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Post Info TOPIC: Post Tx aches and pains


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RE: Post Tx aches and pains
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Welcome from me too.

Have you explored other possibilities of why you are not feeling well?

 

Thanks

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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Hi Patrick,

Welcome to the forum. Sorry you're feeling so lousy. Can you tell us a little more about yourself? If you could tell us a bit about yourself it would help us provide some opinions and advice. Things like your genotype, treatment, recent lab tests and the problems you're experiencing. Did you achieve SVR? Let us know what's going on, we might be able to help. 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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ended treatment 5-18-15,wish i had never started it!!headaches are worsening,fatigue is far worse than before treatment,sleep is just a thought,and to top it off the clinic here in muskegon is rife with incompetence and baloney.had i known side effects were like this i NEVER would have taken harvoni!!good luck to you all!



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Hi Tig, I tried to enter portal and it was an error page or something?  Marsha



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



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Cinnamon G. Thanks Greg



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I like your attitude, Greg!  smile

Yes, keep searching until you find the right doctor and the therapy that suits you best.  I certainly understand what you mean about side effects, although sometimes we have to weigh up the pros and cons.  Do keep in touch and let us know how it goes. 

Good luck!

 



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Jill 

(69 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Cinnamin girl, Thank you. Yes that Doctor took my money on the Prlo Injections. I will write him a note.

I'm seeing a new one that does deal with Fibro tommorow. If he won't look at me and listen I'll find another..

Yes your unsaid word were right Prolo ( For me ) is not a solution. My primary tryed to sell me cembalta but no, no more side effects for me. Thank all of ya'll for just being here. God has always brought me what I need. Part of that is ya'll. I'll let ya'll know. At my appointment half way through I'll ask the new Dr. what my name is if he knows it i'll stay.  This can't be all gloom and doom.. Batman aka Greg.



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Batman wrote:

Yes, arthritis in my back has taken everything, Batman.

Suggestions on anything that can help Insurance doesent cover prolo injections and a year out still seems progresive. Help.

Myalgia post treatment is worse than the virus any advise from the experenced . I walk 1.5 miles 5 times a week..Batman aka Greg. Austin Texas


HI Greg, sorry to hear you`re in so much pain with arthritis and myalgia.  You`re obviously doing all you can to keep yourself fit and active which I`m sure is the best thing to do. 

I don`t know what to suggest regarding the prolotherapy injections, maybe someone else will be able to add something.

Hang on in there, I hope you find some help. 



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Jill 

(69 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Thank you.



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Yes the meds seemed to hang on I'm one year post treatment 0 viral count. The damage done seems progressive. I am 15 sober I exercise drink water and Gatorade. I am also 60 . I wish these companies would stand up with advise, Myalisia pain is my complaint yes a progressive side effect. If i could afford a commercial I would warn the public of the damage to your skeleton and attaching tissues. The best I'v got was can I transfer you to our legal department. I want advise from a Doctor not a lawyer.  Any arthritic conditions be aware there can be severe side effects..... Besides that Mrs Lincoln how was the play......Any real Doctors out there?



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I started having pain and fatigue at week 8 of 24 harvoni tx. I have always drank what I thought was adequate amounts of water so didn't pay much attention to posts I had read about drinking more water. At week 14 (about 10 days ago) I started drinking an extra 2 litres a day of water and sure enough my pain and fatigue have greatly diminished if not left (I don't want to jinx myself but so far so good). I realize now it's not always dehydration that's the issue as much as detoxing of the Harvoni drug...which has a long 1/2 life so will still be present after tx for some time. In any event...anyone who has or has had Hep C or not would benefit from better detoxing that extra water provides...so it's a good idea to keep up with it after tx I think. Just make sure you have adequate electrolyte intake in your diet to replenish what you flush. It's worth giving a try and wish I had done so earlier.

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63 year old EOT 10-28-15,SVR24 April 21 2016  ALT-21/AST-28 July '18 - fibroscan 7.4



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Yes, arthritis in my back has taken everything, Batman.

Suggestions on anything that can help Insurance doesent cover prolo injections and a year out still seems progresive. Help.

