Author Topic: Irregular heartbeat 6 weeks into Sovaldi/Olysio treatment? (Read 61205 times)

Topogigio · « **on:** July 19, 2014, 09:45:54 am »

Hello all,
I started sovaldi/olysio therapy in may, achieved svr by week 4 (great news), have had minor side effects in first 6 weeks, headaches, a bit of fatigue, no photosensitivity at all though.
However in week 6 i began to experience chest pain, shortness of breath, palpitations, and went into clinic for testing and found out I have an irregular heartbeat which i did not have prior to treatment. I was told by my hep c Dr. to go to ER and sent to cardiologist. I stayed on meds for another 3 weeks and continued weekly tests, and my irregular heartbeat persisted, and then my hep c Dr. recommended I stop the meds altogether.

Has anyone had a side effect related to irregular heartbeat or change in heart rate?

Also, hoping i don't relapse due to cutting treatment 3 weeks short.

lporterrn · « **Reply #1 on:** July 19, 2014, 06:43:07 pm »

I have only heard that happening when either of those drugs are taken with ribavirin. This may or may not be related (could just be an unfortunate co-incidence), but this should be reported to both drug companies.

Questions:
Were you taking any other meds that could have caused this?
Did the irregularity stop when you stopped the meds?

Keep us in the loop.
Thanks,
Lucinda

Topogigio · « **Reply #2 on:** July 19, 2014, 07:41:24 pm »

Hi Lucinda,
Thanks so much for the reply. I saw the same in my research regarding irregular heartbeat when taken with Ribavirin. I'm not on any other meds. I've been off sovaldi/olysio for 5 days and the symtoms still persist. Will provide another update soon. My Dr. also said they reported to FDA already.

FRED220 · « **Reply #3 on:** August 01, 2014, 07:50:42 pm »

When I am stressed I get the irregular heartbeats and then they go away with time. How are you doing now ?

Topogigio · « **Reply #4 on:** August 01, 2014, 08:40:51 pm »

Hi, yes, they are still occuring. I've had minimal exposure to drugs my entire life. I wonder if toxicity levels affected my body's chemistry and led to the arrhythmia. I'll be seeing a cardiologist in a few weeks and will know more. Maybe this will go away with time. Thanks for the note.

Shirleyb · « **Reply #5 on:** September 10, 2014, 01:02:59 am »

I am cured from the hep with s/o and felt great for a minute, but I am having blood pressure and heart rate issues daily. I got so scared last night I called 911. I called my liver dr. And she told me to make an appointment with my pcp which I did for Thursday. She also made me an appointment with a psychiatrist. The hep is gone, but I have spent the last month feeling worse everyday. S/O combo is some potent stuff and no one talks about after effects. I am not sure right now if treatment was worth it.

lporterrn · « **Reply #6 on:** September 10, 2014, 04:36:39 pm »

Although it is natural to assume that these issues are related to medication, it doesn't mean that they are. (Hear me out) Sometimes we develop other medical problems, or we notice them because our hep C symptoms are fading, or we become more active because our hep C is gone. Some people drink after they clear the virus (which I don't recommend - after all, we worked hard to clear hep C, why give the liver extra work?) Plus, we are aging, which means the odds are we will develop other health issues.

My policy is to get a good diagnosis before assuming that the drugs you are on caused the problem. Also, I would not assume this is a psychiatric problem unless you have a history of this. I've seen too many issues dismissed that really required a good doctor's patience and subsequent diagnosis.

Shirleyb · « **Reply #7 on:** September 10, 2014, 06:20:46 pm »

As for drinking alcohol, I'm 16 months sober. I always had lactulose for"as needed", a month ago I was diagnosed with HE so now I'm on xafaxin and lactulose twice each daily. The brain fog is getting thicker, I think that May have something to do with the psychiatrist she's sending me to. I really don't know. All I do know is I did feel great like I could do normal stuff. Well I never built up to it before I began regressing. I see my pcp tomorrow and I hope I remember to tell him about the constant headache, crazy BP and heart rate, fog so thick in my head I can't see straight and of course tiredness. I'm sure I left things out and I will probably remember less to tell him. This is both scary and depressing .

willie g · « **Reply #8 on:** September 10, 2014, 08:29:58 pm »

Thx Shirley, us,I just found out with my halftime visit with my Dr. I was the first he had that had started this s/o. It's so new who really knows the true side effects after. It's great it kicks out the hep c but what if in a year after this I wake up with two heads? Please keep sharing did you say you are 30 days out of treatment? Well for me I guess two heads will be better than one. Just trying to think on the lighthouse. Hope you feel better. Please God take these feelings from Shirley b write now! It is done. Willie ge

willie g · « **Reply #9 on:** September 10, 2014, 08:33:35 pm »

