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Hep C Discussion Forum -> On Treatment -> Harvoni side effects not told to me..
Post Info TOPIC: Harvoni side effects not told to me..
kalelalee


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Harvoni side effects not told to me..
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Hi Gracie, thanks for your response. I just couldn't figure out why the pain had increased so much lately. It only dawned on me yesterday that it might be the Harvoni. I am use to some pain as I have had it for years. But not to this extent. So I decided today to inquire and research it. It makes sense as that is the only major change recently in my life. At first after beginning Harvoni, I started feeling better with my energy levels. Felt really good. I remember saying to someone, " I feel so good, it's strange I am taking such a strong drug. No sides at all." guess it had to work it's way in. After one month the Hep C was not detected, so I know it's working. Been a long time waiting to hear that news. I have a really high tolerance to pain and will deal with this. It's just hard and the pain makes me very tense all the time. It's like doing your grocery shopping while you feel your being stabbed all over and having to maintain and keep yourself from screaming all day, every minute, non stop. Don't mean to be a whiner, and thanks for just being there. I remember when I first was going through my treatment in 2009 and had found a great site to get support as well as give support to others. Made a lot of friends and felt I wasn't alone. I still am in contact with a couple people from that time.
Thought this time it would be a piece of cake. NOT!!!!!!! Oh well, guess I will settle in and cuddle with my heating pad for the night. Who says you can't buy love.. lolol
Kalela

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Diag. 2009 Hep C 1A Vl-3mil. Interferon/Rib- Non responder after 3 months. Started Harvoni 9/15 for 24 weeks. After 4 weeks - undetected. Platelets still low, Alt 20 Ast 20.
Gracie


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Oh Kalela, 

How awful for you to be in such pain. The harvoni definitely gave me some new aches and pains, but not nearly as bad as yours. I'm not sure if mild exercise would help or not, but you may want to try some gentle stretching.

This drug is really powerful and it also really works so let's hope once your finished with the hep c that some of your pain will let up. It certainly causes joint and muscle pain on it's own. There are others who do see improvement in the pain once the virus is gone. I hope the same for you.

Gracie



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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.
kalelalee


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Thank you so much. Actually, it is Norco that I am taking. But I only take it sparingly. I have osteoarthritis as well. but I also have been experiencing increasing joint and muscle pain although I have been dealing with that for years as well. No one seems to have answers. I thought maybe fibromyalgia?? But have yet to receive any answers. I at one time also thought maybe I have bone cancer since the pain is deep within. I worked for a hospital lab, so I would at times feel I had every illness that came across my desk. Paranoia I guess. Right now, I have pain shooting up my spine and into my neck and shoulders. My fingers ache, knees, toes, wrists and elbows. I got tired of going to doctors for a few years as they kept treating my like I just wanted drugs or was a hypochondriac. Plus, after the last treatment experience in 2009 I just wanted to stop being a patient. I had a very bad experience and ended up failing treatment. At present, My doctor said that I don't even need to come in until I finish treatment. Where as my last doctor wanted me to come in weekly, then monthly. I will call him Monday. I always have pain, but it has always been manageable. But not lately. It's really intense.
The pain gets so bad I go into panic mode and just start crying. so, yes I have been also taking Tylenol/codine that I got in Canada a few years ago. Maybe it is affecting women more, I don't know. I just want the pain to stop. Not feeling too good lately. It reminds me of when I was on the prior treatment and I felt so horrible. I am sure my family got sick of hearing about it. I will refrain from taking anymore Tylenol and will drink more water as well. I have had no one around to talk to about this as I am living in a new state. Maybe it's good I got on this site today. Thanks for letting me vent..
kalela

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Diag. 2009 Hep C 1A Vl-3mil. Interferon/Rib- Non responder after 3 months. Started Harvoni 9/15 for 24 weeks. After 4 weeks - undetected. Platelets still low, Alt 20 Ast 20.
wmlj1960


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kalelalee wrote:

 Nothing stops the pain except Tylenol #3 and Vicodin.

 FYI: I just want to make sure you and your doctor are aware that the ingredient in both Tylenol and Vicodin, ACETAMINOPHEN, is very hard on a sick liver.

 As an alternative to Vicodin ( HYDROCODONE BITARTRATE 5mg, ACETAMINOPHEN 500mg ) my doctor prescribed Norco for a while, which is (HYDROCODONE BITARTRATE 7.5mg, ACETAMINOPHEN 325mg). You may want to ask your doctor about Norco. It worked better for my pain and the lower ACETAMINOPHEN content made my liver happier. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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wmlj1960


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Hello Kalela,

 Prior to starting Harvoni I had pain in joints that had been previously injured in the past. My doctor said it is osteoarthritis - post trauma. But in my case these pains did not get substantially worse after starting Harvoni. I have now completed 15 of 24 weeks and still am not experiencing any significant increase in joint pain.  I'm curious to know what the difference is such as possibly applying more to females than males. We don't know for sure yet due to Harvoni being so new. It may become more clear as time goes on and more Sx information is collected. One thing I have found that helps reduce Sx's is staying adequately hydrated. This has already been mentioned and you will continue to see it mentioned because it is true for so many.

