess what, I'm feeling better, even with some relatively minor things going on at this point.  Yes, better!!  A year post treatment with harvoni and finally I can say this!!!!!   The biggest fear is relapse, and hopefully that will subside too!!   I know if I could open up more about my personal journey it  could help others.  This group gives me hope and courage to do this.

[amocuatli]

I am two, almost three years post Oly/Sov I have significant problems with joint pain swelling and also tendonitis. I went to a rheumatoid arthritis doc who assures me, after testing, that i dont have that. When i wake up in the am i can barely walk because my feet are so stiff, i have pains that just sudddenly come on for no reason, the middle joints of both my feet and hands are inflamed, Ive had trigger finger in the middle finger of both my hands. Both my hands itch and sometimes the pain goes up my elbow. Right now my wrist is inflamed and painful

Is anyone dealing with the same issues and what can i do next? Also i have fatigue and stomach upset.

Thanks in advance for any andall answers to my question
Id write more but my hands are going to sleep

[beto]

amocuatli,

So sorry to hear about your situation.  I know of folks that have similar issues going on with stiff and painful joints and muscle, that defy a conventional diagnosis of the expected inflammatory markers.  These are people that are not HCV survivors.  As has been discussed above, there is so much we can't even begin to explain, and it may be some time before we get answers.  We got the cure we wanted...we called it a miracle.  Meanwhile, our bodies are suddenly striped of a physiological bed fellow that had been with us for often decades. 

I personally have more arthritic issues that before tx.  I feel lucky that mine are manageable and  actually typical of others my age.  I think it is very important that this discussion be continued so that perhaps we can find some (at least) empirical answers.

Good luck.  Hope that your situation resolves or improves very soon.

[drummerman]

Is anyone dealing with the same issues and what can i do next? Also i have fatigue and stomach upset.

Thanks in advance for any andall answers to my question
Id write more but my hands are going to sleep

Yep,  I am having joint pain that comes and goes.  Generally felt like crap for 6 months EOT, depressed as well, weak, etc.  Feel like I have aged 5 years in this past year and a half... but these past 2 days I have had glimmers of how I used to feel before tx, which was pretty good.  Hope this trend continues and I think it will cause I went through this the first time with interferon and one day I just woke up and was back to normal. 

hang in there!
dm

[HazelAustralia]

Hi all,
I do feel like my immune system is disturbed, which I think is understandable. I have a bad upper respiratory infection which is worse at night when my breathing is audible. I also have some strange skin things going on. I have recently noticed that when I try to wring out a blanket that I have washed, or try to squeeze together two parts of a bracket I'm attaching to the wall, that I have severe shooting pains in my hands. I'm just finished treatment so I'll see how it goes. Maybe it's an after effect of the asthenia - the small muscles building up again? I'm going to the doctor on Tuesday and will get my lungs checked and get some tests done then.
Best wishes to you all,
Hazel

[slats1056]

 Here is something to ponder. I have recently been reading up on all of this in reference to My situation. Something that has come up that I want to do more checking in to is , Mitochondrial toxicity . What effects that it has on the DNA and Immune System in relation to treatment with Harvoni and its' after Tx. problems/how it manifests itself.
 Going in for another round of labs/bloodwork today , and hopefully will get My SVR24 results back soon. Sleeping good and eating good. Feel pretty decent in the Mornings but start flagging hard mid-afternoon. Fatigued to say the least. Joint pain is manageable most of the time. Hate to say it , but the damn headaches are back.
 Note using any supplements or OTC meds. except the occasional Zantac and some Advils at bed time. Still waiting on several test results. No diagnosis at this point in the game.

  Heads up and keep on truckin'

 YOU CAN'T ALWAYS CONTROL WHO WALKS INTO YOUR LIFE , BUT YOU CAN CONTROL WHICH WINDOW TO THROW THEM OUT OF!

