New member - starting Sovaldi/Riba treatment this week.gh

tblount said...
It's me again....
I was just looking over the fine - fine print that came with my Sovaldi and noticed something I wasn't aware of. about 2 weeks after taking Sovaldi it may/will slow your heart rate. This may cause the following side effects "chest pains, confusion, dizziness, passing out or near-passing out, memory problems, shortness of breath, tiredness or weakness..."

Agree with MamaLama 100%. On one hand, I think it's great that you are an active participant in your healthcare and are reading the fine print re: your meds. Everyone should be as informed as possible...within reason. On the other hand, be wary of what you hear and read...don't assume anything.

For eg., the FDA warning about serious slowing of the heart rate is specific only to those patients who are taking BOTH Amiodorone (a very powerful and potentially very dangerous antiarrhythmic) and Sofosbuvir (Sovaldi or Harvoni). The warning also includes the other direct antivirals, daclatasvir and simeprevir.
In total, one patient expired and 3 required pacemaker intervention. The rest required only stopping one or both drugs and the slow heart rate and associated symptoms resolved.
Bottom line, if you're not taking Amiodorone, the warning does not pertain to you.

However, as always...if you ever have any serious or worrisome symptoms, you should call your doc or get yourself to an ER.

Here's a link to the FDA safety announcement:

www.fda.gov/Drugs/DrugSafety/ucm439484.htm

_________________________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

Hang in there Rubi and keep swallowing those pills.

I started the same day as you and last week was my worse. I was so sick one night. All my organs felt like sand and had such a heavy feeling that I thought they were about to rip out and it hurt and I couldn't sleep. But I had a pretty quick turn around and I've been feeling stronger since.

If I had to guess I think there is a huge load of dead viral particles that my system is working to remove from my organs. It also seems my ammonia levels aren't as high. Maybe my liver is recovering it's functions and breaking down the ammonia. I do have less brain fog and confusion but I still feel faint and have to take frequent breaks to avoid passing out.

I've been testing the ammonia levels in my saliva since it's about the same as in blood serum. I use the aquarium ammonia test but they only go up to 6 ppm ...which is the same as 60 mgs/dl which is the standard for measurement with blood test. The norms are 20 to 80 and I'm definitely higher than 60 but hopefully I will be able to detect a reduction.

I qualified for free Ribavirin through Abbvie support program and I was approved several weeks ago but my doctor won't / can't finish the final step they need to ship the meds. The doctor also promised to call in rx for Lactulose but the pharmacy didn't get the rx and that was a week ago. They simply don't and can't get their act together. NOTHING in the steps to get cured has gone without me fixing it. Even when they need to fax something they fax to the wrong number and forget it. I just don't see how they actually treat anyone. Their essential job is to correctly diagnose and then prescribe medication and they have never been able to do the rx part correctly with the first attempt. They never heard of following up on paperwork or checking to see if a patient got any Rx filled.

I think this med has reduced my viral load and I'll be getting stronger but I still have to deal with the side effects of the ribavirin. I'm looking forward to a lab test in about 6 weeks to see if I have to continue treatment beyond 12 weeks.

If anyone is taking blood pressure meds let me say that I have monitored my bp closely and I've had to reduce my bp medication by at least 25% or it will get down into the 60's and I'll feel so light headed and have trouble just fetching the mail.

I had a tooth pulled today a couple hours ago and that spoiled my buzz so I'll be on my way and check in later.

One last thing... I WILL absolutely CONFIRM that anyone I come in contact with is free and clear of Hep because I never intend to go through this again and I doubt I would get assistance for any more of this expensive medicine. I have the $8 test kits and so far everyone I've tested except myself have been negative.

I hope you do better. I believe you will turn a corner and start to regain your strength and endurance. Until then we just have to slow down and give our bodies more rest.

The mental part is tough and probably makes sides worse but I try to remind myself that I'm fighting for my life.

You may want to talk to your doctor or a Gilead specialist about reducing
the amount of Ribavirin.... at least temporarily. That is some powerful medicine. I know there are some days that I feel much better until I start taking it.

tblount,
Sorry to hear you are struggling with some symptoms of HE. It is such a difficult part of cirrhosis.

Benzo's, Ambien, narcotic pain meds, and some anti-depressants can make HE so much worse.

Ammonia testing designed for fish aquariums is not the same thing as blood labs for liver disease patients. Please check with your doctor to determine which labs are appropriate for you. We want to be careful not to suggest any do it yourself treatments for serious, life and death complications like HE.