Think on the lite side not lighthouse( this kindle automatically puts in a word if yours isn't perfect,I guess lighthouse was the winner for today Willie g

Shirleyb · « **Reply #10 on:** September 10, 2014, 09:12:12 pm »

I finished s/o April 24 and declared cured the second week of August and that is about the time the HE, I suppose, is gonna kill me now, if my heart doesn't explode first. Hopefully tomorrow my pcp can help get what's going on leveled out. This probably isn't after effects of s/o, it's probably a bad azz bout of HE. I read something just now on HE online and was shocked. I have undergone severe personality change without knowing it. I have become a ...itch that is always right and I have gone so far as to call my husband a liar. He and I have been having screaming matches and I can't control mine even tho I want to. He has no excuse, I feel. I don't know where to go, I can't find a forum discussing this stage of my hep c aftermath.

willie g · « **Reply #11 on:** September 11, 2014, 05:01:26 pm »

SHIRELYb you are sixteen months sober, and you have done that one day at a time and that in itself is a life changing and glorious event . i am an Alcoholic and have been at sobriety for 27 years. i started when my daughter was born, i had 10 years sober with my daughter and family and have had many other months and years sober,and i will keep trying one day at at a time forever but i remember my first two years before i could even put 10 together how what a roller coaster of a ride those first two were. you have just went thru allot with this hep and you have completed your treatment FOR YOU first and others second. just like the drink or the drug we have to want to do it for US first. its hard on our loved ones and yes we do and so do they become different people. We Change but there are still days we go into those old behaviors where what we say or they say "is the last thing we mean" There was a sticker on my mirror for years that said "your looking at the problem". as the years have worn on just like that sticker things have been removed and my new sticker says ''your looking at the solution". do you know how many mirrors i broke in my heart before i could even consider putting that new one up.especially being able to do that knowing my family now feels I Can have the right to express that? that in it self is a miracle. NOW BACK TO,,'' WHERE DO I GO'', AA, ITS FREE, ITS THE BEST PLACE FOR LISTENING AND VENTING and your a member right off the bat.The only requirement for being able to go is The DESIRE, to stay sober. that's it, and i mean that's it. I don't know if you have ever been but if you haven't what a gift your missing. thousands of meetings all over the world ,all different times, and no judge or jury.You just have to walk in the door and sit. Listen don't listen,SHARE, DONT share, that's whats great.WANT YOUR LIFE to get better in every area? than go, or go back or whatever but YOU do have a way out and if you choose that everybody around you gets better too, booze can be the ALL PURPOSE REMOVER, it removes family, it removes houses, it removes LOVE, yes for ME and other alcoholic's it IS ''the all purpose remover. GO, don't put it off, FOR YOU. Willie g its just for one day at a time Love and prayers go with you. JUST,Willie g

Testiva · « **Reply #12 on:** September 23, 2014, 01:49:47 pm »

Hi, I'm in day 18 of my S/O (no riba) and I'm 57 years old and had hep c for over 30 years. A biopsy revealed A3/F2. After 6 days of S/O regimen, my viral load went from 900,000 to 127.

In the past, heart flutters have bothered me. In fact, I went to see a cardiologist twice because of this but each time I wore the "take home" EKG instrument I had no flutters. I also underwent two treadmill tests and on one of the test, AFTER the tech turned off the recorder but the instrument was still running I had a minor flutter and the tech said it was a "flip" whatever that means. When he told the cardiologist, he simply said, "If it was just a flip, I'm not worried about it".

Before treatment I would have a flutter about once every month or two, but now I'm having two or three every day. It is very frightening to know that this cure may cause damage to my heart. I was informed to drink plenty of water, but now I've decided to drink a 50/50 solution of water and Gatorade because I don't want to deplete my body of the electrolytes that the heart needs to conduct electricity.

It makes a person feel as helpless as a new born baby.

lporterrn · « **Reply #13 on:** September 23, 2014, 06:09:05 pm »

Hi Testiva,
I find heart issues especially bothersome because I can't tell what is a heart rhythm issue and what is anxiety about a heart rhythm issue. Also, I have learned that although my cardiologist is not worried about my heart, I needed to understand why, so I too could learn what was something I should be concerned with and what I shouldn't, and do this when my heart is pounding through the chest. Bottom line - talk to your doctor.