[2Thrive]

Hi - completed 24 weeks of Harvoni in January. 8 weeks into treatment and the virus was undetectable. Once I stopped treatment I felt fine, then like you my immune system felt compromised. Got the flu and secondary infections after. So reached out to some knowledgeable folks and here's what I learned.

The thymus is critical in fighting infection, it creates the T cells that are a first line of defense and it gets clearly compromised. You need to support it. I started  a protocol of 1 teaspoon Vit  C (ascorbic acid, not other forms) and milk thistle in the morning and at night in water. Also please know the B 12 is not well absorbed by many ...it needs to be a methyl B, sublingual. The methyl component is critical.

 Get on a good multi vitamin, not a gummy. Gummies do not contain the trace elements and minerals that the immune system needs, like zinc, selenium etc. The formulation of the 'gummy' product does not allow the trace elements to be bound so most of those vitamin products are not complete in terms of minerals and elements that your immune system needs.

It is now three month post treatment. My energy is coming back and I have a SVR! Enzymes are normal.  Praise God!

My next check in is July and things are looking good so wanted to share what is working for me. You can get the powder ascorbic acid & methyl B 12 on line.

Be blessed

"2Thrive"
-----------------------------------

HCV since 02/23/1984
GT 1b
03/2002 to 10/2002 Pegintron/Riboviron -Failed
07/18/15 VL 7,100,000
07/18/15 FibroScan F4
07/18/15 Necroinflam.act.grade A3
07/18/15 ALT 196 [ref 6 -29]  AST 149 [10-35] 
07/31/15 began Harvoni - 24 Weeks
08/21/15 VL 1,520,000 ALT 39  AST 34 
09/18/15 VL Undetected!!!  ALT 27  AST 31
12/23/15 VL Undetected!!! [SVR12] ALT 30 AST 26
01/13/16 EOT
04/13/16 VL Undetected!! ALT & AST - normal

[Nikki]

Hi there,
Some of you might remember I went on 14 days of Harvoni and experienced such bad sides I had to discontinue. I still am almost obsessed with what could have possibly gone wrong.

I have male friends who have 0 sides and complete the treatment almost as if they forgot they were on it, yet some of us experience very weird issues I seem to think men for whatever reason tolerate this drug easier. Muscle mass, hormone, who knows.

There is so much misinformation about this drug its mind blowing. We are all just guessing, I have read almost everything printed and NOT printed and not being a doctor understanding the BBB connection is fascinating. That said, I was only on this for 2 week and am more achy and tired then I have ever been. Docs minimize what I am saying, they either don't know or don't care, not sure.

I only hope that this is a safe drug my instinct tells me that its not, for some of us. Depending what stage you are in your life, with the virus. Right now we are the first ones out of the gate, I think a lot of the feeling more energetic is the drug itself I still think there is some amphetamine like substance in it. Having used drugs  in the past. the feeling was quite similar. One day I am going to have to find a cure, and I wish everyone health. We all want to read good news.

I do have a question is this forum financed by any pharmaceutical company? why are you keeping stats. just wondering. Thanks in advance and I hope that anyone who is experiencing side effects posts them, we are all in this thing together.

[KimInTheForest]

Something I am starting to give some thought to is reducing/removing gluten from my diet - at least for a while. David Perlmutter (MD), author of Grain Brain, says this on his FAQ on his website:

Question: Is it true that nobody can properly metabolize gluten?

Answer: It is likely that 100% of humans activate zonulin when exposed to gluten, and this increases gut permeability. This is thought to play an important role in autoimmunity.

Source: http://www.drperlmutter.com/learn/faq/is-it-true-that-nobody-can-properly-metabolize-gluten/

So it occurs to me that if HCV treatment and rapid clearing of virus has left some of us with temporarily overstimulated immune systems (from years of fighting an invader that is no longer there), then perhaps an additional autoimmune burden/provocation like gluten becomes a problem, even if we had no gluten issues before treatment.