Myalgia post treatment is worse than the virus any advise from the experenced . I walk 1.5 miles 5 times a week..Batman aka Greg. Austin Texas



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 I agree but lets wait until the.  The results of the many people. Whom started treatment in the last. Year. What we are seeing now is a whole bunch of people whom are considered. Cured and a huge Tsunami. Of. Others heading that way and as the insurance companies get there act togethet there eill be another. Agsin there a ton of dsta and publications thst describe exactly the issues mentioned but still blamed on this life saving medicine

ALlL medicine will have some affect on some people:. One has to condider agae etc 

Look at all the info as. Thst is yhe only way to. Get. The picture we all want:   i cal tell you chemo is not easy but i am greatfull the bep protocol existed as without it i wouldnt be hete..



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I just thought I would check in here and say, one year post Tx my muscle stiffness and other aches and pains have all but dissappeared. I feel better than I have for many years. The itching, insomnia, and uncomfortable ache under my right side ribs is but a faint memory. Hep C and thoughts of my early demise were always in the forefront of my mind. I was never comfortable making long term plans because I was never sure what turns my health would take. Now I frequently forget I ever had Hep C.
For those still suffering from post Tx symptoms I can say at least in my case it does get better.

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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



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Yes, arthritus in my back has taken everything, Batman



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Continuing to battle very sore shoulder joints (generally at the top outside bone). Sometimes sharp, but mostly starts dull and rolls into throbbing pain within a period of a few seconds then slowly subsides. And it's even more of a 'pain' because I sleep on my stomach. I have to work the joints in the morning even to get the limited range of motion I have. Forget scratching my back because I can't get my arms there without throbbing pain...tree bark works well, but never a tree around when you need one wink.

Doctor mentioned acupuncture and/or physio as a possibility. Has anyone who did the riba/peg/interferon tx, or otherwise, tried this and if so, did it yield any lasting results?

On the positive side, the limited motion is helping my golf game! biggrin



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60 yo, genotype 2b, started 28 week tx Sept.14, 2013. Triple Therapy (ribavirin, victrelis, peginterferon), VL 235k prior to tx, UND right through. EOT March 29, 2014. EOT24 Sept. 15, 2014 and EOT + ONE YEAR April 1, 2015 UND.... SVR!

 

Ro


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Rob, 

I understand where you are coming from, but I also believe that it is possible that some medications exacerbate conditions causing increased effects of the condition..therefore as the pharmacist at Gilead told me, "side effects of the medication can include exacerbation of symptoms Of existing conditions" Too bad they do not list it in the literature, because it is a side effect.

Ro



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Forlocos. Thst was the post i was looking for.the one with the link. About RA. My excperience with my hands going back a year or. Before diagnosed. My hands were ectremely painful. And i would have my girlfriend. Rub my knuckles for hours. Was about a year and one day it dissapered. I have not had the issue since. A few yesrs ago i even saw a specislist for RA. So i absolutely. Would believe this could have beem hep c virus...not the pill. I also have a bad lower back from years of airplanes. Several others on the circus. The same w several having surgery. I have hsd c spine sugery. Have bone graft plates. I took 90 pills and not once did i have pain. In my neck .my back yes but it was not the pill. Same things. That were there for years before I know first hand thst somones pain is there pain and i totally respect it... i just cant imagine this pill causing mass. Sciatica. Or degenerative. Disk problems so fast: if it were they pill they would certainly. Be all over the issue. As they are legally responsible. To do so. There is. The y already know they have in msny ways one of the biggest blockbuster drugs ever and another one right behind it: no way they would skimp or decive. They spent. 22. BIlLION. Dollars: Lastly i stumbled. On another. Site associated. With some we all know and respect.in reading her post right at trial many members were posting their. Bad back on the pill. Days sfter taking it. They were at feverish pace declaring the pill. Was responsible. It read to more like a hopefully lawyer. Looking for a potential class action gig to me For me the perspective. Was a few years. Back was when i started listing a whodt of issues. I had physically.he deadpanned. Me and finially he said....your not. 22 any more. He was right. Again i am not questioning how people feel. I wonder how in the last 90 days. People are now saying there are issues with this med when there is yet firm evidence. And everything. Points to the opposite.this drug is working exactly. As they said it would Peace

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basser wrote:

hi all.can relate to most of the post tx aches and pains. i keep reminding myself that this time last yr i was in the grip of the virus and could not imagine seeing this yr. tx was rough.and post tx has been bumpy. am feeling so much better this wk after being in hospital. just know that there is life after hep c. best of health to you all                                                                                                                                                                                                                                                                    william smile


 Hi William, just wanted to say I`m so pleased you`re feeling better this week after your hospital stay.