Finbar · « **Reply #14 on:** September 28, 2014, 06:58:04 pm »

Hi I also have a problem with Rapid heart rate not irregular beat , which is very annoying. I spoke to my doc and was told regular heart rate can be 60 to 100 a minute . He wants me to do 24 weeks on S/O but I'm not going to as the difference in the success rate is 12 weeks 93 % 24 weeks 100 and if your on this stuff that long who know what the withdrawal will be

steve · « **Reply #15 on:** September 28, 2014, 09:06:19 pm »

I had a reaction to s/o one day 6 or 7 weeks in . I woke up all sweaty, with high blood pressure 171/110 and I do not have high blood pressure, I thought I was having a heart attack so I went to ER and after blood work, ekg and 4 hours I was told I probably had a reaction to the meds and as soon as my BP was normal they sent me home and only had a similar reaction the next week for a day but I didn't do anything and now I am on the last week of treatment with zero side effects. Hope this helps you

FRED220 · « **Reply #16 on:** September 28, 2014, 09:46:31 pm »

Hey Steve, did they prescribe anything for you?

steve · « **Reply #17 on:** September 29, 2014, 09:31:33 am »

not a thing

Testiva · « **Reply #18 on:** October 09, 2014, 10:22:59 pm »

I'm on day 34 now and I just got back my day 31 labs and I'm undetected. I had a couple of heart flutters today, but this time I'm wearing a heart monitor--its one of the new type with no wires just a small unit that firmly tapes to the upper chest area with a button in the middle you can click if you feel an advent come on. My ALT is 11 and AST is 17. I'm taking 4 mg of Ativan each night to cope with the stress so that's why my AST is slightly higher that my ALT, but without Ativan, I don't think I could tolerate the treatment. I passed a stress test and had blood work to see if I were having a cardiac event but all came back negative. I know that this treatment is affecting my heart but maybe not to the point of severe damage. My vision is also becoming blurry and since I have vision problems anyway, I can really notice any decline. I just pray that I can make it through this treatment.+

badbradley · « **Reply #19 on:** October 09, 2014, 11:01:47 pm »

Testiva,
"Undetected" - That's AWESOME !! Hopefully with that you can rest a bit easier.
I never seen ALT - 11. That's great! Try to relax. Keep updating. I'm also undetected 4 wks. S/O-almost 2/3 finished. Start 3rd bottles tues.Happy for you!

Testiva · « **Reply #20 on:** October 21, 2014, 08:20:01 pm »

I got my results from the take-home ekg monitor and it picked up ventricular tachycardia. My Cardiologist wants to do a Coronary Computed Tomography Angiogram with contrast and an echocardiogram of the heart. I also read in another post that 19 people have died due to cardiac event using S/O . I pray to God that I'm not one of them.

lporterrn · « **Reply #21 on:** October 22, 2014, 12:52:59 pm »

Hi Testiva - do you have a link to that research? I did a search, and can't find any deaths attributed to S+O.

When reviewing data, we have to be careful. For instance, the S+O data often includes ribavirin, a drug fraught with side effects. So if you aren't taking ribavirin, look for data that applies to your case.

Also, keep in mind that S+O is nearly always used for pre-transplant (and some post) patients, so we are looking at those who are at risk for serious medical problems. When reading data, it isn't enough to read that someone died - read why they died. Example: The one death among all of the sofosbuvir treatment groups was determined to be caused by heroin and cocaine overdose on day 1 of treatment.

Here is a recent analysis: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976205/

penny · « **Reply #22 on:** October 25, 2014, 10:20:43 pm »

Quote from: lporterrn on September 23, 2014, 06:09:05 pm

I have learned that although my cardiologist is not worried about my heart, I needed to understand why, so I too could learn what was something I should be concerned with and what I shouldn't, and do this when my heart is pounding through the chest.

Hi Lucinda
Did you have heart pounding before or during the S/O? Do you still have it?

lporterrn · « **Reply #23 on:** October 26, 2014, 10:55:40 pm »

I didn't take S/O - but there is at least one other person on this forum that reported this. Talk to your doc - request a CBC.

Testiva · « **Reply #24 on:** October 31, 2014, 06:52:04 pm »

The guy that reported the deaths due to S/O was a member of hepcforums.activeboard.com and he said he got the info from a site called adverseevents.com

penny · « **Reply #25 on:** October 31, 2014, 09:49:31 pm »

Testiva, did your tests turn out OK?

DesertGuy · « **Reply #26 on:** November 01, 2014, 08:24:01 am »

yep, stress==irregular heartbeats. High stress for me this past weekend, and two skip beats took me to my knees. Felt a lot like my H A I had in2002. I have Brycardia and could be a candidate for a pacemaker. Dr. never said anything about avoiding stress. Of course he never said anything to me about how to handle this treatment.