BTW, I am now nearly 9 months post-treatment, and the post-tx problems I was having earlier are basically gone, apart from the fact that I cannot absorb or retain iron (which is a drag - I am still quite anemic). So the problems do sort themselves out and settle down over time. But I think anything we can do to remove stressors and burdens from our body will speed that along.

kim

[gnatcatcher]

. . . I have male friends who have 0 sides and complete the treatment almost as if they forgot they were on it, yet some of us experience very weird issues I seem to think men for whatever reason tolerate this drug easier. Muscle mass, hormone, who knows.
. . . I do have a question is this forum financed by any pharmaceutical company? why are you keeping stats. . . .

Nikki, I'd been thinking that as far as I recall, most of the time on these hep forums when someone reports having relapsed, the person is male. Thank you for presenting the other side. We don't have all that much evidence either way. It's always been a regular forum member (not a company) who starts a thread for keeping stats, but we realize we are self-selected, so it's an unscientific sample. Sorry Harvoni wasn't right for you -- here's hoping one of the other new treatments coming down the pike is just what you need to get cured.

Kim, very interesting. Dr. David Ludwig of the Always Hungry Solution diet has people stay off all grain carbs for the first phase of the diet, in large part for glycemic reasons, but it seems to have other benefits (in my case, a smoothed-out energy level and much less farting). Now that I'm in a phase that allows limited quantities of wheat again, I'll have to pay closer attention to any connections between the amount of (autoimmune) joint pain I experience vis-a-vis the amount of gluten consumed.

Gnatty

[amocuatli]

Thank you all for your thoughts on this matter of achy joints.  I am extremely grateful for the cure-- i read where it may have added as much as 12 years to my life! Maybe i have other issues going on, too. I WILL figure this out!
Love you brothers and sisters, Amo

[amocuatli]

Thank you all for your thoughts on this matter of achy joints.  I am extremely grateful for the cure-- i read where it may have added as much as 12 years to my life! Maybe i have other issues going on, too. I WILL figure this out!
Love you brothers and sisters, Amo

[Philadelphia]

This forum is not owned by a pharmaceutical company and the only reason members keep stats is for our own curiosity. With these drugs being so new, people were interested to see if the results we saw here came near the results of clinical trials.

[Mugwump]

I do have a question is this forum financed by any pharmaceutical company? why are you keeping stats. just wondering. Thanks in advance and I hope that anyone who is experiencing side effects posts them, we are all in this thing together.

Sorry you have this suspicion. What I have seen is that forums that are sponsored by companies with a vested interest in keeping their image up would not allow a thread like this and would jump on it and delete posts.


https://forums.hepmag.com/index.php?topic=3934.0


I am thankful that Gilead did have a compassionate assistance but am not at all thrilled at their pricing. This disease is a scourge and is much more wide spread than many believe. I have know many who have slowly died of this disease over the years and it is absolutely criminal to not treat people who have not yet developed liver damage.


There are very many people out there who need to rid themselves of this virus before it debilitates them. I was cirrhotic with perhaps 2 years of life left before the inevitable kidney failure and bedridden end that HCV brings on with end stage liver disease. But I still feel very strongly that a concerted political push is desperately needed and the public in general needs to wake up to the smoke and mirrors that is going on with this disease and how those who have not progressed to cirrhosis or F3 pre-cirrhosis are being shunted aside because of the ridiculous costs of the cure.


I definitely experienced immune issues post treatment but they are slowly starting to ease off and my joint pain is no where near as bad as in 2013 when hepatic encephalopathy and chronic weakness with reduced mobility started to make me consider going fishing and not coming back.


Today I am working cooking 10 hour shifts for 80 seniors and am doing things that I had given up all hope of every doing again because I was cured of HCV just in the nick of time.


