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Author Topic: Mayvret debilitating side-effects, 3 months out  (Read 1387 times)

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Offline thingsbuilt

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Mayvret debilitating side-effects, 3 months out
« on: December 27, 2018, 03:09:29 am »
Has anyone had this much of an issue with Mayvret?

 My partner of 19 years took a two-month course of Mayvret 6 months ago, with few side-effects. (he's had non-symptomatic Hep C for more than twenty-five years)...

After I fininshed my Hep C treatment on Harvoni (with my surprise joint pain and fatigue, and 'coincidental' Osteo-arthritis diagnosis)..  he was talked into starting Hep C treatment by his doctor.... and his course of Mayvret was uneventful--until it ended. Then, the 6 am migraines began. The noon headaches and fatigue began. The evenings... well, he was asleep.  Until 4 am when he was woken up with a bad headache. This goes on still.  (He grew up on a farm in Indiana, and he has never had a cold or a proper headache, as far as I am concerned!) So, this is all new to him. And me. I've had the market cornered on headaches for all these years.

 He is a theatrical lighting designer (which means getting up on 12-foot ladders, hanging lights all night and into the morning, on deadline).
Now he has no energy. He gets up, takes a handful of Tylenol, and goes back to bed. (by a handful I mean four half-tylenols).  I can almost recall the day he stopped being able to do anything more physical than walking the dog around the block.

I complained loud enough to his doctor in Los Angeles to get him seen, and they did a battery of tests but found nothing. I complained again a month or two later and they have called him but he did not pick up (he was sleeping all day).  Also, this
has brought on depression which really feeds into his not wanting to call the doctor back. (also, the doctor is cluless, plus it is a Medi-Cal/Medi-Care insurance situation-- so his doctor has exactly five minutes for him. We're not stupid.).

I know that side effects are not a doctor's best friend, but I wish I knew what is happening. He used to have boundless energy (and we are old, so energy does not grow on trees). But now he will wake up at 5 or 6 am with a severe headache, and take a bunch of tylenol and go back to bed. Then more headache at noon.
He grew up on a farm and has never had a headache in his life (unlike me).

Why is this happening 3 months out from Mayvret? He says he has enough energy to go one place in the car,  and then it drops to zero.
Back in the 90's when I suffered severe headaches (at Kaiser) they gave me Fioricet. Now, nothing like that is even allowed. (the whole "Opiod Crisis!!!")

What is going on with Mayvret? This medication has cost him work, and has ruined his daily life. (Before it, he was asymptomatic Hep-C, so he always put off treatment).

He got talked into this course of medication by a doctor who just may have been worried about his well-being, or pressured to give it out because everyone in the clinic is "on the program."  Forgive me if I sound alarmist. There is just no post-Mayvret information out there so far.  If there is, please tell me!

I finished a 3 month course of Harvoni a year ago, and the side-effects were awful. You can live through them, but they were like being hit by a truck every morning.
I have Osteo-arthritis now (but not RA, so far..). Those bad knees and ankles and lower back problems never went away. And I work in the theatre, so it is mainly physical. I can't do any of that work anymore. I AM SURE IT WAS NOT RELATED TO
HARVONI, JUST A COINCIDENCE! lol.

Will Mayvret render my partner incapable of any physical work (theatre-related or landscape-related)... just to get rid of his Hep-C?

 He was always asymptomatic before this).

Now we just try to get into the clinic every other thursday, where there is always a wait.
And his doctor will call the specialist at Cedars-Sinai, who will tell him that it may last for 3 or 4 or 6 more months. So helpful!!!

I am sorry to sound so desperate. I just can't watch someone energetic (albeit annoying) turn into someone who is basically walking the apartment like a ghost.

And knowing that we are associated with a clinic that has paid little attention to his issue. I think he needs  CT-scan. He thinks he has blood-sugar issues.

Not much information from Mayvret. 

I hate writing this. I am sorry.

steve
 Los Angeles

(edited to remove name of clinic)
« Last Edit: December 27, 2018, 04:34:56 pm by thingsbuilt »

Offline Lynn K

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Re: Mayvret debilitating side-effects, 3 months out
« Reply #1 on: December 27, 2018, 04:28:50 am »
This is one reason we exist is as a safe place to vent so no worries.

I am just very concerned about what could be causing his headaches as they sound like a very worrisome symptom of something.

It does sound like something is going on. I certainly hope his doctors can find the cause. I mean I don’t know that his hep c treatment did or didn’t trigger what ever is going on but that really is kind of in the past now. It does sound like something specific could be causing this hopefully with further testing they can find the root cause of his headaches and effectively treat it.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline LindaBalz

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Re: Mayvret debilitating side-effects, 3 months out
« Reply #2 on: December 28, 2018, 01:20:49 pm »
Many people finish this drug and go one to feeling back to normal. Every one is different! 3 weeks to go....hope I will feel like what I should feel at 62 and in otherwise good health. Not too many sides...just tired.


Hope your friend gets to the bottom of this!


Linda B
LB

Offline andrew j

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Re: Mayvret debilitating side-effects, 3 months out
« Reply #3 on: December 29, 2018, 06:14:32 pm »
Hi Steve,

Most people experience few - and only mild, side-effects.
Typically, it's a few transient headaches, a bit of nausea - and some muscle and joint pain.
Others have a less easy time - but soon recover once Tx finishes - and a small group experience more extreme side-effects.

When you think about it - our bodies are going through a profound transformation during Tx as we - and particularly our immune systems, try to re-adjust.

You seem to be doing all the right things (exploring every medical avenue you can - and not letting this thing go).
... You could also contact the FDA, and the manufacturer of Mavyret (AbbVie?) - and see if they can provide you with any more info.
There may also be a support group you can join - as, unfortunately - a few do experience these adverse reactions.

I'm sorry that you and your partner are having to go through this.
Unfortunately, there seems to be no quick fix available yet.
You may just have to tough it out.

All the best,

A.

(P.S. In case you want to reply - I can only get to a computer occasionally at the moment).


Offline thingsbuilt

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Re: Mayvret debilitating side-effects, 3 months out
« Reply #4 on: January 04, 2019, 01:33:08 am »
I remember he said something about reading old research about the Interferon treatments (before these new drugs). Some doctors suspect that it triggered
Chronic Fatigue Syndrome (he has almost all the symptoms of CFS).
These new drugs haven't been around long enough to study the long-range effects.

He requested lab tests last week from our clinic, and they came back positive for 'anemic' but everything else was unremarkable.

He gets seen tomorrow, so maybe there will be some answers.

Thanks

Offline andrew j

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Re: Mayvret debilitating side-effects, 3 months out
« Reply #5 on: January 05, 2019, 04:05:10 pm »
I am tired all the time.
I figure it's just my body calming down after years of unwellnes (and some other stuff) ...
Or ageing ... or something? ...

Hoping that you got something from your Drs visit.

A.

 


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