12 weeks Daklinza and Sofosbuvir, post tx joint pain and tiredness

[hopefulhelena]

Hi, I'm new here.
I've read here that some people have joint pain after Harvoni tx.
I've completed 12 weeks on Daklinza and Sofosbuvir which I think is similar and am having joint/muscle pain (which started 5 weeks into tx and now 4 weeks post tx is still bad).

I find very few people on the same meds as I took (sourced myself against the advice of the NHS in the UK) and not even the medical professionals are able to give me much advice- I was told by a nurse that I shouldn't be having any joint pains.

I did find a European Medicines Agency article which detailed arthralgia (joint pain) and myalgia (muscle pain) as 'common' side affects of Daklinza and Sofosbuvir although I can't find much on post treatment side effects.

The tiredness I experienced during tx comes and goes, some days/or parts of days I'm quite good but more often I feel tired and a bit breathless. I've been able to do some gardening which I couldn't have done while on tx though

Would love to hear how others are coping-I feel quite alone being on these new tx and worry all the time. I inadvertently read this morning that there are a number of relapses of G3s on Daklinza/Sofosbuvir for 12 weeks and that 16 weeks might be advised in the future- doesn't help when I have 8 weeks to go for my 12 week post tx tests!!

__________________
Diagnosed Feb 2015
G3
RNA over 68,000 IU/ml
fibroscan 8.7 kPa
ALT ranged from 128-189 before tx, EOT it was 20
UND at 4 weeks
UND at EOT 12 weeks
now waiting for 12 weeks post TX tests

[MaryC]

Welcome Hopefulhelena!

So glad to hear from a fellow GT 3a who has completed tx with Sovaldi and Daklinza.  I, too, have read of relapses specifically with GT 3's as we tend to be the most 'challenging' to treat these days.  I was really sweating my 3 month post tx blood work - fortunately my viral load remains negative! 

In terms of muscle/joint pain...I had quite a bit (and fatigue also) prior to my treatment.  Some days were better or worse than others.  During treatment, however, I noticed less joint/muscle pain and my fatigue was greatly improved.  The muscle/joint aches remain improved post treatment, but I don't have the energy level I experienced during tx - I think the meds were a bit activating for me.  It is my understanding that not only does the HCV attack the liver, but can stimulate the body's inflammatory response causing muscle and joint pain and autoimmune issues.  I have noticed others, on this forum (further along post treatment), have commented on experiencing some slow, but steady improvements over time post tx.  I am hopeful for continued improvements over time. 

I think continuing to eat healthy, stay active, rest and maintain positive social connections are of benefit during recovery.  I truly believe that recovery from this chronic health issue (years of assault on our liver and body by this horrible virus) takes time and will be a slow process.  Stay 'hopeful'.

Best to you,
Mary

[hopefulhelena]

Mary
Good to hear from a G3 who has completed the Dak/Sof tx and beat this horrible disease. I still have 7 weeks to wait to find that out! I did notice your liver function and fibrosis scores were good before staring TX, much better than mine- that's me wondering if its going to work for me!? It's so hard to stay positive.

I was diagnosed with PCT (which is a secondary illness-a symptom of something else) and when further tests were done the HCV was discovered. I immediately gave up alcohol (my few glasses of wine at weekends) and because of the PCT had to stay out of the sun. I also gave up smoking so there's not much else more I can give up- except maybe my sweet tooth! I eat healthy and try to stay active -when I have the energy. I had been pretty active until about 6 months before I was diagnosed, when I started to feel tired. I had thought that once I got off the tx I'd get back to the energy levels I had prior to this tiredness but am now feeling that recovery is going to take a lot longer than I anticipated.

Thank you for your kind words and may you continue to feel better and build up your energy levels.
Best wishes
Helena

PS as regards positive social connections I'm afraid I was not able to tell anyone outside my close family; not even friends. I live in a small place where news travels like wildfire so I've basically shut myself off from people

[KimInTheForest]

HI Helena, and welcome to the forums! Good luck on your 12 week post-tx tests down the road.

I was geno 3a but was cured last year with 12 weeks of harvoni+ribavirin. I would have rather had 12 weeks of sovaldi+daklinza, but daklinza had not yet been approved at the time I started treatment. It is true that post-treatment recovery takes a lot of time and work for some of us, even though we are cured of Hep C. I have had a lot of health problems and malaise post-tx that I did not have pre-tx or during tx: fevers, night sweats, swollen lymph nodes, extreme fatigue. That has all lasted many months post-tx. It does slowly improve, but stress of any sort plunges me right back into it immediately. These are not issues I coped with pre-treatment. I was actually quite healthy with no particular medical issues pre-treatment.

I am confidant that with enough time, rest and stress reduction, I will get my full health back and be even better than before due to no more Hep C. I have already noticed improved mental functioning, memory, clarity, processing ability (improved over my pre-tx mental functioning).

It is not clear whether the post-tx "syndrome" some of us experience is due to the drugs specifically, or perhaps to the very rapid clearing of virus after a lifetime of co-existing with it... and that whole situation may leave our immune system and other physical functions temporarily out of balance.

good luck!

kim

[hopefulhelena]

Thank you Kim

I really appreciate people like you and Mary writing. It does help to hear from others who have been through this, and been cured. My family think I spend too much time online looking up about this but I don't want to always voice my concerns to them.

