Author Topic: post harvoni treatment, not detected, tiredness remains (Read 25363 times)

Rocket Girl · « **on:** December 09, 2016, 12:03:51 am »

i don't feel better after treatment. very tired. it's been eight months. will this go away
RocketGirl

FutureThinker · « **Reply #1 on:** December 09, 2016, 12:53:21 pm »

Hey Rocket Girl, I, too, am not satisfied with my current energy level. It's been 7 months. Just posted on another thread that my GP ordered a vitamin/mineral blood test that may help her encourage my recovery. I'll share what it shows; she said it takes ~ a month for this special test. I know others have posted such deficiencies post treatment.

On another note -- I just got back from a brief "vacation" of sorts that seems to have helped. It's been a very stressful year, between fighting w/ my insurance co for treatment, then going thru treatment w/ all the fears/uncertainties of taking a new drug, and dealing w/ a never-ending home improvement project that has had one problem after another. I realized on this little vacation how much I REALLY did need to get away, even if for only 5 days! So, consider this if you can.

I think for many of us, this is just going to take time. But here are some considerations for you. FT

Rocket Girl · « **Reply #2 on:** December 09, 2016, 07:43:16 pm »

FT, thanks so much for the info. My Kaiser Dr. made it very clear he was not treating me during therapy, but i will find a way to get those tests you mentioned. i have a lot going on as well. My husband's memory is going. hoping to see family in florida first part of next year. i'm not sorry i did therapy but i felt better before i started. i hope your right about taking time. looks like we started around the same time. i hope your labs reveal something that can be fixed and make you feel great again. please keep me posted and i will do the same.
RG

Rocket Girl · « **Reply #3 on:** December 09, 2016, 07:48:55 pm »

FT, what were some of the deficiencies others had mentioned? thanks.
RG

andrew j · « **Reply #4 on:** December 10, 2016, 01:42:18 am »

Hi Rocket Girl,

Just a suggestion:

If you continue this thread, or start another one, in the right section i.e. in the 'Post Treatment' section, you might attract in more punters.
I think a lot of people would like to contribute.
There are quite a few of us with post-treatment issues.

... Whatever - I will post soon.

Best wishes,
A.

Rocket Girl · « **Reply #5 on:** December 10, 2016, 04:16:43 am »

Thanks so much A!
RG

FutureThinker · « **Reply #6 on:** December 10, 2016, 11:32:41 am »

Hey RG, just let me know where you're taking this thread, or posting on an established thread, so I can follow up w/ you.

I think there's been info on vitamin D and magnesium deficiencies...... will have to peruse some of the other threads post-treatment.

FT

andrew j · « **Reply #7 on:** December 10, 2016, 02:54:20 pm »

A new thread on post-Harvoni effects has just started up in the 'Post-Treatment' section.

You could tag onto that if you wanted to?

andrew j · « **Reply #8 on:** December 10, 2016, 06:35:42 pm »

... Anyway - yes - like you I still seem to feel tired a lot, six months or so after finishing Tx.
Don't get me wrong - I feel MUCH better than I did before.
I was full-blown symptomatic for 18-plus years, and that was a miserable thing, I can tell you.
This, now, is a different life!

I don't know what it would be like following Tx if, like you, I hadn't been symptomatic before (?)

Some people put it down to aging (in part).
That's probably a factor.
But also - you know - we have - or I have, anyway, lived for a lot of years in something akin to distress.
Constant anxiety ... constant stress.
God knows what it's done to me emotionally, let alone, physically and psychologically.

(... Made me a better person, probably!).

These meds are powerful.
They have to be.
They're up against a formidable enemy.
Just think about the transformation that has taken place as were going through Tx!

Anyway - I am feeling better all the time (I think?!) ... and I hope you start to feel better soon, too.

I will try to think of some things that might make life a bit easier for you.

Lots of love,
A.

