Author Topic: Joint and Muscle pain anyone? (Read 43682 times)

Kim · « **on:** March 04, 2015, 06:28:56 pm »

Hi there, I am finishing week 8 of Harvoni, and besides the headaches and fatigue, I am experiencing leg and hip pain. Sometimes I also feel achy like I am getting the flu. All symptoms are variable and transient - everyday is not bad! My viral load is
undetectable after 2 weeks of therapy, so I am encouraged!

Lukey · « **Reply #1 on:** March 04, 2015, 07:08:34 pm »

Are you drinking enough water?

Congrats on the Und status. I am too.
I just finished 8 weeks yesterday.
I'm all done Harvnoi for now, maybe forever.

lovinglife · « **Reply #2 on:** March 25, 2015, 07:49:13 pm »

Reading more and more wonderful news on here !!!!

SIXFOOTFOUR · « **Reply #3 on:** March 26, 2015, 01:56:50 pm »

Ive been the opposite, on and off for the past 20 years Ive had transient joint pain always there but sometimes very bad. Im also a post cervical injury patient so i deal with chronic pain and the doctors and I both always associated it with the injury. But within 7 days of starting Harvoni a big portion of my joint pain (hands, forearms and hips) has diminished and my overall energy is better.

sisterbland · « **Reply #4 on:** March 29, 2015, 08:59:43 pm »

Hi Kim,
I am having hip/groin pain on the left side and today is day 12 on Harvoni. I don't know what it is, or if it is related to the drug, but taking ibuprofen and drinking lots of water hoping it will pass.

Barbara Marin · « **Reply #5 on:** April 05, 2015, 09:03:13 pm »

I am having the worst knee pain I've ever had. I also have muscle pain in my calves. My left hip/groin is painful (which it never has been before). Also shoulder / rib pain. These are very powerful drugs which are able to defeat this nasty virus. It's no wonder there are sides. Now someone has to tell the doctors!!!

Kim · « **Reply #6 on:** April 05, 2015, 09:30:28 pm »

I am now EOT as of yesterday and still experiencing leg and hip pain, and especially left wrist pain bad enough to warrant a wrist splint. I may go to have my wrist looked at if it does not improve soon.

crazycanuck · « **Reply #7 on:** April 07, 2015, 01:41:10 pm »

Quote from: Barbara Marin on April 05, 2015, 09:03:13 pm

/
I am having the worst knee pain I've ever had. I also have muscle pain in my calves. My left hip/groin is painful (which it never has been before). Also shoulder / rib pain. These are very powerful drugs which are able to defeat this nasty virus. It's no wonder there are sides. Now someone has to tell the doctors!!!

I agree tell your Dr. I am on my 12 day of treatment and went to see my Dr. and explain all the symptoms associated with this medicine. He looked at me like I was making this up and kept saying we don't have enough data to know all the side effects. I found him to be not very helpful and I feel so alone in this. But it does make me feel better knowing I am not crazy and that other people are having the same effects like the joint, shoulder, rib pain and overall feeling like crap.

Kim · « **Reply #8 on:** April 07, 2015, 04:18:27 pm »

My GI MD looked up all the literature he could find on Harvoni and says there is no reported medical evidence - so far- to back up my complaints. He said my symptoms are unrelated to Harvoni and referred me to a Rheumatologist to rule out RA. Great...

crazycanuck · « **Reply #9 on:** April 07, 2015, 05:55:25 pm »

Quote from: Kim on April 07, 2015, 04:18:27 pm

My GI MD looked up all the literature he could find on Harvoni and says there is no reported medical evidence - so far- to back up my complaints. He said my symptoms are unrelated to Harvoni and referred me to a Rheumatologist to rule out RA. Great...

Well I can safely say we are experiencing the same symptoms so I would hold off on seeing a Rheumatologist!!! I just don't understand how the drug company Gilead Momentum can get a drug approved and this drug undergoes these clinical trials for years and still don't know overall symptoms!!!!!?