Take care, and all very best of luck.  Hope you`re managing to get out and enjoy this lovely weather we`re having!  smile



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Jill 

(69 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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hi all.can relate to most of the post tx aches and pains. i keep reminding myself that this time last yr i was in the grip of the virus and could not imagine seeing this yr. tx was rough.and post tx has been bumpy. am feeling so much better this wk after being in hospital. just know that there is life after hep c. best of health to you all                                                                                                                                                                                                                                                                    william smile



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16



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Our bodies have been fighting the virus for a long time, and maybe other problems were being held back too, as collateral damage. Is it possible that once the virus is gone and the fight is over, our immune system relaxes - - and other problems that were held at bay during the HCV battle have a chance to surface?  Just a thought...



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HCV Gen 1a diagnosed 2001; Labs 11/13/14: VL 1.2 million IU/mL, ast 88, alt 111. Harvoni TX 12 weeks.  EOT - 2/18/15, VL UND & normal ast/alt.

4 wks after EOT, VL = UND; normal AST/ALT at 4, 8 and 14 weeks after EOT.  15 weeks after EOT = Undetectable!

Tig


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Hey BJ, Ro and All,

I saw your suggestion of a thread to present personal information/insight to Gilead (and others) on the Harvoni protocol. Just so happens that Matt started one yesterday and you might be interested in adding your two cents. It could be very informative to all interested.

http://hepcfriends.activeboard.com/t60384058/reflections-on-harvoni-before-during-after/?w_r=1434588149#lastPostAnchor



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Brian

While doing my clinical trial not many questions were asked during the trial to be submitted to the pharmaceutical  company.  While on the trial, I began to have stomach pain and it has continued to now--over a year later. I am having medical tests now for the pain.  I do notice muscle pain I did not have before my trial. I had tests before being allowed on the trial.  Most people that were allowed on trials were healthy.  Since I had few symptoms of Hep C before my trial (like many seemed to have) I am hardly a copy cat of other people's pain.  It may be that this group of drugs do cause symptoms post treatment for some people--and, oddly, the pain seems to be similar. These drugs are a new set of drugs and they may cause post treatment symptoms that were NOT recorded in the small group that did clinical trials.  I did know that I was on a clinical trial--that the drugs were new--and that there was only a little bit of information regarding the use of the drugs or possible post treatment problems. Drug companies DO NOT have extensive data on new drugs either. If you watch commercials, you know that many widely used drugs are having post treatment symptoms that were not recognized in the early days of these drugs. 

So, I do agree that ongoing symptoms should be reported to the drug company.  Maybe they can find out why and eliminate the cause. 

Of course, every symptom I have could be caused by old age but I am only one year older.  No need to discuss the alternative to old age LOL.

SuziQ  



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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR



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I am certain Gilead. Knew exactly what they had in this medicine long before we came. And fast track by regulatory approval supports that. I am sure that there werent anything like "can cause cancer etc that we see on so many inserts My opinion

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I had joint pain before. I dont habe it now.. i had lowerbavk pain fron year's my hands are like newnow . Of airplanes. I still have lower back pain now. I had cramps in my legs before when dehydrated. I have then now when dyhydrated. I drank water they go away. It is common. When being treated for some heavy. Things. Like lets say cancer and the dr says. You will have s little. Of blank condition. And it wasnt long everyone else did too Many drs will tell you thst in med school , say they were lesrning about hives, the whole class would end up in vlinic and the all thought they had hives... I dont know a pill that causes lower back pain. Unless kidneys. Bladder infection or something like that so i wonder how Harvoni could causes. It.? I have not hesrd or read that this was an issure. Anywhere. The arthritis. Hand thing. Along with past treatments of old,may jave some merrit..sounds reasonable Also dont dissmiss ptst.. happens to cancer people quite often Although for me and i am sure others who had a very easy treatment i could see this being a traumatic experience. To many I think it is very importsnt to report obvious side effect issues to Gilead Carefully for the people coming after us: Just my opinion Peace