Rocket Girl · « **Reply #9 on:** December 10, 2016, 07:07:30 pm »

Thanks so much A!
RG

KimInTheForest · « **Reply #10 on:** December 20, 2016, 04:34:43 pm »

Quote from: Rocket Girl on December 09, 2016, 12:03:51 am

i don't feel better after treatment. very tired. it's been eight months. will this go away
RocketGirl

Be sure you get a Complete Blood Count (CBC). And be sure to get a copy of the results for your own files. Don't rely on doctor to interpret results for you and tell you if anything needs further attention.

I think test for Vitamin D, magnesium, and possibly serum ferritin would also be useful.

Others on these forums have commented on harvoni being linked to mitochondrial toxicity. That would definitely affect energy levels. Some people here are on extensive supplement regimens to reverse mitochondrial toxicity. I am not much on pills or supplements. But phospholipids are important in repairing mitochondrial damage. Lecithin is a good source of phospholipids. You can either eat foods high in lecithin, or buy lecithin from health food stores.

But really, the CBC is your starting point in determining where to go next.

Keep us posted. And good luck!

kim

andrew j · « **Reply #11 on:** December 20, 2016, 06:46:02 pm »

Thanks for posting Kim - and sorry for not having got back to you sooner, RG.

I'm not so good at alternative medicine / naturopathy / diet etc. - and that's where my mind has been going in reln. to what you posted.
(As I posted above - I have similar issues to yours, I think).

Exercise helps me a lot.

I will get back to you if I think of anything else.

Rocket Girl · « **Reply #12 on:** December 22, 2016, 03:47:07 pm »

thank you everyone! i will look into lethicin. i have a long history of formal excercise but since therapy, hard to maintain 5 days a week. i recently tried NAHD and for 4 days straight i made it to the gym. today i don't want to do anything. very confused. all i know is i felt better before i took harvoni
RG

Gaj · « **Reply #13 on:** December 23, 2016, 12:07:59 am »

Hi RG, a couple of other things to check are B12 and zinc levels which along with Vit D and magnesium are often deficient in people with HCV even with the best diet due to compromised liver function which can remain an issue for some time even after SVR. The liver is a marvellous organ that can heal itself but that won't happen overnight and varies from person to person. We can store large amounts of B12 and use those stores for a considerable period before they become depleted but then it takes a while to replenish those stores. One thing to be aware of is that its presence in vegetables is mostly 'locked out' from our metabolism. It is readily available from many animal products, however if your diet is largely vegetarian then you can use supplements which are correctly formulated to make it bioavailable. Levels of all these vita and minerals can be easily checked via simple blood tests and I would advise this approach if possible to target known deficiencies rather than a scattergun approach.

Also, even those who are asymptomatic prior to tx often still have to live with this disease in the back of their minds for many years and as FT points out often go through considerable stress fighting for access to these meds then the worries of treatment itself and the wait for SVR afterwards and from what you say it sounds like you have additional concerns at home which from my own experience can be extremely draining.

Quote

"today i don't want to do anything. very confused"

Modern life is such a rush and we tend to get caught up in it and feel the need to fill it full all the time without ever allowing ourselves to relax. No wonder we get exhausted! Sometimes we should allow ourselves to have a bit of 'down time' and, most importantly, enjoy that without feeling guilty.

Gaj · « **Reply #14 on:** December 23, 2016, 12:12:33 am »

Hi Kim,

Regarding mitochondrial damage, Antiviral Nucleoside/tide Analogues (ANA) are potentially a culprit here and it is true that some promising experimental and trial HCV medications have been problematic and for that reason they have not been approved for use. Sofosbuvir is in this class of drugs but does not appear to exhibit this problem.