I don't get it. I truly hope these symptoms let up for both our sakes. Take care of yourself!!

liveroflife · « **Reply #10 on:** April 07, 2015, 09:19:57 pm »

I'm on my seventh week of Harvoni. I do have rheumatoid arthritis. ..have had it since I was 14yrs old. The Harvoni has caused my RA to flare up big time. My liver Dr said to basically bite the bullet. Sorry for your pain. It sucks.

MEG · « **Reply #11 on:** April 08, 2015, 02:30:56 am »

This is just a guess:

I'm wondering if during the trials, enough people were terrified of getting pulled from the trials if they reported side effects---just tonight after reading a bunch of posts here from people being upset at being told that their side effects were not or rarely reported during the trials--- I lurked on and off on a board for people on the Ion trials...I did see posts from people explicitly saying that they were too scared to tell the doctors of anything bad but tolerable for fear of getting taken off the trial....

Anyone have thoughts about this?

Or is it that of the many folk taking Harvoni right now, those of us who post here are motivated to do so because we're experiencing the side effects....a self-selecting bias that makes us think that everyone is having these effects when, overall, we might just be the small %age?

Thinking out loud here.....

Lynn K · « **Reply #12 on:** April 08, 2015, 02:47:53 am »

As a good and compliant trail participant it is your duty to report sides. However they may not be in the same demographic as many of us probably younger and definitely with less liver damage than folks like myself with more advanced liver disease. They only tested with a small pool of more ill patients.

When I treated last year with solvaldi and olysio. I did notice some joint pains in joints that had already been bothering me a little before treatment. So maybe sovaldi accentuates existing minor joint pain into something more. But anyway whatever it was it resolved after I finished treatment. I haven't noticed the same this time with Harvoni and Ribavirin.

But I do wish doctors were more open to the possibilities that since there were only limited numbers of people in the trials once a new med is available to all different types of patients additional issues can come up and just because something was not experienced in the trials does not necessarily mean it might not be the Harvoni.

good luck to all

MEG · « **Reply #13 on:** April 08, 2015, 03:08:09 am »

@Lynn

Quote

As a good and compliant trail participant it is your duty to report sides. However they may not be in the same demographic as many of us probably younger and definitely with less liver damage than folks like myself with more advanced liver disease. They only tested with a small pool of more ill patients.

Excellent point, Lynn.

I'm praying daily that I've been experiencing has been a heap of bad luck re: the severe fatigue/constant colds...

I saw in another thread that you are really down the homestretch. Praying for you, Lynn. You're such a valuable person here....we all benefit so much from all that you offer us...thank you.
Meg.

Lynn K · « **Reply #14 on:** April 08, 2015, 03:14:37 am »

Thanks Meg

Yup started bottle number 6 today.

I have 27 big ol coral colored diamonds to go!

Waiting for Cinco de Mayo arriba!

BubbaT · « **Reply #15 on:** April 08, 2015, 12:54:43 pm »

Hi all ,

I am in week 5 and noticing pains in joints in legs, and yesterday I had an awful day,
I have some Small blisters on my fingers, on both hands, It looks like a allergic reaction, and my hands are swollen, last nite I took one Tylenol for headache and at 3 this am woke up with chills, and pain in my liver on both lobes, stayed home today, wasn't up to working..
The pain in my liver has been the worst so far in tx. So I would count this as a side effect possibly from the Tylenol, since I started Harvoni I have only taken 1 -500mg Tylenol last nite at 7. I have taken no other drugs or herbal supplements.

The headache has been manageable because of the extra water I take.
The little tiny blisters are not itching on my fingers.

Has anyon had a similar occurrence?

MEG · « **Reply #16 on:** April 08, 2015, 02:55:50 pm »

@Lynn

What a lovely description of our hero in a bottle. ;-)

I hope you're having a peaceful day...
Meg.

Kim · « **Reply #17 on:** April 08, 2015, 06:26:36 pm »

I too have had swelling in my fingers, but no blisters. Have you taken any benadryl? All I know is that Harvoni causes very strange side effects that the MDs know nothing about!