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I made sure to report my leg and foot cramps to not only Gilead but the FDA.  You can do so on their website.  While it is better than during treatment I seem to have been left with restless legs at night often.  Tossing and turning, so annoying.  I am four months post treatment and I am better with the fatigue and achiness but have joint issues and things that I never had prior.  I figure time will tell how it plays out.  I am happy to have been treated and hope for a great future.  Make sure to please report any and all issues Gilead and the FDA.  I can't understand how Sovaldi can have a long list of side effects and Harvoni has two! 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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Sorry for repeat, operator errorhmm     <I too wish there was a "like" button. Ditto> 



-- Edited by coolheat on Wednesday 17th of June 2015 02:25:52 AM

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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



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I too wish there was a "like" button. Ditto



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



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You're Funny,     seriously if you have a massage therapist, sounds like a little sciatic work wouldn't hurt.  Get that out of your,   a stretch after getting up is good too.  I would also think the makers of Harvoni would want to know all about what people are experiencing.  Like don't tank the stock, I mean train now, its just really rolling. Nice hearing back from you. I'm looking forward to being able to hike and get out in the mtn.s too.   Coolheat



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



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Your right shadow cats. Start a thread with post treatment side effects. My pharmacist went so far as to say we are ginea pigs as the first line of treated harvoni-ites. There is obviously going to be things happening that weren't predicted, and having them documented, at the very least, will tell other post treatment people what they might expect.



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



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Dear Coolheat please come to my house and give  me a massage :)

I have to agree that often the thing we don't feel we can do (like exercise) is the one thing that will help us feel better.  whether its stretching the muscles to loosen them up that helps or the endorphin high from exercising.  i know that once i get myself out in the mountains  hiking i feel awesome.  i have said so many times over the years that after about an hour of hiking i don't feel like a sick person at all!  

However I am having a difficult time with this back pain.  it is just awful when i first get up. sometimes i literally have to roll out of bed & can't stand up straight.  And as anyone knows, pain really drags your motivation down too. i can not remember the last time i woke up and felt half way decent. and you get sick of it and it messes with you big time.

i do want to be perfectly clear i do not regret taking harvoni & would take it again but i want to get past this and i am disappointed i don't feel better.  i know at work that people never really saw my Hepc as a health issue. I don't know if they simply didn't believe i had it or were just ignorant on how devastating it could be.  now that i am back to work it's like they expect me to be this superwoman and i am just not even close to that.  i know my boyfriend is disappointed also as he was hoping to have his ol girl back!

To Ro:  i think that Ro has an excellent point that we should tell Gilead about this stuff. If there is a link to the disease, the drug, the drug killing of the hepc; whatever - i'd want them to know so they can look into it and maybe provide some info on the outcome of these post treatment issues.  maybe we should start a new thread and have people list their stats such as: name, age, pre treatment diagnosis, treatment protocol, results & list all issues they had before & now & anything suspect.  yes i had lower back pain before but never ever like this. so what's the link? if we could do a thread like that & not get into discussions so much just keep it more stats then after it's been up for a month or so we could forward to Gilead or just give them the link to check on it for their own information.

whatcha all think about that?  eyepopping.gif



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Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 



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Hi shadow10cats, read your post. Sorry you are having such pain.  I also have a osteo-arthritis in my hips and sacrum, + degenerative disc disease. Terrible pain, they had put me on some pain meds, not good idea for this person. Have found out that if I go to gym and strengthen core and glutes, and hip flexors it has helped the pain. I stopped going to gym, and my BP has gone up and am having some pain again in the sciatic area's. Will go back to gym and do some easy stuff and slow tread mill to keep it all loose and BP down.  Happy you are post and clear. As a massage therapist, I am aware that some drugs, lots of our clients have been on chemo and they have had us help push the drugs out of the tissue. Some drugs won't leave the tissue without being prompted. It also feels better moving any lingering inflammation out of already inflamed areas.  I am not a Dr. and speak only of our 17 years of therapeutic and deep tissue massage experience.  Marsha



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65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED

Ro


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BJ,

we are on about the same timeline for Harvoni..and near the same age

it is now 2 months for me and I have intense mid back paincry towards the end of treatment I had some kind of flare up that MD thought was gout, but it was not ...I had contacted gilead and they said there were no other complaints at that time of joint or back pain  they were logging my symptoms to keep track of any side effects...being we are the first go around on this treatment.. Maybe you should call Gilead and let them know.....