/labtestsonline.org/understanding/analytes/ammonia/tab/test/

Did your doctor suggest lactulose? My husband takes both lactulose and Xifaxan, which seem to be the norm for most with HE. He is now on year 3 with HE from his TIPS (shunt).

Themister has had awful complications from HE. Some of these are, hepatic seizure, where he turned blue and stopped breathing. Fall resulting in broken shoulder. And, hallucinations, inability to operate coffee pot and remote controls, trying to contact the FBI to assist with a terrorist attack...and more. {sigh}

Red meat has been a worst offender for many that post here.

We have spent too many nights in hospitals, due to HE :(

Hope you feel better and more clear headed. And, slay this Hep C dragon! I am pulling for you, tblount. Big Hugs

tbount,
I do understand your frustrations. Are you in the states, t? Do you know the condition of your liver?

We lived in a rural ranch town with no doctor when themister was diagnosed in a routine physical. He had stage 4 cirrhosis caused by Hep C. That was 10 years ago.

We had a rural health clinic with a PA... 7 miles away. The closest regional hospital was 2- 3 hours from our place, depending on the road conditions over the icy, mountain pass. That was also where the closest liver doctor practiced. There wasn't a transplant center in our state.

Themister treated Hep C with the old interferon/riba, twice. Both times he used a combination of rural health care PA and lab tech pulling his weekly labs, and the GI (3 hours away) ordering RX's and needed testing. Luckily, they did talk to each other. It worked out as well as one could expect, I suppose.

He did change doctors between treatment #1 and treatment #2. Both were good doc's, but like yours, one would not return calls and he was slow to submit anything needed. I do understand the frustration with less than adequate health care and hate to hear you feel stuck with this.

Our state did not have a transplant center. So, after themister had TIPS to keep from bleeding to death, he was referred for transplant.

We made a decision to move near a transplant center (3, actually), and top notch specialists. We got the best insurance product for his needs, and one that Mayo would accept.

We both know he will need care the rest of his life, regardless of which side of transplant he is on. Not everyone is willing to uproot their life, nor can they. We almost lost him with a bleed and being 3 hours from a rural hospital was just not good enough.

I really hate to hear stories of less than adequate doctors and care centers fellow forum members experience. Stinks. Even with the best docs and the best hospitals, and excellent insurance...it often seems not enough.

The ammonia number is not as important as knowing if you have HE. IF you do, you want lactulose to treat it. Your method of using fish tank strips to see ammonia is not going to "treat" the problem. I strongly doubt any physician will RX lactulose based on a fish tank test strip. The doctors seem more concerned with symptoms. Some countries have lactulose over the counter. In the states, one needs a doctor to prescribe.

Right now, getting rid of Hep C is the best thing you can do for your health. Always a great day when someone here can say they are now cured! Hang in there, you will be cured of Hep C before long. We care. Big Hugs

themiz... I'm curious, has he been treated and shown "not detected?" If not, won't a new liver be under attack?

Here is something else I think about... the average cost of a liver transplant is $540,000 and 6,000 transplants are done each year in the US at a total cost exceeding 300 MILLION dollars. Wouldn't insurance companies be way more profitable if they organized and negotiated with Gilead to buy enough meds to put a huge dent in the 350+ million people infected with Hep c that a large portion would eventually end up on the liver transplant list?

Pharm companies in India and Egypt cut a deal with Gilead to make the meds for about $1.50 - $2.00 per pill ...and then Gilead gave them the exact formula. Why aren't greedy insurance companies doing a similar deal? I suppose for now they can just deny their patients treatment. But I did hear of one person that somehow got Obama care to pay for their treatment. That's pretty amazing when we read from so many frustrated members who have been denied treatment by their insurance companies... even when in advanced stages.

I'm a Gilead cheerleader, they gave me the meds. GO GILEAD !

Yes, I saw that article earlier but didn't have time to read it all. It's got a lot of good information and it's a tough call about price vs need.

I have to admit I was lucky (if there is any luck in having hep c) I'm 64 and I would have qualified for Medicare next year ...and would have probably been denied treatment. Also, if I enjoyed alcohol and other risky lifestyles my hep would probably have already killed me.

My body has served me well. I could not be out run in distance races by anyone in college my last 3 years or outworked by anyone on any job I have ever had. I even cut a couple hundred loads of paper wood and saw logs up till a few months ago. It makes me sad to feel what my body is going through suffering from the virus and now the treatment.