BubbaT · « **Reply #18 on:** April 08, 2015, 09:17:49 pm »

Hi Kim,

I haven't taken Benadryl because I'm concerned with the effects of other drugs with the Harvoni. The hands and blisters are slightly better tonite.

I have fever and chills and had to get some thermal clothes to get warm, with a slight headache , today was not a good day. For me, the aches in my legs are very noticeable. And I'm resting trying to feel better, at this rate not going to work tomorrow either. There are definite side effects to Harvoni, some are worse and some come and go, I hope to get better soon.

Barbara Marin · « **Reply #19 on:** April 08, 2015, 09:56:50 pm »

My palms of my hands have gotten into a dry peeling mode which sometimes stings when wet. My joints and muscles were the worst part of this whole ordeal. I had cortisone shots in both knees 3 days ago. Walking is much better now. I have 16 days to go on my 12 week treatment. It's been a difficult potpourri of symptoms including waking up wide eyed at 4 this mornng. I was undetectable at 8 weeks and am feeling so hopeful about my new lease on life. Focusing on the end game is the best I can suggest to those of us with bad sides. I'm still a hurtin' but trusting that these pains will go away. Hang on n there!!!

MEG · « **Reply #20 on:** April 08, 2015, 10:44:49 pm »

@Barbara Marin

Quote

Focusing on the end game is the best I can suggest to those of us with bad sides. I'm still a hurtin' but trusting that these pains will go away. Hang on n there!!!

Couldn't agree with you more, Barbara. And this is a wonderful group of people to help each other on those days when self-encouragement gets tough...

Re: your hands. My doc told me to stay well hydrated and also well moisturized---I use coconut oil all over after I shower. I'm not sure if that's helped but it sure feels good...

Wishing you much healing and a quick zip to the finish. I'm now 13 days away(of 12 weeks)....YES.

Kim · « **Reply #21 on:** April 21, 2015, 11:18:15 pm »

I went to a rheumatologist today and he is not at all surprised by my complaints...says I have Arthritis caused by the Harvoni and my joint pain should subside in 16 weeks...gave me Naprosen to take and wrist splints for my painful wrists. Who knew this would happen? But my LFTs are normal now, and just waiting for the 2 week post EOT PCR results.

Gittin Cured · « **Reply #22 on:** April 22, 2015, 09:09:13 am »

Hey All,

Just starting week 3 of Harvoni, staying well hydrated, but still experiencing almost debilitating pain in my right thigh and hip, alternating acetaminophen and aspirin, so far has held it in check enough to function. It is not a joint pain, so I am not thinking RA, trying to remember if I did anything that may have caused the pain. Worked in the yard all day the day before the pain started so I am not certain it is related to the drug. Will keep monitoring and checking in with y'all to see if anyone is progressing the same.

Thanks everyone.

Tpropane · « **Reply #23 on:** April 22, 2015, 10:22:27 pm »

Hi There All of You,
I too am finding previous knee pain that was tolerable is now becoming debilitating. Not just the one knee but now both. And my joints in my toes have been killing me. I thought it was gout. But doc says no. Even one of my toenails looks bruised at the base. Never had this in my life. Still some liver pain. The heating pad helps the liver pain. Alternating ice and hot baths help with the knees. But now I'm really hobbling. Have a cane. But hate to use it. Makes me feel old.(I'm not!) Still fatigued and some headache.
I wake up with a headache. And yes I'm drinking tons of water. 4-5 liters a day.
Sorry to moan and groan. thanks for being here...

Week 13 down. It feels like a wednesday. Half way through.
Tpropane

Barbara Marin · « **Reply #24 on:** April 23, 2015, 01:57:47 am »

Hi there Tpropane,
How great that you're responding t the Harvoni so well. Your description of both your knees exactly mirrors mine. I had a cortisone shot 2 weeks ago and it helped a lot. I've been walking with ease, but the left Knee is gradually getting bad again and I went down stairs sideways today. I have only 2 days left on the treatment and am hoping the pain will level off. Found out today I have cirrhosis.

