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Ribavirin and Exercise
I am 5 weeks into Sovaldi/Ribavirin treatment and all is going very well. I have been undetected since week two and I feel fine. I am cross country skiing in the Vermont mountains 3-4 times a week and feel good, maybe a little off but then I have been skiing quite a bit lately. I was out yesterday with a bunch of guys 10-20 years younger than me and I was the one waiting at the top of the climbs. The nurse practitioner at the hepatology department said I should exercise all I want. The nurse who calls me every two weeks from the specialty pharmacy called today and said I should be vigilant because if I become anemic I wouldn't want to stress my heart muscle. I had an echocardiogram two weeks prior to starting treatment and was given a clean bill of health. I have always been active so skiing this much is not new to me. My hemoglobin went from 15.5 at baseline to 14.1 at 2 weeks to 13.8 at 4 weeks. 13.7 is the upper limit of anemia so I am close. I have read that hemoglobin tends to level off by 4 weeks. So I am wondering if I should be cutting back on the exercise or if I should continue. It seems to me I would feel winded and weak if there was a problem. If that did happen I would of course stop immediately. Anybody have an opinion? I am not due for another blood draw for three weeks.
Yes by all means keep going with the exercise! I suspect that to some extent it's not that I am exercising because I have no side effects, but that I have no side effects because I'm exercising. I trained hard for treatment. I saw somewhere shortly after my diagnosis in April 2013 to prepare for treatment as you would a marathon. Not just in a metaphorical way like prepare for a long and difficult effort but also literally like get in the best physical shape possible. Of course I thought I was looking at 24 months of interferon and ribavirin. I hadn't even heard of sofosbuvir/sovaldi at that point. But I took the advice seriously and an glad I did.
Awesome. You are almost done!
Hopefully, I am starting Sovaldi/ribivirin next month. Finally had an appointment with the hepatologist today and got baseline testing (fibroscan, PCR....) done (it was a year since testing was last done) to support the approval process. My Dr. says that he expects I will do well if and when the drugs are approved. I am encouraged that you have been able to exercise through treatment (I exercise daily and would go insane if I could not! Exercise is my drug/my alcohol/my energy). Joanne.
Hopefully, I am starting Sovaldi/ribivirin next month. Finally had an appointment with the hepatologist today and got baseline testing (fibroscan, PCR....) done (it was a year since testing was last done) to support the approval process. My Dr. says that he expects I will do well if and when the drugs are approved. I am encouraged that you have been able to exercise through treatment (I exercise daily and would go insane if I could not! Exercise is my drug/my alcohol/my energy). Joanne.
Thanks Nan, That's very sweet of you. I have been reading your posts about the challenges with your husbands treatment, he's a lucky man to have you caring and advocating for him. Keep up the good fight. All my best to the both of you! Dave
To say I am thrilled for you is an understatement. How wonderful!
You are as amazing as this Sovaldi stuff! :-)
Nan
You are as amazing as this Sovaldi stuff! :-)
Nan
I just had my 8 week blood work done and my hemoglobin actually went up a tiny bit from 13.8 to 13.9 week 4 to 8. Platelets are up 57 points from 177 to 234 since the beginning of treatment and AST/ALT from 78/205 to 17/13. I was on a 4 day, 60 mile back country ski trip last week up in the northern Vermont mountains and had a great time, I felt strong! 4 more weeks to go...this Sovaldi stuff is amazing!
Hi Klon. Anemia is considered less then 10 as stated above. Personal Trainer of 18 years so perhaps can help with your question. Go to Mayo and they are aware of my profession as I didn't know how the meds would interfere. You and I are on the same treatment and I am at day 50. My hmg is 11 and women have lower #s so they are OK with it. What you want to do is make sure that you have an extended warm up and a longer cool down. Meaning take it easy 5-7 mins prior to and afterwards a ski run. The blood can pool and hang out in the extremities if not given ample time to get back to the heart. Have noticed some palpitations with this treatment so listen to your body and if you do tone it down. Also varacies are contraindicated so lifting (ESP overhead) 10 or more lbs can cause thoracic pressure so if you have this condition be aware. Hydrate often. Other than that your body has adjusted to this activity and should not cause conflict.