Testiva · « **Reply #27 on:** November 02, 2014, 09:27:57 am »

I was diagnosed with ventricular tachycardia. Like I mentioned earlier, I used to have a flutter once every 2 or 3 months, but on treatment they increased 20 fold or more. I stopped treatment early. I have a viral test due next Friday and this will be EOT + 22 days. I'm keeping my fingers crossed.

penny · « **Reply #28 on:** November 02, 2014, 02:03:30 pm »

So sorry to hear about your tachy but am hoping you get cured of the virus. Do you think Olysio was causing this?

Testiva · « **Reply #29 on:** November 12, 2014, 07:37:13 am »

I stopped treatment at week 6 due to heart issues and the weird "bad trip" feeling that the meds were causing. I had blood work done on 11/7/14 which was 22 days after my last dose and my ALT was 7 and my AST was 15. I do not have the viral load test as of yet. But one would assume that with those numbers that the virus should be either gone or extremely repressed.

The irregular heart beats have gone away for the most part, so one of the drugs was the culprit.

Testiva · « **Reply #30 on:** November 12, 2014, 10:16:25 am »

Just got my EOT+22 days viral load and I'm UND! I know I'm not out of the woods yet, but I now have great hope for SVR.

penny · « **Reply #31 on:** November 12, 2014, 11:45:10 am »

Testiva I am so happy for you. Let us know what docs are doing about your heart. What are the next steps.

Rubye · « **Reply #32 on:** November 12, 2014, 07:00:19 pm »

I'm on week 8 of Sovaldi and Olysio and have been having a very hard time. A couple of weeks ago my heart was going through a couple of minutes of beating really fast and then would go back regular, off and on. This happened for a couple of days and my BP was 180/90 one time and 175/85 a couple of days later. Now, it is okay again. Well, 155/ 70 - good enough. Plus, I get out of breath very easily. But the weirdest symptom is that whenever I go into a store I start sweating like crazy. Outside in the cool air I'm fine but it's like the heat throws things off and as long as I'm in the store I'm sweating - to the point where my head/hair is soaking. Anyway, I'm undetected and have good labs but I still worry. Well, only one more month to go. Oh, I have labs and see a hep doctor on Monday so feel safe enough.

This whole trip has been very difficult for me and I was thinking about asking for 24 weeks due to the FDA's approval but don't really think I could handle another 12 weeks to tell you the truth. The odds from COSMOS I read were 86% SVR with 12 weeks and 100% SVR with 24 weeks. I wonder what the odds would be with only 8 weeks.

penny · « **Reply #33 on:** November 12, 2014, 08:36:30 pm »

So sorry to hear this. I heard about people having hot flashes and flushing and Olysio has a sun sensitivity thing too. A few people said they had BP spikes too but then it went away. Good luck.

steve · « **Reply #34 on:** November 13, 2014, 09:28:21 am »

I had 2 episodes of that but they went away after 1 day . I am 6 weeks post treatment with zero withdrawal symptoms from sol/oly

willie g · « **Reply #35 on:** November 13, 2014, 12:59:15 pm »

I think I have no side effects,, I cant remember lol I don't glow in the dark so much and I use my coffin less,, ''just'' Willie g

lporterrn · « **Reply #36 on:** November 14, 2014, 01:34:32 pm »

Testiva and everyone following this thread:
I have done fairly extensive research, including looking at the Adverse Events website Testiva mentioned. I looked at all the post-marketing data I could find, and I am seeing nothing on this. In fact, it looks like these drugs have a lower than average risk of cardiac problems. (We often forget that hep C raises our risk of early death from cardiac disease.) No reported cardiac deaths related to S+O.
Here are some of my theories:
1) These problems are occurring, but we aren't reporting them. So, please report them: http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/
2) The meds are making us more aware of a pre-existing problem or intensifying a pre-existing one. Like me, some of you said you had an occasional flutter before, but you felt the meds made it worse. I wonder if I was more vigilant while taking meds, and the meds just pushed me to pay more attention
3) It is coincidental - minor heart rate problems are very common, especially among Baby Boomers.

I like theory #1, but until I have evidence, I am not forming any conclusions.

lporterrn · « **Reply #37 on:** November 14, 2014, 03:03:22 pm »

I just found this late-breaking abstract from the recent liver meeting: Abstract # LB35 http://www.aasld.org/livermeeting/Documents/Late-Breaking%20Abstracts%20TLM14.pdf

Quote

No potential safety concerns were identified in this 6-month review of FAERS post-marketing reports of SMV and SOF concomitant use. Because FAERS is a passive surveillance system, one of its limitations is underreporting of AEs. FDA continues to monitor the safety of both drug products.

penny · « **Reply #38 on:** November 14, 2014, 11:27:31 pm »

Lucinda
Can you break it down? Does it mean there could be more S/O AE's but not all are being reported? There were 6 deaths.