All the best 
Eric

[FutureThinker]

Mugwump, you are spot on and I am happy to hear you are functioning better at this point. Perhaps we are expecting too much for post treatment when these new drugs, overall, are relatively side-free for many during treatment? It is a journey, indeed.  FT

[amocuatli]

I have been clear of theHCV virus for at least two years now-- i have been having LOTS of problems -- the middle joints in my toes and hands have tendon problems, trigger finger, achilles problems, in the AM i cant walk. I have steatosis that happened AFTER I became free of HCV, something like mild Reynauds in my feet, and now ive been diagnosed with COPD-- i know that maybe nonevof this is related at allbut i cant help this sneaking suspicion that it is-- i had a resting heart rate of 59- 61 now it has shot up to 79. Does anyone have any experience with Cryoglobulinemia?? Im looking at maybe im having problems with residual proteins in my blood that are clogging up the works...please ANY INFO/experiences WOULD HELP

[Bestmomy]

I am having similar problems in my joints in my fingers.  Please let me know what you find out. Blessings.

[amocuatli]

I will bestmoney... Did you have a high viral load?

[Bestmomy]

Not really so high
It was 1.8 mil, so in the moderate range
I was 1b and was treatment naive and completed 12 weeks
My skin issues have tamed down this summer but my joints have not. Walking a lot has helped, but my finger joints show new damage. I'm getting used to my reduced vision and have gotten new lens. Still, Overall I've been much more positive. Reading over my journal early on after treatment I was extremely depressed.  This is much better. 
Good luck with your tests. I go to any length now not to seek medical attention
but have been keeping up with all the follow ups.
Blessings.

[brie41]

Hi Amocuatli,

  I also believe I have a mild form of Cryo.  My Doctor never tested for it but I have had minor circulation issues for years.  Numbness in hands and feet, worse in the morning.  Very sensitive to cold temps.  Mild Raynaud's, etc.  I had tested positive for RA factor and that is how they figured out I had hcv.  I treated for 8 weeks on Harvoni.  About halfway through I had shooting pain in the balls of my feet and toes.  I had a hard time walking for a few days, but it eased up and is just a minor annoyance now.  I also have lung issues, but that is from years of smoking and starting at a young age.  Diagnosed with emphysema at 30.  I quit smoking and for the most part my lungs are functioning well.  Hope it stays that way!!  Harvoni was such an easy treatment that we can only hope these are not lasting issues.  My Doctor said if I clear the hcv, the cryo will go away.  So far I am staying negative and the numbness is better but still there!!  Brie

[Baxter]

For what it's worth, I'll just toss out my own experience here in case someone else finds it useful.

I finished 12 weeks of Harvoni on about June 14, and had no apparent lingering effects in my immune system. However, at 7 weeks after treatment, I suffered a sudden and severe outbreak of hives that lasted several days. I had to go to the emergency room and get steroid injections; my entire body was completely covered in welts, to the point where I couldn't even open my eyes to drive the car. The episode began minutes after suffering several mosquito bites on my hands, and quickly spread up my arms, across my back and upper body, then my scalp, face, and lower body - all within 30-45 minutes after the mosquito bites. It was like the 3 or 4 mosquito bites just triggered a massive, systemic allergic reaction.

I've never had this happen before, and it was a full 7 weeks after the treatment ended. I don't know what the chances are that the Harvoni treatment caused any longterm effect on my immune system, but I'll throw it out there in case it means anything to anyone else.

[morab]

Something I am starting to give some thought to is reducing/removing gluten from my diet - at least for a while. David Perlmutter (MD), author of Grain Brain, says this on his FAQ on his website:

Question: Is it true that nobody can properly metabolize gluten?

Answer: It is likely that 100% of humans activate zonulin when exposed to gluten, and this increases gut permeability. This is thought to play an important role in autoimmunity.

Source: http://www.drperlmutter.com/learn/faq/is-it-true-that-nobody-can-properly-metabolize-gluten/

So it occurs to me that if HCV treatment and rapid clearing of virus has left some of us with temporarily overstimulated immune systems (from years of fighting an invader that is no longer there), then perhaps an additional autoimmune burden/provocation like gluten becomes a problem, even if we had no gluten issues before treatment.