Espo2 · « **Reply #25 on:** April 28, 2015, 07:14:02 pm »

Hi everyone, I have been blaming joints on rain, barometric pressure etc. hip, ankles, hands, wrists. The past ills came back at once, along with high blood pressure with nose bleeds. Yey! Drinking lots of water. Hoping the pain leaves sometime this year. Week 7, undetected. Feel old and cold!

koifish54 · « **Reply #26 on:** May 06, 2015, 08:56:06 am »

I just finished 12 week treatment harvoni at 3 weeks all joint pain an stiffness gone pretty much at week 10 started again I have been UD since wk 4 having blood work this Friday hope UD I do have hasimotos which can also cause stiffness and joint aches my anti thyroid antibodies are 100 should be 9 called gileads, specialty pharmacist, and dr office they said not harvoni sx Ok so I asked if hcv can cause autoimmune stuff they when you clear it then what happens. No one had a clue

dragonslayer · « **Reply #27 on:** May 06, 2015, 09:16:55 am »

I was experiencing pain in the inside and outside of both elbows, that would radiate down the forearms for a year prior to treatment... During treatment and after, it disappeared! I had thought it was caused by tendonitis as it mimicked exactly the symptoms of whats called Golfers elbow and Tennis elbow with the former being on the inside of the elbow, and the latter on the outside. I do weight training and also ride a motorcycle and thought it might have been caused by those activities as is sometimes the case.

But after hearing about the connection to HCV, Im beginning to think that was the cause or, at least, a contributor. Im reluctant to blame it on Harvoni because as the viral load decreased, so did the elbow pains.

Of course, its entirely possible that it WAS caused by tendonitis that stemmed from squeezing the bars to tightly and/or from straining from the weights..

sabre · « **Reply #28 on:** May 07, 2015, 10:41:14 pm »

I don't have muscle pain, but I had a gout attack in both feet and an ankle roughly six days after beginning Harvoni on 3/28/15. I still have a lot of pain in the toes on my right foot and a lesser amount of pain in the left foot. A lot of stiffness when I first wake up in the morning as well.

Whether it's attributed to the Tx or just coincidence, I can't say. It's a bit annoying, but otherwise, I feel great.

Wishing everyone the best.

Kim · « **Reply #29 on:** June 09, 2015, 09:25:30 pm »

So I had to have a cortisone injection in my left wrist and wear a huge splint for several weeks. The MD thinks this is a reactive arthritis to the Harvoni Treatment. I am still having minor muscle pain in my legs. Hope all this goes away - I am 3 months EOT now!

Tpropane · « **Reply #30 on:** June 09, 2015, 09:39:23 pm »

July 15th will be the end of my 24 weeks on Harvoni. Praying and hoping that I've slayed the dragon for good. My knees, (both) are still killing me. As I said I had previous knee pain and arthroscopic surgery on my right knee 2 March's ago. But now it's both. Had my hip replaced in 2005 and it is fine. Sort of purple feet, occasionally. But the knee pain, (still hoping and praying) will abate some after I finish my treatment. Still some liver pain. But I have cirrhosis...
Low energy and I've become used to a constant headache. Yes I drink 3-4 liters of water a day. I'm never without my stainless steel water bottle filled with filtered tap water. (never plastic, never ever.) Hoping and praying.For SVR!
All the best to my peeps!
Fighters of the fight.
Tpropane

CHepCFree · « **Reply #31 on:** June 13, 2015, 01:03:03 am »

Take a look at www.gilead.ca. They have a long list of side effects that I have not seen. Joint and muscle pain is listed. There is also heart palpitatons listed, which many of us have or are experiencing but is not listed as a side on the US information. If anyone wants a copy of a 200 page report I secured from the FDA with side effects reported, please message me.

saydey · « **Reply #32 on:** June 13, 2015, 03:06:19 am »