Rubye · « **Reply #39 on:** November 14, 2014, 11:58:09 pm »

I would think there would be a lot of unreported adverse events since most people on the new treatments don't know there is a place to report problems to. I didn't anyway. Plus, there are more than likely a large number of us who do not get to see a doctor during treatment. I think many of the clinics are like mine in that they prescribe these drugs and order a couple of labs at 4 and 8 weeks and presumably rely on those labs to know if the patient may have problems.

tesslovesdirt · « **Reply #40 on:** November 15, 2014, 07:38:29 pm »

I finished my treatment in early Sept. I had several episodes of passing out. Broken bones and several black eyes. So far my blood work says I am now virus free. Anyone else have this problem? $:-\$

penny · « **Reply #41 on:** November 15, 2014, 07:49:12 pm »

You were on S/O with or without Riba? What did your doc say about all this? Did they do any heart testing?

willie g · « **Reply #42 on:** November 15, 2014, 08:26:27 pm »

hello,, I have recently decided to do an extensive journalistic view of s/o and other new drugs for the treatment of hepc and what I mean by journalistic view is places and sites and other forums and direct people who are on and who are now off their treatments but I have tried very hard to make sure it is comprehendable for average lay people so they can really understand the study's, the trials, the aftermaths of these drugs and I have done most of it on the internet typing in every scenario and site and drugs and reactions and complaints and positive comments. what I found and you can do the same as I have is by far the positiveness of these new treatments and the adverse reactions are very minimal and I mean minimal and of course I have taken into consideration of the newness of these drugs and treatments so that does limit the COMPLETE scenario of some results but I can honestly say it HAS BEEN POSITIVE in almost all cases. I mean some people that are obese may have certain reactions or folks who had previous minor conditions of certain illnesses but now that they have had extensive blood work, other tests that normally are not done and the fact that a lot of people have not routinely seen drs. only for basic things such as flu's, bone injury's etc. etc. but once my hepc was diagnosed and especially before because of my complaints of pain in side, bad swallowing and sweats my Dr. did all kind of study's ,exams, ultrasounds, gastic tests, I mean so many, I was ready to say frig this but I didn't .SO in the process I found out I was borderline this ,borderline that and then some alarming results that had nothing to do with hepc which of course caused me more stress and thinking of the worst scenarios that could happen to me,, I had an increase of panic attacks , more isolating etc.[ I kinda became my own worst enemy and blaming this and that and no way could I have done anything to bring on these diagnoses that arecoming out of the woodwork] well than I started my hep c treatment which was very scary at the the time. by extremely cutting my coffee intake I was going thru withdrawls on that, my now no soda i enjoyed so I was sleeping less in some cases and way to much in others plus now I was home most of the time isolating and I DID notice some heart flutters and unusual not being comfortable in my own skin. well, being home I finally realized I was drinking more coffee eating too much of sweets [which I always did, give me a good pie and say goobyelol] then I got on forum and saw I should be eating better, drinking more water, drinking less coffee,, I mean I just started becoming a health nut overnight,, no more two sodas A day , no more occasional cigar and all the other GOODIES in life..well guess what else I figured out was I was literally putting my system in schock, and withdrawl, and Thanks to GOD I guess I got to look at that,,just figure, stop the pop, drink more or a lot less coffee, hardly anymore sweets,[rice and yougurt, rice and bannas, I mean I made menus that were extremely healthy which I had never done and I did that for 12 weeks and when I first was diagnosed with a ll this baby boomer crap or whatever it was.[I just figured it was a conspiracy for these drs and insurance and pharmaceutical companys that were taking advantage of me,[hey not that that does happen but I took it to another level cause I like to lay in bed and DWELL DWELL DWELL]all I'm trying to say here as in no way am I a professional or great guru which by any means am I even close. just MY opinions which sometimes has my head spinning saying to myself ''where in the hell did that idea come from!?[I have a lot of those moments lol] Bottom line if I helped one person or a friendly dog than so be it. these are my thoughts at this current moment and I hope anyone with questions of this or that and don't feel they are getting good results from drs.. or other areas is 1=look at everything you put in your mouth [especially are you doing less or more of something that may be trigerring a feeling you are now having which you have never had before [withdrawl etc, be honest with your self and use your gut feeling and common since and doing your own homework on the biggest library ever available to mankind, the INTERNET] just going thru this treatment effects everything, even your bowel movements. now number 2 and this is a big one.. what your feeling and side effects could DEFINITELY be a SERIOUS reaction to these drugs which could now have triggered another problem just waiting to pop outand kick your ass.. I have one now and I have tried to figure this figure that but bottom line I now have it so ''Now becomes another journey which can go one way or another,, maybe that's why I got the hep c as a building block so I can handle my medical issues better lol hell if I know. once again I have been given the rowboat and NEW oars and I guess I have to get rowing again and no matter what don't let it RUIN MY DAY, cause my days just from my so called SHELL is changing at a rapid pace lol well there goes TO MAKE A SHORT STORY LONG I have come thru again!! lol May the Creator be with you as well as I ''just'' Willie g[ I wont PS you lol]