BTW, I am now nearly 9 months post-treatment, and the post-tx problems I was having earlier are basically gone, apart from the fact that I cannot absorb or retain iron (which is a drag - I am still quite anemic). So the problems do sort themselves out and settle down over time. But I think anything we can do to remove stressors and burdens from our body will speed that along.

kim

Kim, I did have to stop eating gluten while on tx, as it caused me so much GI pain, I switched to brown rice pasta, found a gluten free bread and it helped alot. Now I am finding I feel much better when I stay away from gluten, back comes the GI issues. I had already learned how to cook without gluten due to my daughter in law is gluten in tolerant . It is not easy to do at first but once I realized how much better would feel without it, became a no brainer.
morab

[KimInTheForest]

Kim, I did have to stop eating gluten while on tx, as it caused me so much GI pain, I switched to brown rice pasta, found a gluten free bread and it helped alot. Now I am finding I feel much better when I stay away from gluten, back comes the GI issues. I had already learned how to cook without gluten due to my daughter in law is gluten in tolerant . It is not easy to do at first but once I realized how much better would feel without it, became a no brainer.
morab

Well,, I just ate a sandwich on a Portuguese bun. So I guess I failed my gluten free diet for today. It goes like that most days for me. It's true, I just need to find the substitute products like the brown rice pasta you mention. I am not aware of any GI problems or pain. But I don't think I am absorbing properly (hence my inability to increase my hemoglobin or ferritin no matter how many iron pills I take).

You were also mentioning your severe allergic reaction to mosquito bites at 7 weeks post-tx. One thing I was quite aware of during treatment last year is that I was reacting to mosquito bites as if they were wasp stings in terms of pain, significant swelling, and duration (like 3 weeks or more of misery). So I was quite convinced (and still am) that at least part of my own post-treatment problems is due to heightened histamine reaction that was caused by the drugs. Probably heightened inflammatory response in general due to treatment. So many maladies have inflammation at the base of them. So I am really looking for diets and whatnot to reduce inflammation.

good luck to all!
kim

[Wiglaf]

In response the OP's post: I looked at the daily journal  I kept on tx for Hep C. Two weeks after EOT unusual welts (10-12) appeared across my upper back and behind my upper arms. After ~four weeks, the welts started rotting and turned into a popcorn-like texture. I sharpened my long fingernails and excavated these weird growths. Twenty-nine people were in my group that went through Hep C tx together. Every two weeks we met in a conference room for a Q&A with our doctor. These welts were mentioned by several patients in the group.

[Lynn K]

Just for another prospective. I eat anything no food restrictions. Actually should eat better than I do too much processed food i.e. TV dinners or whatever the cafeteria has.

Bread, hot dogs, Big Macs and pizza but not near enough vegetables, or fruit, or water.

Plus a bowl of Cheerios with 2% milk but no sugar as a bed time snack.

But other than the fact I could stand to lose about 25 lbs I feel fine for 58 years old. No known allergies and mosquitoes don't like me (maybe because I am A negative?)

Really don't feel different than before treatment. Maybe more energy, maybe wishful thinking.

[amocuatli]

I have been clear of theHCV virus for at least two years now-- i have been having LOTS of problems -- the middle joints in my toes and hands have tendon problems, trigger finger, achilles problems, in the AM i cant walk. I have steatosis that happened AFTER I became free of HCV, something like mild Reynauds in my feet, and now ive been diagnosed with COPD-- i know that maybe nonevof this is related at allbut i cant help this sneaking suspicion that it is-- i had a resting heart rate of 59- 61 now it has shot up to 79. Does anyone have any experience with Cryoglobulinemia?? Im looking at maybe im having problems with residual proteins in my blood that are clogging up the works...please ANY INFO/experiences WOULD HELP