Quote

Sofosbuvir was found in vitro to have a low affinity for host cellular and mitochondrial deoxyribonucleic acid (DNA) and RNA polymerases, contributing to a low overall toxicity profile and differentiating sofosbuvir from other nucleos(t)ide analogue antivirals. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4542085/

On the other hand Hepatitis C itself is a known cause of mitochondrial damage so appropriate diet, etc. may assist to repair or recover from that damage.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705306/

Luna7 · « **Reply #15 on:** December 23, 2016, 10:23:48 am »

Hi Rocket Girl

Dr. Terry Wahls focuses a lot on mitochondrial health:
https://experiencelife.com/article/the-care-and-feeding-of-your-mitochondria/

Apparently a good diet and some important supplementation increases the glutathione so vital for mitochondrial function:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4079069/

I'm having a bit of trouble fitting in the 6 to 9 cups of veggies every day, but it's doable via blending more than half of that into a veggie drink (mainly kale). I take lecithin in addition to the fish oils every day since these fats appear to be so crucial.
I also drink a whey drink in addition to the bone broth, both supplying lots of glutathione enhancing substances.

TC,
Luna

andrew j · « **Reply #16 on:** December 28, 2016, 05:34:41 pm »

Hi RG,

Lucinda (Porter) yesterday posted a piece on 'fatigue' in the 'Blogs' section here.

That be worth having a bit of a look at?

A.

elias · « **Reply #17 on:** December 28, 2016, 05:41:55 pm »

Salt restriction is the hardest of those recommendation for me. Is there a test which can tell you if you're having too much? And if not ,no need to restrict? Such as sodium levels in blood, eg?

andrew j · « **Reply #18 on:** December 28, 2016, 06:10:01 pm »

(Other thread, Elias ?) ...

I have trouble with salt, too.

I seem to consume a huge amount of it (sea salt - if it makes any difference).
I really don't eat anything processed, though -and I think that's where most salt intake usually comes from.

Surprisingly, my Dr. seems relatively unconcerned.
Ditto, a friend of mine, who knows A LOT about dietary matters.

I think the guideline is to try to not exceed 2,000 mg. / day.
I'm sure I'm going through more like ... actually - maybe it's only about 3 - 4,000 mg.

I'd better try to measure it!

andrew j · « **Reply #19 on:** December 28, 2016, 06:22:24 pm »

... My Dr said my sodium levels looked OK.
... and if anything, they were a bit on the low side?!

Rocket Girl · « **Reply #20 on:** December 29, 2016, 02:45:53 pm »

Thanks to everyone! looking into Mitochondria health.
RG

FutureThinker · « **Reply #21 on:** December 29, 2016, 04:43:46 pm »

Hi Everyone, just a little update -- had the blood drawn for this special micronutrient/antioxidant test and should have the results in ~ 2 weeks. The bill was $1500 ---- my insurance co is currently deciding if they are going to pay it or not (hopefully they will!!) -- but I am very interested in what the results will be.

I'll be sure to check back in once I know. I remain optimistic that we are all, at some point, some sooner than for others, going to have bright futures being rid of the beast.
Gotta keep the faith!!!! FT

andrew j · « **Reply #22 on:** December 29, 2016, 05:10:07 pm »

I'd be interested to know how you get on, for sure, FT.

I should get a blood test done, I think.

You've inspired me!

Rocket Girl · « **Reply #23 on:** December 29, 2016, 05:35:13 pm »

Dido Andrew! Thanks FT.
RG

FutureThinker · « **Reply #24 on:** January 14, 2017, 04:23:55 pm »

Hey RG, just checking in to say I'm still waiting for the blood test results; they should be in this week. The holidays apparently added some time. Stay tuned, FT

FutureThinker · « **Reply #25 on:** February 10, 2017, 12:35:49 pm »

Hi RG and others,

It's taken some time for me to get most of the results of the blood tests done in December...... I guess getting labs around the holidays isn't the best idea. My GP's office also seems to have misfiled or lost them, but I've finally received the bulk of it.

PLEASE NOTE: These findings are particular to my body and all but the Vit. D were NEVER tested prior to my HCV treatment. So do not make assumptions that these are due to my treatment, as I am not. There is no way to know this, at this time.