It's also uncomfortable to even think about intimacy and embarrassing to tell my friends I feel too tired or dizzy to go anywhere or have company. ...and although I've always been mostly happy-go-lucky, the stress of all this - a lot due to the incompetence of the dr and clinic to simply fill a Rx in less than a month and even then only with my excessive pushing and efforts - it does get depressing. Even eating is depressing because I don't want to eat (and most of the food I like is not good for my condition) but I have to eat or the Ribavirin make so jittery that I can't be still if I don't have food in my stomach. I simply don't see how people took interferon and other medications that had much more sever side effect.

I think I'll live but if I don't, at least I'll die with humor, thinking about what a handsome corpse I'll be leaving behind.

Glad to hear from you. Sorry to hear about the misery of the side effects. I know exactly what you are talking about. I'm experience the same sides. In fact I decided to distract myself and write about these side effects I'm experiencing half way through my 12 wk treatment. Here is what I have come up with so far...

Side effects of Sovaldi / Ribavirin - half way though 12 weeks
treatment. Male 64 Genotype 2b Load Count 17 Million

I'll go through the ABC's of potential side effects of the treatment and
rate the severity of my current symptoms.

A. Appetite - NONE One of my biggest challenges is to eat so I don't
get so jittery and nervous and feel my stomach flipping out after taking
the Ribavirin. I always feel "sickly" in my stomach and most of the
foods I like to eat are not good for my condition... ie. fried foods,
foods high in ammonia and sugar.

B. Blood Pressure - (Mild to moderate) I've been on bp meds for at
least 20 years and since starting treatment I've had to closely monitor
and take LESS bp meds so my blood pressure doesn't get so low I faint.

c. Chills - (Mild but present) I have to stay warm or I'll easily start
shaking. It doesn't happen much but one time it took a long time to get
back to normal.

D. Dizziness - (Severe) Right now the dizziness is my biggest problem.
I'm having to spend a great deal of time in bed because standing up and
walking around frequently causes me to almost faint. The severity is
compounded by a tooth infection that I had extracted followed by the
infection spreading to my inner ear. Be careful taking antibiotics with
these other meds. It's easy to give the body too much medication.

E. Eye sight - (Mild problems) My vision, mainly my ability to focus is
noticeably worse than when I started treatment.

F. Fatigue - (Moderate) I'm considering fatigue as the way I feel most
of the time. I'll discuss "tiredness" later, more like "endurance" or
the ability to actually work -before I'm forced to rest to avoid passing
out.

G. Gums, mouth, teeth - (Moderate) I have had a general soreness in my
mouth for the last couple weeks and I had to have a tooth pulled. This
irritation makes it more difficult to eat.

H. Headaches - (Light to Moderate) So far I haven't had really bad
headaches but almost all the time there is a nagging and distractions to
my ability to concentrate. I don't take head meds because most of them
put more stress on my liver.

I. Insomnia - (Moderate) It's not easy to go to sleep and when I do I
almost always wake up about 5 hours later and can't get back to sleep.

J. Joint Pain - (None) Fortunately I haven't suffered from joint pain,
back aches, etc.

K. Kidneys - (Mild to Moderate) I can tell my kidneys are working hard.
I drink a lot of fluids but it seems my kidneys are under stress to
remove ammonia from my body that my liver is not able to break down to
the less toxic ureah. My urine sugar is also elevated, adding to the
stress.

L. Lungs - (Mild to Moderate) I'm having quite a bit of fluid and
coughing up flim some days but that's almost always limited to the
mornings.

M. Mental State, Mood - (Terrible) My state of mind is generally
agitated, compounded with confusion, anxiety and a moderate level of
depression. I'm not suicidal or having panic attacks or crying all the
time but if it gets worse I may be crying sometimes.

It's obvious to me that in addition to the known side effects of these
meds, the elevated levels of ammonia (known to be toxic to the brain)
are compounding the problems. My urine ammonia is at lest
triple (maybe 4 times) the norms. I have been working on that problem
mostly by avoiding foods high in ammonia and will probably start taking
Lactulose. The goal is to eliminate any problems that may contribute to
the side effects of the meds.

N. Nausea - (Moderate to Severe) Yes, pretty bad, always nauseated and
don't want to eat.

O. Orientation, Confusion, Lethargy, Brain Fog - (Sometimes Severe) Yes,
it's bad. Probably the worse side effect of Hep C treatment - except for
dizziness. From all I have read this side effect won't go away for a
long time after treatment is over.