[morab]

This is morab here
I have just got my lab results back from my 4 week post tx, I have early signs of Rheumatoid Arthritis.......did I have it before tx? No idea if I did or not, but so many of my aches and pains from being on Harvoni were not present before tx. Below I have posted an article on RA, natural remedies and how it is an auto immune disease.
How many others out there are getting tested and showing positive to RA after treatment?
I would be curious to know if our excessive inflammation after tx is caused by taking Harvoni.....I am getting crabby along with my aches and pains
Morab   
Rheumatoid Arthritis: Natural Remedies?
I have been diagnosed with rheumatoid arthritis. Do you have any suggestions for natural methods of pain management or to control the disease?


A   
Answer (Published 12/13/2002)
Updated on 6/20/2005

Related Weil Products
Bone and Joint Issues a Concern? - The Weil Vitamin Advisor has herbs and supplements that address bone and joint conditions, as well as other health problems. Get your free, personalized Weil Vitamin Advisor recommendation today. Start now!
Rheumatoid arthritis is one of the most common autoimmune disorders, diseases caused by the immune system attacking the body’s own tissues. Autoimmune reactions may be triggered by infection, tissue injury, or emotional trauma in people with a genetic predisposition to them. Conventional medicine treats rheumatoid arthritis (and other autoimmune diseases) with steroids and other immunosuppressive medications, most of which are toxic when used long-term. Try to avoid these strong drugs if you can. Patients who are dependent on them are less likely to respond to natural treatments.

Lifestyle changes can moderate autoimmunity, and other strategies can help you control the symptoms of rheumatoid arthritis. Here are my basic recommendations:

Follow a low-protein, high-carbohydrate diet; minimize consumption of foods of animal origin.
Eliminate milk and milk products including commercial foods made with milk.
Avoid all polyunsaturated vegetable oils, margarine, vegetable shortening, and products made with partially hydrogenated oils of any kind.
Increase intake of omega-3 fatty acids by eating more cold water fish, walnuts or freshly ground flaxseeds. You may also want to consider taking a fish oil supplement to help keep your protein intake low.
Get regular aerobic exercise (swimming is best for those with rheumatoid arthritis).
Practice relaxation techniques. In addition, visualization can help moderate autoimmune responses, and psychotherapy can help you change emotional states that keep the immune system off balance.
Try hypnotherapy or guided imagery. Look for a therapist willing to take on an autoimmune disease. Meditation and yoga can help, too.
Avoid health care practitioners who make you feel pessimistic about your condition.
Eliminate or reduce intake of coffee and tobacco as both have been liked to an increased risk for rheumatoid arthritis.
Here are specific recommendations for rheumatoid arthritis management:

One at a time, eliminate the following categories of food for two months: (1) all sugar except natural fruits; (2) all citrus fruits; (3) wheat, corn and soy. At the end of each trial period, restore the eliminated items to your diet. You may find that one or more has an influence on your arthritis symptoms.
For symptomatic treatment use aspirin and other over-the-counter anti-inflammatory drugs.
Take feverfew (Tanacetum parthenium) for its anti-inflammatory effect; one to two capsules twice a day.
Use anti-inflammatory herbs. Ginger and turmeric are particularly effective. You can continue to take these herbs indefinitely.
Experiment with traditional Chinese medicine, Ayurvedic medicine, homeopathy, Native American medicine, and healers.
Try long-term fasting in a facility staffed by experienced health professionals. For additional information on fasting, check out www.dmoz.org.
Investigate apitherapy (bee-sting treatment); a local bee keeper should be able to advise you.
 Andrew Weil, M.D.

 Creative Commons License Some Rights Reserved Creative Commons Co

[Mugwump]

Just a thought on the matter. The liver is very important in the creation and moderation of many key aspects of body chemistry. Therefore those of us who are prone to immune issues may have had some functions that create immune reactions compromised by HCV.
Remove HCV and all of a sudden some immune issues that were already present suddenly become more prevalent. So the supposition here is:
Perhaps some of us that are already susceptible to issues like RA and other immune caused condition find that they become more active in an otherwise healthy liver.