At any rate ----- the tests showed: Low, borderline or abnormal: lipids (to add DHA/EPA (Omega-3) and Vit. B3); Vitamin D (have been borderline for several years, to increase dose & add Vit. K); homocysteine (to add methyl B12 tablet, and recommended to start Vit. B weekly injections).

Just had blood drawn for my last hepatologist appointment in 2 weeks, and I intend to share these results and get her opinion prior to starting most of this, esp. the Vit. B3 and injections (Vit. B3 can be an issue for the liver). Want to make sure my enzymes and VL are still normal and get her opinion on whether she's seeing these issues w/ any other patients.

I do know several other members have posted some issues with B vitamin levels, and D and some other minerals. So it may not hurt to discuss more blood work w/ your doctors if fatigue isn't resolving as quickly as you'd like.

My fatigue is slowly lessening, but is more of an endurance issue now -- I have more energy, but it seems to deplete more quickly than normal, not well-sustained as in the past. I do continue to feel free of HCV, which is good! Cognition continues to be much improved, I'm grateful to say.

So after I see my hepatologist for my last visit and discuss these findings w/ her, I'll let you know what she says. I think we all just want to get our lives back and get on with it!

Take care, FT

gnatcatcher · « **Reply #26 on:** February 10, 2017, 03:24:28 pm »

FT, FWIW, pre-tx my Vit. D. levels were always in the normal range. Post-tx, the Vit. D lab came back with insufficiency (better than deficiency but below normal). It's a puzzle, because I'd continued to drink 3C of milk and to take 400MG of Vit. D3 daily. Not only that, but post-tx I've been eating MORE foods with Vit. D (such as egg yolks), and I used to be in the normal range without any supplementation, so the insufficiency was a surprise. I can't rule out (1) age; (2) a different brand of milk (does it really contain the stated amount of Vit. D?); (3) a different brand of Vit. D3 pills (do they really contain the stated amount of Vit. D3?). Since that lab, I've switched back to the original brand of supplements and increased to 1,000MG. I'll be retesting in mid-March and will be curious to see the result.

Gnatty

FutureThinker · « **Reply #27 on:** February 10, 2017, 08:44:17 pm »

Hey Gnatty -- My GP increased my daily dose of Vit D3 to 2,000 IU 2 years ago, and after this round of tests, has increased it to 5,000 IU w/ the addition of Vit. K, which is supposed to help w/ absorption. I did find it odd that after 2 years of 2,000 IU/day, my level is still at the lowest normal, 30. And this was prior to treatment, AND I live in So. Cal ---- lots of sun here!! So go figure.

I did ask her re: "reputable" manufacturers for these, as I agree wholeheartedly w/you -- you really don't know exactly what you're getting in these pills. She gave me 3 names, I'll PM them to you, as I don't know if I can put that out publicly (?) on this forum. She said they had "more science" behind their products than most. It's just her opinion, but it's the most advice I've gotten on brand names thus far. We'll see what my hepatologist says. FT

gnatcatcher · « **Reply #28 on:** February 10, 2017, 09:17:10 pm »

FT, thanks for the information, including the PM. A few years ago, I came across a study that showed that Vitamin D levels much above low normal (when low normal was in the low 20s) result in increased inflammation. More recently, I read that doctors are divided on the question of whether the current definition of "normal Vitamin D level" is actually too high. I've lived long enough to have seen many formerly touted medical therapies overturned by later science, so your 30 is to me plenty high: it satisfies doctors while minimizing harm should the doctors who think higher levels are bad turn out to be correct.

Gnatty

P.S. Here are links to the articles mentioned above:
http://www.nytimes.com/2012/01/17/health/research/risks-when-too-much-vitamin-d-is-too-much.html?ref=health
http://bigstory.ap.org/article/6da030eb9d95408393201258f925985f/vitamin-d-deficiency-widely-overestimated-doctors-warn (one of many articles with this conclusion)

FutureThinker · « **Reply #29 on:** April 10, 2017, 01:07:58 pm »

Update: I see on other threads that this topic of post-tx fatigue continues.