lporterrn · « **Reply #43 on:** November 15, 2014, 11:39:52 pm »

Penny - Basically the US research shows S+O to be safe. I haven't heard about 6 deaths - the package insert says 4 deaths were unrelated.

Testiva · « **Reply #44 on:** November 22, 2014, 01:09:42 pm »

Thanks Lucinda, I just reported my newly diagnosed ventricular tachycardia. Here's another example of proof that something is now wrong with my heart. I have a super-bike (it's a Ninja ZX-14R) with over 200 horsepower at the rear wheel. Before I started treatment it was just a very, very exhilarating thrill to go from 0 to 100 mph in about 4.8 seconds NEVER did I have a heart flutter doing this, but now EVERY single time I attempt this I have instant flutters that cause me to stop my thrill seeking. These drugs have damaged my heart---there is absolutely no doubt about that. Even if I remain UND, I have just traded one condition for another it appears, but I'm still hoping and praying that the damage that occurred will eventually right itself, but I'm starting to doubt it. Even broken bones can heal in 5 or 6 weeks. It has now been 5 weeks and 2 days since I stopped treatment. I had blood drawn for a viral load 2 days ago (EOT + 5 weeks). I will post the results when I get them.

I'm quite sure that in a couple of years from now, those commercials that say, "If you or a loved one have been damaged or death has occurred, please contact the offices of so and so", but these commercials will be talking about Sovaldi and Olysio and maybe all the new drugs that inhibit the virus's ability to replicate.

When you stop and think about it--these are natural processes that the body uses for probably millions upon millions of processes and the hep c virus was just using that as a way to reproduce and once these natural biological processes are inhibited, then only God knows what type of damage may occur. Certainly not the baffoons who prescribe the drugs or even the scientist who develop them.

penny · « **Reply #45 on:** November 22, 2014, 01:20:06 pm »

Testiva
I a so sorry to hear this. I cant believe it! What are they doing about it? Will you need a defibrillator or drugs?Omg

Rubye · « **Reply #46 on:** November 22, 2014, 01:42:03 pm »

I have always been leery of treatment drugs and although I have known I have Hep C for 35-40 years I have never treated until now, and to tell you the truth if I didn't have cirrhosis and feel like I was on the line of decompensation I wouldn't be taking the Sovaldi and Olysio now. I don't know why people who are healthy are taking them to tell you the truth. I would at least wait a couple of years to see how others fend with them. When I was prescribed the drugs I thought someone would advise me of the potential danger of taking these drugs, but I actually never received any warnings or advice. As usual it's all about making money.

That being said, I am fairly intelligent and knew going in that there was a possibility of lingering side effects and figured there could also be dangers such as heart problems. This is just kind of common sense as far as I'm concerned. My bottom line is I don't care about these things because all I care about for now is getting rid of the Hep C.

Obviously Big Pharm's agenda is to get as many people as possible on these drugs as quickly as possible and so they have set up organizations and websites and forums to get people to believe they need these drugs immediately. That is not so. If you are healthy you can afford to wait a bit and see how it goes for us lab rats.

I guess my point in this rant is to say be aware of what you are getting yourself into because the medical community always goes with the okey doke.

Testiva · « **Reply #47 on:** November 24, 2014, 08:26:16 am »

Here's another link to a post where somewhere developed heart problems during S/O treatment: http://hepcfriends.activeboard.com/t56648749/would-those-taking-off-label-sovaldiolysio-with-or-without-r/?ts=1404260869&page=6&sort=newestFirst&direction=next

Scroll down read the posts made by the user Kurt

penny · « **Reply #48 on:** November 24, 2014, 12:05:30 pm »

Testiva thanks for the info. I hope Kurt has reported this to FDA. I don't know but suspect it's olysio. Time will tell. There are some folks on medhelp who report problems too.
Please keep us updated with this.