It makes no sense whatsoever that DAA treatment by itself is causing these problems. But it does make sense that some of us that are more prone to auto immune issues can suddenly have them pop up after our livers no longer have ongoing damage that restricts the functions that cause the creation of the agents that cause things like RA and other auto immune diseases.

[morab]

Mug
We should have been given this information before treatment!
Especially, since the beginning of Harvoni treatment RA is happening to so many of us.
Google RA and Harvoni? And up pops and old post from a year ago about this very thing.
I along with many others should have had the information, so we could make our own decisions about treatment.
Not happy in constant pain
Morab

[brie41]

Hi Morab,

  I had blood work done before being diagnosed with hcv and I had a positive RA Factor.  I do not have RA, a little osteoarthritis, but not RA.  How did they diagnose you?  What symptoms are you having?  I also have tendon problems in my toes, but did have mild Raynaud's for years.  I think I had mild cryo from the hcv that was never tested for.  They told me if I get rid of the hcv, it would take care of the cryo.  I don't have as much numbness in my hand and feet and I am able to tolerate the cold a bit more.  Brie

[morab]

Hi Morab,

  I had blood work done before being diagnosed with hcv and I had a positive RA Factor.  I do not have RA, a little osteoarthritis, but not RA.  How did they diagnose you?  What symptoms are you having?  I also have tendon problems in my toes, but did have mild Raynaud's for years.  I think I had mild cryo from the hcv that was never tested for.  They told me if I get rid of the hcv, it would take care of the cryo.  I don't have as much numbness in my hand and feet and I am able to tolerate the cold a bit more.  Brie

Brie
I will find out more at my Dr. appointment on the 7th. They did blood work and I asked to be checked for RA. Got a call from the nurse saying that test was positive, so not sure what that means.
The worry is that I have the symptoms, and did not have them before treatment on Harvoni.
Not Happy
morab

[morab]

Thanks for your reply!  I'm just learning how to respond to this site.  I have been living on benedril every night, and also tried clarentin and zyrtex.  My eyes are the most annoying. My family practice doc referred me to an allergy doc, but feel certain I would have the same results as you , allergic to my life, and I'm so tired of doctors!  But if this continues I will do whatever.   I'm not really sure how to get my immune system back to par, I know things can get worse and I guess that's the fear I can try not to live in.  I hope like you it just resolves.  Thank you again!

Bestomy
My Primary Care Dr. told me to take the herbal supplement Ashwagandha to help boost the immune system.
Hope this helps
morab

[FutureThinker]

While I am very, very unhappy and concerned to read about so many of my fellow members having a rough time post-treatment, Mugwump has a valid point. As difficult as it may be, we need to try to stay objective as to the cause of what's going w/ our health.  We can't blame the DAAs on all of this, especially due to the age group the majority of us are in.  Fact is, many health issues crop up in the 5 and 6th decades. So it's difficult, both for us and our doctors, to be able to pinpoint causes at this stage of life. There's likely not just one answer.

That said, I do think there may be a link between these DAAs and an arthropathy trigger.

So, anyone who is having a bad post-treatment life with any of these drugs -- PLEASE be sure to let both Gilead (or whichever mfg. it is) AND the FDA know about it.  There's going to be a lot of new info coming out over the next few years on these drugs, based on OUR experiences, and we must help get all the issues out on the table for the researchers to tackle. This is part of our role as "pioneers". I know for some, this is not at all what we signed up for, all these issues post-treatment.  We all want to get back to a normal we've dreamed about for so long. But please take the time to relay any and all info to the appropriate parties so we can get this figured out. We are here to support you in the meantime!    FT

[brie41]

Hi FT,

 Well said!!  Brie