I started the B12 injections and noticed some improvement in my energy level after the 2nd one, but not after the 3rd........ so I'm going to continue them weekly, along w/ all the other vitamins/supplements I posted earlier and see if they make a long term difference or not. I had an unrelated health issue pop up last month that postponed the injections by a couple of weeks, but I'm now on the regime my GP recommended and will see her in a month or so for follow-up. I think she wanted repeat blood work after ~ 6 months of this regime, so that is still a ways off.

Overall I feel a bit better, certainly not worse, some days have more energy than others, so am just plowing along and hoping to see consistent improvement in the near future. All hang in there! FT

Rocket Girl · « **Reply #30 on:** April 10, 2017, 02:07:29 pm »

Thanks for the update FT!
RG

FutureThinker · « **Reply #31 on:** April 11, 2017, 09:17:58 pm »

RG, how are you doing these days? I saw Andrew j had posted on another thread re: this topic. FT

andrew j · « **Reply #32 on:** April 12, 2017, 07:07:11 pm »

Hi, FT.

How are you doing?
Well, I hope.

I have been following your posts.

I am gradually eating more and more meat (it's still not much) - not specifically for B12 (as far as I am aware) - but really because I just generally feel a need to.

I wonder if energy improves in - subtle ways - and my 'head' feels stronger
i.e. meat seems to help calm residual anxiety and coping mechanism patterns, which I think are still playing out from the Hep C days.

Do you get that?

... Maybe it is the B12 - or other vitamins and minerals etc. doing their thing!

Best wishes, eh?
Andrew.

FutureThinker · « **Reply #33 on:** April 19, 2017, 03:31:30 pm »

Hey Andrew j and thanks for asking -- yes, I do believe I AM doing better! I've had 5 B12 injections thus far, in addition to the other vitamins and supplements I mentioned earlier, and something does seem to be working. It may just be time, or a combo of time and the above, but I can say I do have more energy these days, which is great since it's spring and lots to do out in the yard!

I do believe we all will be whole again following ridding ourselves of this retched virus. It just is going to take some time, more for some of us. Sounds like you are doing better, too!

So it may be worth talking to one's doctor re: special blood tests for micronutrients to see where one is on that scale. As I mentioned earlier, I may well have been deficient in these vitamins prior to treatment. Just glad to be feeling more energy and hoping this continues. Wishing you a good day, FT

andrew j · « **Reply #34 on:** April 22, 2017, 10:54:10 pm »

Thank you, FT.

I'm glad you are enjoying a bit more energy.
Yes - it does seem to be a slow, or gradual process for some of us.

I have just posted on D63's thread in the 'Post-Treatment' section.
An interesting attachment is included in that thread.

Best wishes,
A.

FutureThinker · « **Reply #35 on:** May 17, 2017, 07:26:40 pm »

Just wanted to check in w/ all my buddies here -- today marks the 1 year anniversary of completing my Harvoni treatment! And, I am definitely finally feeling more "normal" so am glad to report on that. Energy level is much better, stamina/endurance more consistent; not sure if it's just time, or all the vitamins and B12 injections, or a combo, but feel I've turned the page. What a year it's been, to say the least!

So all who are still having some struggles, please keep seeking answers. I think it just takes some time for some of us to "get through" the changes our bodies have experienced.

Keep the faith, and the future holds great things for all of us -- it just may take some time. FT

colaa4 · « **Reply #36 on:** July 06, 2018, 01:34:58 pm »

found this thread. i know its 2yrs old. did tiredness ever go away? anyone else have info re tiredness after harvoni and how long it lasts? thx

andrew j · « **Reply #37 on:** July 07, 2018, 08:28:15 pm »

colaa,

As per my other post - it's taken a while for my system to normalise.
Tiredness / fatigue issues have only improved very slowly.
(Again - I'm 2 years-post).

I've been doing physical work for a while (house-painting).
That's definitely helped.

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Author Topic: post harvoni treatment, not detected, tiredness remains (Read 25363 times)