You wrote:
"The anemia reported in clinical trials for HCV drugs as an adverse effect (side effect) was less that 10.0 in men and women. I think what I am reading is that in trials if a patient's hemoglobin was more than 10.0 it was not reported as an AE. "
That sounds right. My husband was anemic at 8.9 Hgb before starting treatment. They started him on Procrit once weekly and waited until he reached 10 in labwork before starting his treatment since he is on sovaldi + ribavirin for 24 weeks. He continues to have a weekly Procrit shot to keep his hgb at 10.
Enjoy your skiing. I definitely agree with those numbers you are more than fine!
Nan
"The anemia reported in clinical trials for HCV drugs as an adverse effect (side effect) was less that 10.0 in men and women. I think what I am reading is that in trials if a patient's hemoglobin was more than 10.0 it was not reported as an AE. "
That sounds right. My husband was anemic at 8.9 Hgb before starting treatment. They started him on Procrit once weekly and waited until he reached 10 in labwork before starting his treatment since he is on sovaldi + ribavirin for 24 weeks. He continues to have a weekly Procrit shot to keep his hgb at 10.
Enjoy your skiing. I definitely agree with those numbers you are more than fine!
Nan
thanks I do check my pulse periodically while out on skis or when cycling. Recovery time is important too. I was out on skis for 3 hours again today. One hour after I was done my blood pressure was 116/65 and my pulse rate 45. I think I'm fine..,.
I keep my eye on my heart rate when I`m on my x-bike.
It has programs and I compare my rate to past onesand how I feel before I get on.You can get a HR monitor on the cheap looks like a watch for when your skiing etc.You dont have to chart anything just little mental notes.For example I did the same run last week and my HR was and today it`s.HR should be going down a bit.
It has programs and I compare my rate to past onesand how I feel before I get on.You can get a HR monitor on the cheap looks like a watch for when your skiing etc.You dont have to chart anything just little mental notes.For example I did the same run last week and my HR was and today it`s.HR should be going down a bit.
Here is the response from the cardiologist:
"from a cardiac standpoint you can continue to do your exercise as long as you feel well"
"from a cardiac standpoint you can continue to do your exercise as long as you feel well"
In poking around on google I think that my confusion comes from two different definitions of anemia. One is the anemia that comes from iron deficiency, auto-immune disorders, etc. That is a hemoglobin reading of somewhere around 13.5 or less in men and 12.0 or less in women. The anemia reported in clinical trials for HCV drugs as an adverse effect (side effect) was less that 10.0 in men and women. I think what I am reading is that in trials if a patient's hemoglobin was more than 10.0 it was not reported as an AE.
" Is it that there is a level where one can be below normal but not anemic?"
Yes, that is the levels between the low end of the normal range of your lab and <10 g/dL. Sorry I didn't explain that well.
I myself had hemoglobin levels below normal range at times during my 48 weeks of the Sovaldi/Ribavirin treatment and did feel more fatigued and out of breathe than after I stopped treatment.
As far as physical activity...Even for us who wait for liver transplantation we are encouraged to stay as active as possible as activity has benefits both physically and mentally.
As long as you can do something and you don't have an underlying health issue there is no reason to avoid physical activity. As flcyclist said your NP knows you and is in a better position to judge what fits your particular situation vs a specialty pharmacy nurse who has never met you.
Enjoy! Good luck with SRV.
Hector
Yes, that is the levels between the low end of the normal range of your lab and <10 g/dL. Sorry I didn't explain that well.
I myself had hemoglobin levels below normal range at times during my 48 weeks of the Sovaldi/Ribavirin treatment and did feel more fatigued and out of breathe than after I stopped treatment.
As far as physical activity...Even for us who wait for liver transplantation we are encouraged to stay as active as possible as activity has benefits both physically and mentally.
As long as you can do something and you don't have an underlying health issue there is no reason to avoid physical activity. As flcyclist said your NP knows you and is in a better position to judge what fits your particular situation vs a specialty pharmacy nurse who has never met you.
