I did not do olysio and did not have any joint pain during my treatment, so maybe it is the Olysio.or maybe it is the length of treatment since I only had to do treatment for 12 weeks.

Hi All,

Anybody have any theories as to why we Sovaldi and Olysio folks have these joint and muscle issues? Was it the Sovaldi, the Olysio? And if it was one of those....why? Also...is it only us, or do the Harvoni folks seem to be getting these also? 

Some days are worse for me then others. I wonder from time to time if my continued symptoms (insomnia, higher than normal blood sugar, minor depression, low grade anemia, joint and muscle pains, memory issues, etc.) are a result of my 45-50 years of Hepatitis C, the Sovaldi and Olysio, advancing age (I'm almost 65) , compensated cirrhosis, or a combo of all of those?!?

I'm still better than I was with the Hepatitis C and would do it all again in a heartbeat!

Cheers!

Peter

Congrats Rudi!

It's great to hear you finished tx successfully. Many of us on S/O have joint and muscle issues but it definitely beats the alternative. I can't wait to see you achieve SVR. Treat your body right with a healthy diet and active lifestyle and you should be just fine.

Thanks for sharing your outstanding news!

-Rob

Hi Rudi,

Congratulations on finishing treatment!! We knew you could do it and are so happy to see you cross the finish line successfully. I have no doubt that you'll be undetectable, I feel it in my bones!! Trust me I can feel ALL of my bones too, lol! Now you need to take some time off and treat yourself to a weekend of pampering, you've earned it. Keep us informed of all the future news, we're rooting for you! Good luck, you're a winner! WOOT!!

Tig

Happy MLK Day!

Today is my last day on S/O. It feels a little surreal. 

I'm kinda limpin' into the finish line - a little anemic and a bit of joint pain which is completely new to me. I've also gained 12 lbs as I had lots of nausea and lived on carby, stomach soothing foods and gallons of lemongrass and ginger tea. I have been doing a brain training app (Elevate) and seeing that my brain is improving. Prior to TX I had some brain fog issues - lots of trouble finding words and piecing thoughts together, even though my liver is in pretty good shape. Hep C has wreaked havoc with my immune system tho.

During Tx my brain seemed to go on vacation for a few hours after I took my pills. It would be better again the next morning. I've noticed that my problem solving skills have been better during that pre-pill morning time than they have been in several years. 

I won't know if my TX worked until early May but I've made my peace with that. I am grateful my last ALT/AST results were both an amazing, and comforting 18. I am grateful to Gilead and Johnson and Johnson for $150,000 in pills and a chance for a new life. I realize there is much to be angry with Gilead about, but I am also grateful.

I feel like my new life begins tomorrow. I'm going back to yoga in the hope it will help my joints. I'm going to eat a steak to boost my sagging hemoglobin. 

I hope my energy comes back, and I can make my big dreams come true.

Hugs to all ~ Rudi

AASLD Guidelines:

Monitoring Patients Who Have Completed Treatment

Patients who do not achieve an SVR, because of failure of the treatment to clear or to maintain clearance of HCV infection with relapse after treatment completion, have ongoing HCV infection and the possibility of continued liver injury and transmission. Such patients should be monitored for progressive liver disease and considered for retreatment when alternative treatments are available. Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for nonHCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma.

http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

Tig

Hi Tess,

The SVR 12 standard applies to any combo using these new DAA's. This includes Sovaldi/Olysio, Harvoni, and etc. In Gilead's clinical trials, all patients that achieved SVR 12, also achieved SVR 24. Hopefully this makes sense?

Most if not all relapses occur within 4-8 weeks post tx. Hopefully the Riba is almost out of your system and you start feeling better. Take care.

-Rob

I thought I read on the Ghilead site that SVR-24 is considered cured.and that was used in the studies to determine the percentages given for cure rates.  So has this changed to SVR-12 for the newer treatments like Harvoni ?

As for memory issues, mine still come and go, as well as, some skin and stomach issues I acquired with ribavirin. 

Hi Mac,

As Rob mentioned, if you've reached an EOT +12 and are UND, you're SVR! That has been the new standard for SVR for about a year now. I was always nervous between tests even out to EOT + 1 year, but the tests have always returned UND. The chances for anything else are <.5% and those are mighty good odds! The longer we go, the happier it gets! Congratulations Mac, enjoy your Hep C free life!

Tig

Congrats on your SVR 12, Mac! My doctor is the same way- he won't call me "cured" until 24 weeks. You would think these docs would be up on the latest SVR standards. Oh well, SVR 24 has a perfect track record after 12 weeks and will feel just as good too get that verification.

I feel bad for you having to work with such a rough group of firemen for so long. lol- take care of yourself, Mac. You deserve it!

-Rob

Dec 10 UND 12 weeks S/O Tx. Good to be on post treatment page ! Memory does seem a little slower, but dermatological improvement are good.  Joint issues are coming back but not as bad as they were , all were gone at 8 weeks. DR .will call me SRV 3/1/15 when I am UND 24 weeks. JUST after Fireman Rob. I worked at Fire Stations for 26 years in the DFW area of Texas, but not a Fireman. SVR to all ! :)

I have had concentration issues and have had to retrain my brain by doing quizzes and playing computer games - it does work for me.  Things will get better.

