I have been experiencing left shoulder issues and occasional hand and knee pain. I'm also experiencing some moderate undiagnosed burning and numbness in my feet. These issues of mine do not seem to be related to Harvoni tx, and I had them before the start of tx. The shoulder and foot issues are ongoing, but the others seem to come and go, and often seem to be consequences of activities that I've over-done without being sensitive to the signals. I'm about your age and I'm learning as I grow older that it's become important to make sure I move "correctly" when working, and pay attention to any signs of discomfort that crop up during any sort of repeated movement. I can only guess at the severity of your symptoms, which might be entirely different from mine, but I'd be inclined to be conservative (till SVR is established?) about any drug treatments that you judge not be absolutely necessary to mitigate your discomfort. Hope you'll find relief soon.
-- Edited by MikeH on Monday 7th of December 2015 01:08:39 AM
-- Edited by MikeH on Monday 7th of December 2015 01:16:28 AM
Tig said
Dec 2, 2015
Hey Dave,
Sniveling aside, I understand your concern. I would be very cautious too. Have you called Gilead and discussed this with them? This is a very real question and concern that should've been considered at some point during the trial process. It's worth a shot.
Is it possible to treat the pain symptomatically (anti inflammatories) until you've firmly established your SVR status? I know there's a window for payment assistance, maybe they would work with you once they understood your predicament. I know how those programs work, but it's worth trying. Don't forget, we've got many other payment assistance programs here on the forum that may be helpful. There's a link in my signature line. That may offer some additional time options.
Keep hanging in there Dave. You're achieving your goals one day at a time, don't forget to look up once in awhile. There's a light shining at the end of that tunnel....
biminidave said
Dec 2, 2015
I know 3 weeks past EOT isn't a lot of time. If my advanced math is correct +12 is still 9 weeks away. (see what I did there?) I was undetectable at 4 weeks, no VL test since then, and no VL test planned by GI until EOT +12. I've had a few full metabolic tests since week 4 and they've shown normal liver function across the board. Better than I've seen in years.
My treatment period was a little different than what many folks share here. Comorbidities probably have more to do with my side effects than anything else.
My biggest problem at this time is hand and foot pain and inflammation. The most probable cause of the pain is that I've had a case of moderate psoriatic arthritis for about 10 years. I had to go off the DMARD I was taking because of elevated enzymes which led to the diagnosis of my HCV infection about 6 months before I began Harvoni treatment.
The big increase in pain didn't start until late in the second week of treatment, so I can't see it as anything but a reaction caused by Harvoni.
The tough part about the whole thing is that at this point my docs don't see any relief coming to me without starting a biologic like Embrel or Humira (TNF inhibitors) which weaken the immune system. Next is that the foundations that offer help with copays usually run out of money in the first 2 or 3 months of the year, so in order for me to afford the drugs I'd have to start them before then.
Even though I was undetected at 4 weeks I won't feel comfy about having reached SVR until +12 week tests. So how do I justify starting a med that weakens the immune system before then, or even after then? My GI says we'll just have to test VL more often after I start the drugs, but hell, getting a positive VL test back after SVR because of new meds pretty much trashes the time and money I spent in treatment. Chronic HCV isn't going to go away again just because I quit taking the stuff that brought it back.
What good are pain free hands and feet if I cause a relapse, and who knows how the TNF inhibitors are going to affect early cirrhosis that has improved greatly since I began treatment.
Questions, questions, questions.... and none of them are easily answered while I'm in the episodic brain fog that has more to do with my anti-consultant meds than anything else.
Guess I'll just have to punt in the blind, and hope the ball comes down between the lines a long way down the field.
Dave,
I have been experiencing left shoulder issues and occasional hand and knee pain. I'm also experiencing some moderate undiagnosed burning and numbness in my feet. These issues of mine do not seem to be related to Harvoni tx, and I had them before the start of tx. The shoulder and foot issues are ongoing, but the others seem to come and go, and often seem to be consequences of activities that I've over-done without being sensitive to the signals. I'm about your age and I'm learning as I grow older that it's become important to make sure I move "correctly" when working, and pay attention to any signs of discomfort that crop up during any sort of repeated movement. I can only guess at the severity of your symptoms, which might be entirely different from mine, but I'd be inclined to be conservative (till SVR is established?) about any drug treatments that you judge not be absolutely necessary to mitigate your discomfort. Hope you'll find relief soon.
-- Edited by MikeH on Monday 7th of December 2015 01:08:39 AM
-- Edited by MikeH on Monday 7th of December 2015 01:16:28 AM
Hey Dave,
Sniveling aside, I understand your concern. I would be very cautious too. Have you called Gilead and discussed this with them? This is a very real question and concern that should've been considered at some point during the trial process. It's worth a shot.
Is it possible to treat the pain symptomatically (anti inflammatories) until you've firmly established your SVR status? I know there's a window for payment assistance, maybe they would work with you once they understood your predicament. I know how those programs work, but it's worth trying. Don't forget, we've got many other payment assistance programs here on the forum that may be helpful. There's a link in my signature line. That may offer some additional time options.
Keep hanging in there Dave. You're achieving your goals one day at a time, don't forget to look up once in awhile. There's a light shining at the end of that tunnel....
I know 3 weeks past EOT isn't a lot of time. If my advanced math is correct +12 is still 9 weeks away. (see what I did there?) I was undetectable at 4 weeks, no VL test since then, and no VL test planned by GI until EOT +12. I've had a few full metabolic tests since week 4 and they've shown normal liver function across the board. Better than I've seen in years.
My treatment period was a little different than what many folks share here. Comorbidities probably have more to do with my side effects than anything else.
My biggest problem at this time is hand and foot pain and inflammation. The most probable cause of the pain is that I've had a case of moderate psoriatic arthritis for about 10 years. I had to go off the DMARD I was taking because of elevated enzymes which led to the diagnosis of my HCV infection about 6 months before I began Harvoni treatment.
The big increase in pain didn't start until late in the second week of treatment, so I can't see it as anything but a reaction caused by Harvoni.
The tough part about the whole thing is that at this point my docs don't see any relief coming to me without starting a biologic like Embrel or Humira (TNF inhibitors) which weaken the immune system. Next is that the foundations that offer help with copays usually run out of money in the first 2 or 3 months of the year, so in order for me to afford the drugs I'd have to start them before then.
Even though I was undetected at 4 weeks I won't feel comfy about having reached SVR until +12 week tests. So how do I justify starting a med that weakens the immune system before then, or even after then? My GI says we'll just have to test VL more often after I start the drugs, but hell, getting a positive VL test back after SVR because of new meds pretty much trashes the time and money I spent in treatment. Chronic HCV isn't going to go away again just because I quit taking the stuff that brought it back.
What good are pain free hands and feet if I cause a relapse, and who knows how the TNF inhibitors are going to affect early cirrhosis that has improved greatly since I began treatment.
Questions, questions, questions.... and none of them are easily answered while I'm in the episodic brain fog that has more to do with my anti-consultant meds than anything else.
Guess I'll just have to punt in the blind, and hope the ball comes down between the lines a long way down the field.
Thanks for listening to me snivel.