All signs say I am SVR.   My varicies are better, but the joint pain is awful... I slept on the floor one night because it was the only way I could get comfortable

hopong we find some pain relief!

ro



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I posted this same stuff on another similar topic but then saw this one. so sorry about the repeat...

About 2 mos post treatment. Haven't posted in a while bec I have been having some issues with fatigue and raging lower back pain. I know I have arthritis; degenerative disc disease but it never bothered me as much as it has now. Sure Im older but for crying out loud this is just ridiculous. I wake up in the morning in pain or should I say the pain wakes me up. I've actually had dreams that I'm being hurt or shot or stabbed in my lower back but it's just the pain in my lower back taking effect on my dreams.  How crazy is that? Could it be that the Harvoni has something to do with this flaring up so badly?  I don't know how since I'm off it.  We even went out and bought an uber expensive mattress to no avail.  Really kind of sucks that big wazoo. It's a beautiful day today and I picture myself mountain biking or hiking - Have these beautiful spots in the Adirondacks that I want to be but hiking is grueling and my lower back isn't allowing me the pleasures. I haven't posted bec I didn't want to be negative or scare anyone who is starting treatment.   Don't get me wrong I am so happy and thankful to have that dragon off my back and would do treatment again in a heartbeat to be rid of it.  As this thread indicates I am not alone which at least lets me know it's not in my head. But I gotta say I have never felt such horrendous pain before.  Thankfully it is worse in the morning and will subside somewhat about mid day so I feel like being a bit more active. Hopefully it will subside and my body adjusts to not having the "dragon" raging thru it.  .

 



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Diagnosed 10/04 / VL 12.7 M / Genotype 1b - Grade 2, Stage 1 / 2007 -Pegylated Interferon & Ribavirin - Stopped Due to Sides / 2011 - Telaprevir, Interferon & Ribavirin - Stopped Due to Sides / APR 2015 - COMPLETED HARVONI So Far Undetectable :) 

Tig


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Hi Sofi,

It's nice to hear from you again. I'm sorry about all of the ongoing problems though. We have been hearing some complaints from members recently, especially the leg discomfort and some back pain, but some have minimal or no problems at all. The diagnosis of reactive arthritis explains some of the pain and mobility issues. I guess the bright side is that you're seeing improvements of late and I hope that continues. I think there's much to learn about these new protocols.

Your other news is wonderful. Still undetected, WOOT!! I know that put a =) on your face. Hearing news like that never gets old. I hope you keep improving and enjoying your SVR. Take care and good luck....



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi all, I finished treatment August 2013. I was on the Ion 3 trial which was what is now called harvoni. I also had ribavirin. Anyways, my legs have been a nightmare. And I have felt so alone. My doctor thinks I'm crazy. I'm 37 and my mobility was severely decreased. I still have pain and swelling in knees and ankles (plus plantar fasciitis and hypothyroidism which I had none of this before the trial) but I am better. I can still have bad days where I hobble and limp but am way more active than I was. I exercise daily and went from being only able to withstand a half mile walk (and slow) to now over two miles (and fast!). Hopefully this will go away. The rheumatologist diagnosed me with reactive arthritis. I don't have anything to offer but reading this let me know I am not crazy and that the medicine did indeed do this and that it's not conversion disorder (aka hysteria). And my doc recently checked and I am still undetectable. I am very grateful for that. (Those who know me from the ion 3 trial thread, I am mentally and emotionally better now too. I had side effects from hell!) Good luck to all, Sofi

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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)



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Thank you for the info. I too have finished my Harvoni txt. At week 3 into 4 EOT my arthritis came back with a vengeance,  I also have headaches sometimes but not every day. I hoping week 5 starts off better.

I also tested undetected after 8 weeks and prey and hope for all of us here.HAPPY VALENTINES! !!