Testiva · « **Reply #49 on:** November 25, 2014, 11:05:06 am »

EOT + 5 weeks UND. That's great news considering I was only on the meds for 6 weeks. Also, I took my bike out for a power run 0 - 160 mph in about 9.5 seconds and no FLUTTERS!. Maybe my heart will slowly heal itself and I end up clearing the virus too. I'm hoping and praying and keeping my fingers crossed.

willie g · « **Reply #50 on:** November 27, 2014, 12:04:17 am »

YA TESTIVA,i tried doing that speed thing with my Harley Ironhead the other day but my front SKI flew off hit the Lady on the back and her nose now looks like a SKISLOPE,,,,, hang in there and frigg that crap your reading,,, how many times have I said 85% of the stuff we worry about NEVER happens, 5% cause we or our heads cause it and the other 10% we have no control over! so ENJOY THE MOMENT because the most important moment in your life is NOW. IVE BEEN OFF THE S/O TREATMENT over a month now and I don't glow in the dark anymore but I must admit I still like sleeping in my 2x coffin and the girl that use to take my blood still stops by and spends the night in my coffin[I cant believe the chicks out there! im just glad I got the 2x, nice and cozy and you know what we like to do most after weve moshed around abit? WE LIKE TO PLAY DEAD[now that's a RUSH] enjoy your scooter and keep her UP,,,, later '''just'' willie g

BattleTheBeast · « **Reply #51 on:** November 27, 2014, 07:42:57 am »

WillieG,

Happy Thanksgiving to you and yours! Thanks for the giggle this morning; I needed that!!

~Mel~

willie g · « **Reply #52 on:** November 27, 2014, 07:58:18 pm »

KEEP KICKIN BUTT AND TAKING NAMES MEL,,,,,BATTLE THAT BEAST, as JACKIE GLEASON use to say ''TO THE MOON ALICE!!'' ''just'' Willie g may be headin back into the ''no fly zone'' in a few days,,, I want a stop on my way and take the grandkids for a snow ride,, I told them I would,, I have a wood pallet with waxed cardboard on the bottom and then I attach a chain to it and my four wheel drive truck,,[hey I am OLD SCHOOL, and the slots give them a place to hang on] they will love it, grandpa gator [that's me] they say is so cool,,, but wait till their mother LITTLE MOON sees this, she will be either shaking her head or RIDIN WIT EM or telling ME to GIDDY UP,, later PEICE BE WITH YOU.

Testiva · « **Reply #53 on:** December 17, 2014, 11:37:50 am »

EOT + 8 Weeks UND! My heart flutters and chest pain are dissipating. I'm slowly getting over the meds. I believe that the heart arrhythmias that some people are experiencing are due to the protease inhibitor (Olysio). There are several peer-reviewed papers that show protease inhibitors can cause arrhythmias in some people.

badbradley · « **Reply #54 on:** December 17, 2014, 08:25:45 pm »

Hi Testiva,
Good to see that UND! Looks like your going all the way to the endzone! I'm glad your heart issues are fading. It looked serious for a bit. I noticed some flutters early on in treatment for the first 2 wks. Then just a couple of minor little jabs here and there. Glad to be off that Olysio for sure! Hold on to that ball to the endzone.
Brad

zeena · « **Reply #55 on:** December 18, 2014, 12:56:21 am »

congratulations testiva!!!

Lynn K · « **Reply #56 on:** December 18, 2014, 03:04:39 am »

I treated with Sovaldi Olysio from March to June was und at week 4 not much in the way of sides, maybe a headache or two? Played it safe with sun exposure. Unfortunately I relapsed at my 12 week post treatment test.

Started Harvoni Nov 18 for 24 weeks. So far not much in the way of sides same as last time. Haven't seen my 4 week tests yet but the nurse told me that my liver functions have returned to normal range.

However, I will say that I am not very drug sensitive. When I have an upper endoscopy I need extra juice to be sedated. Also several years ago my heart rate has decreased to below 60 at rest so I was not given BETA blockers when I developed esophageal varicies so my only option was banding.