As Tig56 mentioned, there are substances that can reduce the ability of Harvoni to do it's job. More information on that is in the link I'll include below (see section 5 thru 7).

Being new to the site, if you need definitions for the abbreviations you will see in members post and signatures, and for information on creating your own signature click HERE.

I'd like to welcome you to the forum and there will be others along to welcome you as well. We have a friendly, knowledgeable group here who will be glad to help you in any way we can. So kick your shoes off, make yourself at home and join us in our common journey to slaying the Hep C dragon. smile

Click here for more information on Harvoni .pdf



-- Edited by wmlj1960 on Saturday 7th of November 2015 08:53:39 PM



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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kalelalee


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Thank You Tig for your reply. At first I thought it was just due arthritis. I have dealt with joint pain and back and neck pain for years. But this has become much more intense and ongoing. I remember how I felt when on the prior treatment of Peg. interferon and rib. Felt horrible then as well, but the whole journey was pretty barbaric. I swore I would never do another treatment like that again. so when Harvoni came around, I made it a priority to get it. Hasn't been easy either. I am on SSI and medicare and that alone makes it more difficult. Why waste a bunch of money on someone already damaged ya know? I just moved to Illinois from California and I couldn't even get a Hep doctor to see me let alone treat me. One doc said my case had to be in stage 4 cirrhosis before he would consider treatment. Horrible medical care in California. Lots of cut backs in Illinois as well. So when I found an awesome doctor, that had the knowledge and contacts to not only get me approved with Medicare, but also found a medical donor to pay my portion of the bill, I was so stoked. I am lucky and so blessed. But yes, in a lot of pain. Really jolted me in the last 2 weeks and this last week has sent me to new pain levels. But I have noticed that not only am I having pain, numbing and tingling in ALL my joints, I am also experiencing the worst pain in places I have had injuries in my past. So, I am trying to hold on to the saddle and not fall off this horse no matter what I feel.
The clinic where my primary doc is has not been a good experience. All the doctors are in learning processes. They are in there first year after college, so their knowledge and experience is very limited. They don't like to prescribe any narcotic meds, so I am having a terrible time getting any medication for this. My gastro doc is great. I may just go to him to figure out how to deal with this. Will keep you posted on my progress and also read up on others experiencing similar sides.
Kalela

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Diag. 2009 Hep C 1A Vl-3mil. Interferon/Rib- Non responder after 3 months. Started Harvoni 9/15 for 24 weeks. After 4 weeks - undetected. Platelets still low, Alt 20 Ast 20.
Tig


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Hi Kalela,

Welcome to the forum, but I'm sorry to hear you're feeling so bad. You aren't alone either. We have a couple of active threads going right now on the subject and we're working on collecting some information on this subject. We're seeing others with the same problems you speak of. 

Before you take the magnesium, you need to discuss it with your doctor. Some forms of magnesium can decrease the absorption of Harvoni, making it less effective. They warn of it in the manufacturers literature.

There will be others come along to discuss this with you. Hopefully our own Harvoni warriors can give you the best advice to help with your discomfort. You have to concentrate on adequate hydration, that's one of the best things you can do to help avoid many of the side effects. If you're not drinking at least 3-4 liters of water per day, you're not drinking enough.

Be sure and review our On Treatment as well as Post Treatment threads. You'll find more threads on the subject. Also be sure to use the search function above, it will provide additional leads on conversations here. If you have any questions, don't hesitate to ask. I'm glad you're here!



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67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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kalelalee


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Started Harvoni Sept. 9 2015. Was a real miracle for me to even get the medication. Failed interferon/ribivarin in 2009. Left my body in worse condition. I am experiencing a side effect I didn't expect to have during my new treatment with Harvoni. I was told I may have headaches, nausea, diarrhea. However, the body and joint pain has been getting worse and worse. By no means would I be willing to stop taking the Harvoni, but just a heads up for those of you who begin the medication and do experience pain and numbness. It will vary of course, but for me, the pain has been off the charts and the cause of many tears. None of the doctors seemed to make the connection when I have explained to them what I am feeling. Nothing stops the pain except Tylenol #3 and Vicodin. However, I am going to start taking some B12 and magnesium and vitamin d. I have heard that may help. I have been unable to function normally for nearly a week now as the pains have gotten so bad.
Pain seems to be worse in areas where injuries have occurred in my past, and in my joints. My feet feel hot as if on a stove, tingle and throb with pain. My hands are numb and joints in fingers hurt worse than normal. So, just be prepared for other side affects than those the doctors may have described. I keep telling myself, It will be worth it and I know it will. After one month my labs were already normal. first time in many years. So I will gladly suffer and cry a few thousand tears to get this hepc monster off my back..

Take care and God bless
Kalela

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Diag. 2009 Hep C 1A Vl-3mil. Interferon/Rib- Non responder after 3 months. Started Harvoni 9/15 for 24 weeks. After 4 weeks - undetected. Platelets still low, Alt 20 Ast 20.
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