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Tig


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Hey 4L,

I want to thank you for sharing that link! I found it very interesting considering it pertains in part to the old SOC's with Telaprevir and Victrelis. I do believe as the article and Barnacle mentioned, SVR may be an answer to the arthritic conditions (joint aches and pains) we share. It has been over a year EOT for me and those issues have been severe at times. Fortunately the Naproxen I was placed on has helped and I've been able to start reducing the dose. I'm going to accept that as a sign that the problems are diminishing as time goes on. I believe we call that a big WIN for SVR. Let's continue to look forward to better days and good news that articles like 4L has provided!

Tig



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Thanks fourlocos, the article does suggest improvement can happen after successful treatment.

My symptoms feel worse post treatment but I have come to believe it's because everything else feels so much better, I just notice the stiffness and aches more.

 



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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



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I found this when I was exploring my constant aches for over 20 years now.  

http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/hcvassociatedarthritis.asp



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!



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Is anyone experiencing a reduction in symptoms with this or is this something I am going to just have to get used to. My Dr thinks my aches and pains are just age but I didn't have this before Tx and I am worried about what damage anti inflammatory drugs can do to my already damaged liver.

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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



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Thanks Malcolm. That's good to hear because usually I have flare-ups that are short-lived. I'll give it a try. I also take Magnesium on a regular basis and it alone completely stops the killer cramps I used to get at night. 

Happy golfing!



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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.



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Hi Rubye,

I did take Mobic (15 mg) for about 4 weeks when I still had muscle and joint aches and pains. I'm pretty sure these were all Interferon related. These have now mostly gone.

It's very hot and humid here, and yesterday I took a Mobic (7.5mg) and magnesium tab. before golf. Keeping the fluids up is obviously important, so I probably drink about 2 litres of fluid during the round.

Mobic works immediately and there is no problem using it in small spurts. You need to take it with food and I don't worry about the slight damage it may do to my liver.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Malcolm, I saw that you were taking Mobic earlier and am wondering if you have needed to take it over the original month you intended.

My rheumatologist prescribed it for me a few months ago but I've been afraid to take it because of what it might do to my liver. However, I am at a point now to where not only are my knees giving me a hard time but also my hips and neck. I have CPPD Disease (Psuedo gout) and since I finished S/O tx I can hardly walk more than a block or two. 

Does anyone know if Mobic (meloxicam) works with one pill like naproxen does or do you have to wait for it to build up in your system before it starts working? I've also sent an email to the doctor but I would like to take one today and know I won't hear back from her for 2-3 days.

 



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UNDETECTED 5/4/15 - 16 weeks after EOT, 1st treatment - Sovaldi and Olysio, Geno 1a, 67 year old with compensated cirrhosis, over 40 years with HCV.



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My wife was researching causes of these aches and pains, as unrelated to Hep C but said I was the poster boy for vitamin D deficiency. If that was the case fish oil would likely help. I am taking supplements and believe I am improving already

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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!



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Hi Duane,

Good luck with the research into fish oil! There are so many articles, but few from accepted sources.

I've got no idea whether fish oil is beneficial. I no longer have joint pain or stiffness but this may have nothing to do with my fish oil ingestion. Perhaps it is helping resolve my liver fibrosis?

I was told the main ingredient is the DHA component- mine is 250 mg, which is in the accepted range. I'm sure big doses (>1gm) may be a problem. Also you need to take the fish oil with food, to combat any bowel irritation.

For you, with low platelets, it may not be a good idea, as bleeding tendency is one of the 'side-effects'.

My fish oil does not contain Vitamin D.

I assumed your PCP was like a GP here- few have any detailed knowledge of liver disease.

Good luck mate.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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mallani wrote:

Hi pamelajean,

Not sure how we got on to Vitamin D. Vitamin D supplements are indicated if your blood levels of Vit D are low. You increase the dose until your blood levels are normal. There's no doubt that some HCV patients tend to have low Vit D levels, and this is not good for liver fibrosis.

Duane, I was told Fish Oil is OK in cirrhosis. However, in your case, be guided by your Hepatologist, not your PCP. Cheers.