Enjoy! Good luck with SRV.
Hector
I'd lean more towards the advice given by your NP. The nurse with the specialty pharmacy is more likely to give advice that's more conservative to cya the pharma co. Unless you have underlying heart issues, I'd continue to pursue your current activities as long as you aren't struggling too much. Listen to your body.
A few years back I went through SOC and my Hgb hovered in the mid to upper 10's. I cycled frequently prior to tx and around 3-4 weeks into tx I had to back off the faster rides. I tired more easily and the heart rate increased while trying to maintain a normal pace. I continued to cycle 25 miles or so a few times a week and knew when to back off if needed. My Gastro and Hematologist were encouraging the exercise, but I didn't consult with a cardiologist. I saw many positive benefits from exercising and would have probably been slightly depressed if I had become a total couch potato. There were days were I was too tired to get out - the interferon and riba combo was nasty stuff, but I did manage to SVR, so I have no regrets. Let us know what the cardiologist tells you. Good luck.
A few years back I went through SOC and my Hgb hovered in the mid to upper 10's. I cycled frequently prior to tx and around 3-4 weeks into tx I had to back off the faster rides. I tired more easily and the heart rate increased while trying to maintain a normal pace. I continued to cycle 25 miles or so a few times a week and knew when to back off if needed. My Gastro and Hematologist were encouraging the exercise, but I didn't consult with a cardiologist. I saw many positive benefits from exercising and would have probably been slightly depressed if I had become a total couch potato. There were days were I was too tired to get out - the interferon and riba combo was nasty stuff, but I did manage to SVR, so I have no regrets. Let us know what the cardiologist tells you. Good luck.
Thanks Hector, So I guess the part I was/am a bit confused about is that in the lab report the normal range for hemoglobin is 13.8 -17.2 I assumed anemia started at 13.7. Is it that there is a level where one can be below normal but not anemic?
Thanks Nan, That is very helpful. It never occurred to me to ask the cardiologist..duh! I have just sent him an email. I suspect he will tell me to keep going as long as it feels good but I will abide by his advice no matter what.
I would check with the cardiologist for his/her opinion. You wrote that "you have always been active so skiing this much is not new to me".
What is new to you is that you may well become anemic as a result of the Ribavirin. I would think exercising is fine and even good for you but I think you probably shouldn't push yourself as much as when your hgb was at 15.5.
It's not forever and hopefully when you reach SVR. you will beat out even those 30 years younger! :-)
All the best as you move forward.
Nan
What is new to you is that you may well become anemic as a result of the Ribavirin. I would think exercising is fine and even good for you but I think you probably shouldn't push yourself as much as when your hgb was at 15.5.
It's not forever and hopefully when you reach SVR. you will beat out even those 30 years younger! :-)
All the best as you move forward.
Nan
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Anemia is hemoglobin <10 g/dL. You are not close to being anemic.
Anemia is a condition in which the body does not have enough healthy red blood cells to supply oxygen to body tissues. The symptoms of low hemoglobin and anemia are fatigue and loss of energy which can be combined with shortness of breath. So some people can feel a lack of energy as their hemoglobin get lower. They don't have to be technically anemic.
Since you are not taking peg-interferon you only have a small chance of becoming anemic taking treatment.
In the trials 650 subjects received SOVALDI + ribavirin (RBV) combination therapy for 12 weeks. 250 subjects who received SOVALDI + ribavirin combination therapy for 24 weeks.
Data from the Sovaldi/Ribavirin clinical trials showed only 8% became <10 g/dL while treating for 12 weeks. 6% became <10 g/dL while treating for 24 weeks and
The most common adverse events (≥ 20%) for SOVALDI + ribavirin combination therapy were Fatigue and Headache. NOT anemia. Anemia was the 6th most common side effect after Insomnia and then Pruritus (itching).
To learn more about Sovaldi/Ribavirin treatment read the label to learn about treatment and common side effect from treatment or consult with your hepatology NP.
Sovaldi label can be found here.
http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf
Live your life!
Hector