Yes yes to the joint and muscle pain. I've had general aches and pains for a few years, now I realize they were minor! compared to what started around week 5 on Harvoni & Ribavirin. Deep, stabbing pains in thighs, calves, shoulders, arms. Dr. prescribed low dosage of Norco (hydrocordone & acetaminophen ), helped tremendously. Took as few as possible, learning to tolerate the pains.
On the plus side my 8 week test showed Undetected

Jazz · « **Reply #33 on:** June 27, 2015, 08:47:06 am »

I am 12 weeks post Sovaldi/RIBA Tx and the joints on my wrists and fingers are particularly painful at present, as is my hip. How long post Tx does this continue, does anyone know?

Best wishes to all, Jazz

Barbara Marin · « **Reply #34 on:** June 27, 2015, 06:49:18 pm »

I'm 2 months post treatment now. Happily still undetectable ☺️ My calf pains have gone from severe to still achy, but much less achy. My knee is still terrible but I am more and more convinced that it's because of osteoarthritis of my need for a knee replacement. Other muscles and joints are still bothering me, but not as much as when I was on the medication. It seems there is hope! I wish the best to everyone going through this.

Kim · « **Reply #35 on:** June 27, 2015, 11:42:42 pm »

Iam 3 months EOT and can report that my joint and muscle pain is much less than while on treatment. I have my labs drawn this week - will report in!

kwman007 · « **Reply #36 on:** July 14, 2015, 02:05:40 pm »

I have 4 more doses of Harvoni left. I started having more and different pains after about week 5. Having had Hep C for a really long time, I started having spine, knee, and some knuckle issues 15 years ago such that I was on pain pills, did PT, injections, etc. All osteoarthritis. My Dr. said it was probably triggered by the Hep C virus. But now on the Harvoni I am having symptoms of rheumatoid arthritis as well. Shooting pains in my left knuckles and right wrist (I am left handed), swelling, heat. Most alarming! I'm hoping these symptoms subside after the 12 week course of Harvoni is over. Also then I can go back to taking my favorite supplements. I am very sorry for you who have worse things going on - this is no fun! But the viral load is undetectable and has been since week 4. Incidentally I understand new protocols are in place which call for a cut off after 8 weeks if viral load goes undetectable -and blood proteins normal - after week 3 or 4. Best of luck you all!

Kim · « **Reply #37 on:** August 04, 2015, 10:40:46 pm »

I am now 5 months EOT and my joint and muscle pain now seems to be getting worse. I feel debilitated as it even hurts to walk. Again, I would not have done this treatment had I known. I would have waited for a better treatment to be developed.

Barbara Marin · « **Reply #38 on:** August 05, 2015, 12:20:08 am »

I am 3 mos. post and undetectable. Just found out I have cirrhosis. Turns out muscle wasting is a symptom of that. Your body isn't getting all the nutrients it needs from the food you're eating as the liver is sluggish so your body takes nutrients from your muscles. For years now I've been wondering why my muscles are wasting away. How is it that no one ever told me this? The good news is that I'm doing exercises to build up my quads and that's helping support my bad knee. It is possible to build muscle tone back. I'm Awaiting knee replacement surgery and it's essential to have the muscle support for rehabbing post surgery.

Kim · « **Reply #39 on:** August 05, 2015, 10:31:57 am »

This is a different issue...theses symptom came on suddenly after I started harvoni Tx. - nothing to do with cirrhosis.

dragonslayer · « **Reply #40 on:** August 05, 2015, 11:02:42 am »

Quote from: Barbara Marin on August 05, 2015, 12:20:08 am

I am 3 mos. post and undetectable. Just found out I have cirrhosis. Turns out muscle wasting is a symptom of that. Your body isn't getting all the nutrients it needs from the food you're eating as the liver is sluggish so your body takes nutrients from your muscles. For years now I've been wondering why my muscles are wasting away. How is it that no one ever told me this? The good news is that I'm doing exercises to build up my quads and that's helping support my bad knee. It is possible to build muscle tone back. I'm Awaiting knee replacement surgery and it's essential to have the muscle support for rehabbing post surgery.