 I don't take fish oil at all, vitamin D I do take, but only 400 iu/day and living in the upper mid-west we are prone to low D levels as a result of environment  (meaning we lack exposure to sunlight because we are bundled up for about 6-8 months of the year)no

My PCP is actually more than that, he is specialized in adults with chronic health problems like mine....which is why I transferred to him, my hep doc is the one that actually suggested taking some D to see if it would help with stiffness and aches and pains, and my PCP was the one that said that like any meds taken by cirrhotics it needs to be monitored because of poor clearance issues, and he also said that unlike vitamin C or B where excess is excreted thru urine vitamin D is not and actually can stack and you can obtain toxic levels....of course at only 400iu/day that is unlikely, but if i was taking say 1000+ per day this would be a concern to him....I believe he said fish oil is similar.....great ! now my brain is thinking it's time for some googling to see what I find.

Either way thanks for the response Mal.....

Duane 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Hi pamelajean,

Not sure how we got on to Vitamin D. Vitamin D supplements are indicated if your blood levels of Vit D are low. You increase the dose until your blood levels are normal. There's no doubt that some HCV patients tend to have low Vit D levels, and this is not good for liver fibrosis.

Duane, I was told Fish Oil is OK in cirrhosis. However, in your case, be guided by your Hepatologist, not your PCP. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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I'm not sure I agree with your doc....or mine. I've been taking 5,000 IU of D3 since shortly after dx and that included during tx with S/O

Vitamin  D  Healio Link

Risks for advanced liver fibrosis and odds for achieving sustained virologic response were affected by vitamin D levels in patients with hepatitis C virus who were taking pegylated interferon-alfa with ribavirin in a recent study.

Researchers conducted a meta-analysis of 14 included studies published from 2011 to 2014 after a literature search of PubMed, Scopus, Lilacs and Cochrane Library databases. Seven studies focused on vitamin D andadvanced liver fibrosis (ALF) in treatment-naive patients with chronic hepatitis C virus (HCV; n=1,083), and 11 centered on vitamin D and its relationship with patients with chronic HCV who achieved sustained virologic response (SVR) with pegylated interferon-alfa plus ribavirin (n=2,672). Four studies were examined in both analyses.

Data indicated that almost 70% of all patients had 25-hydroxyvitamin D(25[OH]D) levels that were considered suboptimal (<20 ng/mL or <30 ng/mL), and almost 50% of the patients displayed deficient levels of 25(OH)D (<10 ng/mL or <20 ng/mL). Greater suboptimal levels of vitamin D were observed in 82.7% of patients coinfected with HCV and HIV vs. 66.2% among patients with HCV.

Vitamin D status was associated with ALF, including cut-offs of 10 ng/mL (OR=2.37; 95% CI, 1.20-4.72) and 30 ng/mL (OR=2.22; 95% CI, 1.24-3.97). In the SVR studies, pooled ORs showed an association between cut-offs of 20 ng/mL and SVR for patients when a specific HCV genotype was not stratified (OR=0.53; 95% CI, 0.31-0.91). Heterogeneity also was observed across the SVR studies (P<.001).

This meta-analysis shows that a low vitamin D status in CHC patients is associated with a higher likelihood of having ALF and lower odds of achieving SVR, suggesting the utility of vitamin D screening in HCV-infected patients, the researchers wrote.

Disclosure: The researchers report no relevant financial disclosures.

 

 



-- Edited by pamelajean on Friday 5th of December 2014 08:40:12 PM



-- Edited by Matt Chris on Thursday 15th of January 2015 04:46:48 AM

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mallani wrote:

I'm not much of a fan of supplements etc.

However, my Rheumatologist said he takes fish oil. I thought that was good enough for me, and I've been taking it ever since. Perhaps it helps. You do need a decent dose, ~3000mg of Omega-3 per day.

I've also started taking a Magnesium supplement, when I'm playing golf on a hot day. It's said to reduce muscle cramps and spasms. It seems to work.

Pilates is also said to be the best way to stretch ligaments, muscles and tendons. All my golfing mates do it 3 times a week. I'm not that desperate yet. Cheers.


 Interestingly my PCP told be to be careful with fish oil and vitamin D being a decompensated cirrhotic and that you can build toxic levels due to clearance issues? Any comment to that ? Thanks

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.

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