Good luck to all lets slay the dragon!
Lynn

Testiva · « **Reply #57 on:** January 10, 2015, 12:50:37 pm »

***** EOT + 12 SVR *****
I made it to that all important milestone and my heart flutters have decreased drastically. I feel very blessed and I wish the best to everyone in your personal journey to reach SVR.

badbradley · « **Reply #58 on:** January 11, 2015, 01:15:33 am »

Quote from: Testiva on November 12, 2014, 07:37:13 am

I stopped treatment at week 6 due to heart issues and the weird "bad trip" feeling that the meds were causing. I had blood work done on 11/7/14 which was 22 days after my last dose and my ALT was 7 and my AST was 15.
Quote from: Testiva on January 10, 2015, 12:50:37 pm
***** EOT + 12 SVR *****
I made it to that all important milestone and my heart flutters have decreased drastically. I feel very blessed and I wish the best to everyone in your personal journey to reach SVR.
Encouraging news! Thank you for this report. Congratulations!!
Brad

DPM · « **Reply #59 on:** January 15, 2015, 10:31:37 am »

Hello, I got Hepatitis in 1970, liver transplant in 2003, interferon in 2006,that kick my butt! had 2.4 million titers in 8/13 started S/O 4/14 to 7/14. I was pretty active at the beginning of the treatment by the end I was weak. 9/14 I was starting to bring wood home for the winter burning. I was having shortness of breath an my heart was trying to explode. I have had a heart exam done, found 60% blockage with coronary artery disease, failed a pulmonary test. I saw my liver doc yesterday an ask him about my weakness. He told me it is because I'm getting old (64) and after all these years of harsh drugs that I'm just hitting a wall !!! WHAT I think it is BS but what can I do now

Chelle · « **Reply #60 on:** January 30, 2015, 09:34:15 am »

Hi Everyone- today is day 4 of S/O treatment. I've had heart flutters occasionally before but seem to notice them more since treatment. I'm concerned by some of your comments, so will call my PCP today to get a check up.

Lucinda: thank you for all of you info. Really appreciate it!

I forget who said "I don't know why healthy people would do this treatment." I've been seeing my liver doc since diagnosis after BC chemo treatments (liver enzymes not returning to normal) for 12 years. We never thought I needed treatment until the "better drugs," ie: high cure rate, low to no side effects came on the market. My enzymes recently were the highest they've been with liver Doc tests, so we decided now is the time.

Initially I was encouraged by reading all of your positive comments on this forum. Now, I'm praying I won't have any long-term effects like I have from chemo and cancer treatments.

I have a positive spirit, meditate, am active and have a very healthy diet which I know will help me tremendously. Thanks for everyone's input and wishing all of us well!
-Chelle

LonghornFan · « **Reply #61 on:** February 02, 2015, 11:07:13 pm »

I had to make an unscheduled visit to my Gastro last week because of irritability (week 5 on S/R), only to find my BP 170/70. He put me on Loranzapan to calm me down.

Chelle · « **Reply #62 on:** February 03, 2015, 01:17:18 am »

I saw my PCP today for the heart flutters which stopped a couple of days ago. I thought it might be anxiety form starting the meds. She did an EKG and everything is perfect.

I was running late to get there and then was a little agitated by all the forms I had to complete (again). She took my BP first thing and it was 144/90. My BP is almost always 120/80. I was concerned because I read how several people's BP has gone up on the meds. She took it again and it was still high. She said she'd take it again before I left. Then she did the EKG and told me everything was perfect. She took the BP again and it was 122/83. i was surprised how much it varied in a short period of time. Probably a good idea to have them re-check when high is out of the norm.

I'm sure everyone has ways to relax. Three things that help me are meditation, mindfulness, and creating a gratitude list. If I'm complaining about things, I try to follow it up with a gratitude list which is always longer.

Wishing everyone healthy!

badbradley · « **Reply #63 on:** February 03, 2015, 02:03:16 am »

Hi Chelle,
I also experienced intermittent heart flutters early on. They did gradually subside and by week 3 - 4 they were gone. I am fit and have been very active throughout treatment. I eat a sensible diet and I feel good 12wks post treatment.
Thank you for your well wishes on my test coming up. Best of luck to you.
Brad

Chelle · « **Reply #64 on:** February 03, 2015, 12:42:10 pm »

Thank you Brad! Sounds like you're doing all good things.

Testiva · « **Reply #65 on:** August 14, 2015, 08:32:06 am »

Well, I just wanted to check back in and say that I'm still having heart flutters (9 months post treatment) but not nearly as bad as during treatment. Before treatment I would have maybe one or two strong flutters a year, but now I'm having a couple of flutters every week. So it is obvious to me that Sovaldi/Olysio made this condition worse. Other than that I have minor joint problems and I still have that rather "weird" feeling that I described in an earlier post, but it is less intense or maybe I've become accustomed to it. I can think very well and I'm in good physical condition overall for a 58 year old man.

Cheers,

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