Barbara, your 2013 biopsy scored a stage 2-3 and you list no more recent diagnostic tests. Curious as to how your cirrhosis was diagnosed?

Barbara Marin · « **Reply #41 on:** August 05, 2015, 12:17:33 pm »

I had a CT scan 3 months ago to investigate a small something in my liver that showed up in an ultrasound. That's how it was diagnosed. I'm having another ultrasound in October and my first fibroscan in November. How do I update my stats?

dragonslayer · « **Reply #42 on:** August 05, 2015, 01:59:40 pm »

Barbara, to change your profile, at the top of the page youll see 'Profile' hover over that and from the drop down, select Forum Profile. From there select Signature; thats where you can edit your sig that appears at the bottom of your posts.

It always freaks me out when I read of someone going relatively quickly from a low to medium stage to cirrhosis.

Best of luck to you, and congratulations on your SVR status! Hopefully you're in early cirrhosis and you liver can repair some now that the virus is no longer assaulting it.

Lynn K · « **Reply #43 on:** August 05, 2015, 03:44:10 pm »

Kim
What does your doctor say about your symptoms?

I realize your symptoms coincided with taking treatment but while possible it does not definately mean one caused the other. But in any event no matter what is causing your symptoms the most important thing is to find a solution.

Best of luck to you hope you are feeling better soon

Hopeful123 · « **Reply #44 on:** August 05, 2015, 10:27:11 pm »

I'm almost at week 8 and have at one time felt achy/ pain. It hurt all over but after a warm bath felt much better. I don't know if it's the same thing you have been experiencing but Maybee it could help if you haven't tried it. I was so achy because of lack of sleep which I have experienced before but haven't been in this much pain from it... I would say it's a combination of things to be careful of while on treatment like drink lots and lots of water, get enough sleep or rest, try to minimize stress, eat right. Which all might help

best of luck and hope your symptoms improve

Kim · « **Reply #45 on:** August 05, 2015, 11:46:13 pm »

I am 5 months EOT and my muscle and joint pains are worse than while on treatment. Ive just had a CT scan of my legs to determine why I am in so much pain.

stepkelin · « **Reply #46 on:** September 02, 2015, 02:09:57 am »

Joint mad muscle pain are main cause of calcium problem. If anyone have joint and muscle pain take some calcium daily by pill or any other way. Anyone have much pain that's make him cry take some drug for quick refile, but before taking it get a doctor advice.
How Teeth And Diet Cause Back Pain

MEA · « **Reply #47 on:** October 06, 2015, 08:53:54 pm »

Hi All, I am so relieved in a way that I am not the only one with severe pain. Mine started day 7 in my lower back. I thought i must have injured myself as I have 3 kids and work and constantly running. I had continuous back pain throughout the treatment and and then woke up my 8th week with debilitating neck pain. That is when I knew it had to be the Harvoni. I cleared the virus at 4 weeks so after talking to my doctor, I went off Harvoni. Its been two and half weeks since my last pill and still in pain. I went to an orthopedist and was diagnosed with moderate arthritis. I was shocked. I am 48 and the doctor said I have arthritis like a 63 year old. I have never experienced this kind of pain before. For those of you who are well into months of being Harvoni free, does the pain go away? and how long does it take? HELP!

chuck3a · « **Reply #48 on:** October 16, 2015, 03:59:54 am »

hi all, I am on the sovaldi, dakinza, and ribavirin tx week 5 of 24 week tx. Around week 3 I too started having muscle pains in both legs and groin area on left side. to relieve it so far I have used a TENS unit, (electrical stimulation), heating pads, and when really bad Vicodin and flexeril. (muscle relaxer) so far this has helped me get thru the days, the combination of the heating pad and TENS unit has helped a lot. thought I would throw that out there to maybe help someone else.

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Author Topic: Joint and Muscle pain anyone? (Read 43682 times)