P. Pain in chest, muscles, organs, etc. - (Mild) Except for a couple
times (and some bad headaches) I haven't had a lot of pain.

Q. Quality of Life - (Poor) I could not maintain a job in this state.
I'm probably less than 50% of my normal mental and physical "wellness"
at this point in my treatment.

R. Rash, Itching, etc - (None) Luckily (except for discomfort in my
mouth) I haven't had skin problems.

S. Stomach, Diarrhea, Constipation -(Mild) Still pretty normal except
for the stomach jitters when I take the Riba.

T. Tiredness - (Severe) I'm always tired and get exhausted even walking
to the mail box. When I try to do anything that requires effort I'm
forced to sit down every few minutes and regain enough energy to
continue and I often have to go lay down to recover. I was running a
chain saw cutting paper wood up till a few months ago. Now I can't put
the chain saw in the truck without taking a break.

U. UNCLE ! I'm getting enough of these side effects and want treatment
to be over. I only think about seeing "Not Detected" on my lab report.

V. Vomiting - (Mild) My second and third week I threw up almost
everyday but that hasn't happened in the past few weeks.

W. Wheat and Soy products - I remind myself of the foods that elevate
my ammonia levels and avoid them. I believe that watching my diet alone
has reduced my ammonia levels significantly and cleared some brain fog
although the dizziness is still a major problem.

XYZ... Nothing there but since this is about side effects I'll mention
one positive side effect. I've had psoriasis on my knee (about 3 or 4
inch circle) for at least 30 years and it seems to have disappeared. I
don't think it's just a coincidence.

Final thoughts: If the alternative drugs to Ribavirin weren't triple
the cost - out of my pocket - I would take them instead of Ribavirin.

I'm going to put more effort into finding ways to minimize the effects
of Ribavirin and research my hiney off to find out if there are any ways
to get it out of my body quickly after treatment. I loathe being
agitated all the time.

Treatment for GT 2 is seriously tough but I remind myself that I'm
fighting for my life. Many others have won the battle and gotten CURED.
I will too. And you can be sure that I'll be testing anyone that I
might come in contact with to be sure I NEVER have to do this again.

VirgoMrs... any chance you can talk to experts about possibly lowering your riba dosage? I've read many accounts of patients undergoing treatment having their Riba reduced by their doctors to minimize the severe side effects.

I know you have mentioned that you don't have a doctor who is up to speed on this but I've been able to get answers by calling Gilead pharmacist and simply telling them I need info that my dr can't provide.

Here is the information provided by Gilead about this...

2.2 Dosage Modification
Dosage reduction of SOVALDI is not recommended.

If a patient has a serious adverse reaction potentially related to peginterferon alfa and/or ribavirin, the peginterferon alfa and/or ribavirin dosage should be reduced or discontinued, if appropriate, until the adverse reaction abates or decreases in severity. Refer to the peginterferon alfa and ribavirin prescribing information for additional information about how to reduce and/or discontinue the peginterferon alfa and/or ribavirin dosage.

2.3 Discontinuation of Dosing

If the other agents used in combination with SOVALDI are permanently discontinued, SOVALDI should also be discontinued.

Hi virgomrs...Good to see you post!
Yup, the chronic fatigue is a B*tch...with a huge, capital B. It's been 2 years for me, but I remember it well and not too fondly...lol.
Hang in there kiddo, you're on the home stretch!...only 4 weeks to the finish line.

Your labs are still "ok"...about what's expected given the bone marrow depression and other "nasties" of the Ribavirin . You've lost about 5 grams of hemoglobin since pre-tx (or about 1/3 of your O2/CO2 transport capabilities). You couldn't help but be negatively impacted by this.
I had lost 6+ grams of hgb by the 4-6th week of tx. and I was looking at another 20 weeks...as you may recall...so I opted for the Procrit (Procrit is always a viable option). But, I still maintained the initial dose of Ribavirin and I'm so glad I toughed it out. Yeah, some folks have to reduce their dosage due to a medical necessity, but that's not you...not unless something changes. I can't encourage you enough to stay the course with the current dose of Ribavirin. And just to be clear, I'm not suggesting that you're even considering changing anything.

I can't wait to hear that you're Not Detected at the end of tx. and again 3 months post.
We'll toast each other with a nice cup of chamomile tea...lol.
Hang tough and keep the faith.

_________________________________________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

Post Edited (woofer5) : 11/11/2015 6:38:21 PM (GMT-7)

I'm fogy headed tonight so I kinda got lost there but I appreciate your support.