I also had increased memory problems during and following S/O tx.  Also noticeable increase in muscular and joint/arthritic type problems (especially in the hands and knees) and the tendonitis in the elbows. In my case some of this could be relapse related or perhaps age related?   Hoping for SVR this round, along with increased memory, and mental acuity.

Rubye wrote:

Maddie, I notice that you are Q80K positive and have reached SVR 12. It makes me happy to see that since I am also Q80K positive. I'm on my 14th week of S/O, only doing 16 weeks.

_____________________________________

Hi Rubye.....you can take that happy up another notch....I am Q80K positive too and SVR 12 with S/O for 12 weeks. :) 

Actually I'm probably SVR 24....just haven't done the labs yet. 

Gator Man wrote:

---

Wayne, I have accepted the fact that I will never be as fast of a runner as I was in my pre-tx, inflamed liver days. Go figure.

john

---

 Mind boggling, the irony, but I can live with it.  As long as I can get out there and trot around some, I be good. 

January 8th will be exactly 1 year from commencing S/O. My insomnia is probably worse and I've developed tendinitis in my elbow over the last few weeks. For no particular reason, I stopped weight training in August and my elbow soreness didn't start until a few weeks ago. Since it's been more than 6 months post-tx, I never made any connection with S/O, although I see that Peter has the same problem.

There have been several subtle physical changes over the last year that I attribute to SVR and better liver health The most pronounced are dermatological improvement and reduction in muscle cramping. Although never formally diagnosed, I had all the symptoms of Porphyria Cutanea Tarda according to my Doctor. The easily damaged skin and ulcers on my hands and arms have gone away.

Wayne, I have accepted the fact that I will never be as fast of a runner as I was in my pre-tx, inflamed liver days. Go figure.

john

No noticeable memory loss here, but joint/muscle troubles, yes.  Muscle problems were more severe while on treatment in my case, but joint issues increased post-tx.  It is improving (8 months post) and I have resumed running, though in dreadful shape from nearly a year off.  Overall, I'm optimistic.  If I can train properly and avoid injury, I think I'll be ok.

wayne

I haven't noticed memory loss but I have experienced all sorts of muscle issues. I've had ribs out in the front and have had significantly longer recovery time after working out. I'm only 33 and definitely had none of this before tx. I have also noticed changes in my vision and get dizzy sometimes for no reason.

Don't get me wrong, I'm very grateful to be SVR 12 but I can't believe some of the challenges I'm having trying to get back into shape. Good luck everyone!

-Rob

Finished Sovaldi and Olysio in July. Have noticed stiffness, shoulder pain, and tendinitis in elbow. Also some possible memory problems but those were starting before treatment. It seems musculoskeletalaches in the shoulders are common post treatment. I'm 64. With cirrhosis it is hard to determine what causes what! But the shoulder pain and tendinitis were not at all present before treatment.

I use to have a near perfect memory, but now it has declined quite a bit. However, my memory is still much better than my wife's and she is 13 years younger than me, so I guess my memory is on par for a person who will turn 58 this year.

Yes, memory is still a problem and can't remember now if it is better or worse than before treatment - lol.  Right after treatment it seemed better but I find it comes a goes just like having more energy.  I am only about 6 weeks post treatment and it is like every few steps forward I go in feeling like my memory and focusing is much better I take a step back a few days later and forget things again.  I am hoping that after 6 months (after meds are completely purged from body) that I stop taking steps back.

I think my memory used to be better, but I can't say for sure.  Just kidding!

My memory has been bad for years.  The interferon/ribavirin 15 years ago made it much worse.  I didn't notice a huge overall difference in memory while on S/O or since completing it.

Memory is a funny thing.  It is easier to remember things while you are in a similar state as when the memory was formed.  I am rediscovering memories from years ago (pre Hep-C).  I remember less of what happened while on the S/O.   Is that better or worse?  Hard to say.  But it is different.     

Hi Maddie and Mary,

Maddie, I notice that you are Q80K positive and have reached SVR 12. It makes me happy to see that since I am also Q80K positive. I'm on my 14th week of S/O, only doing 16 weeks.

I have problems with memory but am still treating so who knows. I do know that there are so many factors that can contribute to memory loss that it is hard to say. I saw a behavioral neurologist recently because of my memory issues, just before I started tx, and he decided my memory problems were due to depression. I'm 67 and think the 60's are still pretty young for permanent memory issues. So, be it post-tx issues, depression, or old age, I think there are many tools to help us with the main one being habit or structure or routine. 

I also have the neck/shoulder muscle aches but am hoping they will simply go away after tx. We shall see.

Hi Mary,

I completed S/O last April and so far the only thing I've noticed is increased musculoskeletal aches.  I even had my doctor test for Lyme, thinking it was possibly the reason for the pain, but no.  Hopefully, these symptoms resolve at some point. 

As far as I can tell my memory is the same....no better, no worse. 

I'm 21 weeks post treatment with Sovaldi/Olysio, reached SVR Oct. 23.  My memory, both long and short term, is much worse since I finished treatment. I'm 63 years old and maybe this is age related rather than treatment related, but I wanted to ask if anyone else has experienced memory problems after S/O treatment?