I read that after tx the immune system can be in hyperdrive and that this can cause symptoms so I' m hopeful that when it settles down we can all have better health.
Good luck with your recovery
Thanks
Helena

[Daisychain58]

Hi all
I am a 59 yo female who has completed treatment 6 months post with Solvadi and daklinza for genotype 3a.  I am Hep c clear but still feel unwell. I'm constantly Tired but no brain fog, joint aches and pains, night sweats, insomnia, sore throat, no interest in life, bad depression at times, side affects I did not have prior to treatment.  I'm glad the virus has cleared but feel worse than before treatment unless I drank say 5 glasses of wine and that would put me in bed for 2 days. I have other minor health issues but none the less I felt better half way through treatment than I do now.  I'm just wondering if anyone else is experiencing this.  I was very hopeful that I would feel like my old self but I don't.  Feeling very confused and I'm not at all happy feeling this way and am I the only one.

[Daisychain58]

Kim the Forest I can completely relate.  Stress has plunged me right into a depression that had lasted for about a month, unheard of for me...3 days poor me am I would be back up and running.  Not so now. I feel like a different person than I was.  I am so hoping that this is not permanent and that I will recover.  I do take care of myself, eat healthy, juice almost daily, drink little, exercise when able.  Thankyou for sharing because as I keep saying I thought I would be feeling very much better than I am.

[KimInTheForest]

Hi all
I am a 59 yo female who has completed treatment 6 months post with Solvadi and daklinza for genotype 3a.  I am Hep c clear but still feel unwell. I'm constantly Tired but no brain fog, joint aches and pains, night sweats, insomnia, sore throat, no interest in life, bad depression at times, side affects I did not have prior to treatment.  I'm glad the virus has cleared but feel worse than before treatment unless I drank say 5 glasses of wine and that would put me in bed for 2 days. I have other minor health issues but none the less I felt better half way through treatment than I do now.  I'm just wondering if anyone else is experiencing this.  I was very hopeful that I would feel like my old self but I don't.  Feeling very confused and I'm not at all happy feeling this way and am I the only one.

Hi Daisychain. Sorry to hear about your post-tx unwellness. I and quite a few others here have also posted about prolonged and seemingly new health problems that arose for us post-treatment - immediately post-treatment. Personally, I think there is a connection between the treatment and these post-tx problems. In any event, it is a good idea to be working with your doctor at this point to try to rule things out. Complete Blood Count (CBC) vitamin deficiencies (D, B12, magnesium), maybe rheumatoid factor (blood test), thryoid function etc. Also Epstein Barr virus. It doesn't hurt to rule things out - and maybe find something in the process. And in the meantime, do your best to eat well, drink lots of water, sleep well, exercise/walk to whatever degree is comfortable. And hold positive thoughts in your head and heart. You are, after all, free of Hep C. I too had expected better health post-tx, not worse. But I have much to be thankful for. I focus on that.

keep us posted!
kim

[Daisychain58]

Thanks Kim for the reply and support.  I feel like lifting myself out of a depression that is alien to me difficult.  Staying positive as you say is so very necessary..I just can't seem to get interested in anything anymore.  Anyway, I'm seeing my doctor next week and will organise a few tests as see what comes from that.  The Barr Epstein virus is an interesting comment that I can relate and feel that could be part of my night sweats.  Thanks again and Happy Easter to you.  Keep on keeping on

[crabby old guy]

Hey Daisy, I'm just past 6 months post tx and even though I've had back and neck problems for quite a while my other joints hurt a lot more now than before tx. Still have the depression, missed 2 funerals in 3 weeks that I should have went to, half way through the day I wanna take a nap. I had my 6 month post tx blood work and when the doc sent the message that I'm considered cured I was like whoopee fn do. See her on 6-16 and hopefully she can recommend a shrink that will put me on some meds for the depression. HANG IN THERE!

[Jorah]

Hi, I'm new here.
I've read here that some people have joint pain after Harvoni tx.
I've completed 12 weeks on Daklinza and Sofosbuvir which I think is similar and am having joint/muscle pain (which started 5 weeks into tx and now 4 weeks post tx is still bad).

Hello Helena, I'm also a Geno 3a, I was started with Epclusa the Docs thought it was a better choice. I'm reading up a lot in forums and boards and I'm concluding that most of these DAA's side effects appear the same across no matter the brand. Many on Epclusa are complaining about the joint pain, neck pain etc. (together with other symptoms) It appears that is what antivirals do,  Riba appears even stronger with sides, although the Docs claim I don't need it....and hopefully I won't need it in the future. (cross fingers knock on wood) but by the time my TX will be over and the extra 3 or 6 months pass...Vox will be available.

Hopefully it will all pass     Take care

[kimharvest]

3a also. This month is my 2 year mark after ending solaldi/riba after 4 months. I'm now wondering whether I should have a 24 month virus check.  My arthritis got way worse on the meds. My joints grew a lot. I also got it in my big toe so that feels broken at times. I had mono after the cure that took me down for a year. Then my high blood pressure was too high for years, just getting it down recently. Ruined my eyesight. Heart worse and lungs. Had to go on medicine to help with COPD that went downhill after/during cure. Energy better but not normal. I still am dysfunctional at night. Started a job and it is tough! A lot of trouble learning. Fog mostly gone but don't feel very normal. Drained - long term. Gilead never cared about my case and no one has ever checked up on me after all that expensive medicine. Thank goodness for this forum. good luck to all.