Author Topic: A little short of breath on Harvoni, day 5 (Read 25313 times)

MJ82 · « **on:** August 08, 2015, 04:15:59 pm »

Hi folks,

I started a 3 month course of Harvoni on August 4th (without Riba) for genotype 1a, fibrosis 0 as per my last fibroscan (previously f1) and my last viral load was 223,000 IU/mL.

I am treatment experienced/non-responder with Interferon + Ribavirin about 10 years ago.

I'm on day 5 now, and so far I've been feeling fine through most of the day. I've only noticed some fatigue rolling in late afternoon since day 3 at about the same time each day. I take my pill at 8pm and have done from the start, but the fatigue creeps up before.

Today (and a little yesterday) I've noticed that when the fatigue comes I also begin to feel a little short of breath, though it doesn't last too long.

I just wanted to hear from anyone else who has experienced this - I've read of some other people on the forum who have had this with Harvoni alone, and I wonder how quickly it passed for you during the course of treatment?

Thanks!

philsky · « **Reply #1 on:** August 08, 2015, 05:34:34 pm »

I am 8 weeks give or take in EOT. The fatigue is prolly your body getting back to normal. I had ZERO side effects and I have actually lost a bit of weight post treatment. Give it time, this stuff will save your life. Everyone I know has undetected HCV post treatment and no one I know personally had any side effects. Actually, everyone has had positive comments on life style improvements.

marybarter · « **Reply #2 on:** August 08, 2015, 07:29:44 pm »

There are many people who experience side effects from Harvoni. Ribaviron can cause anemia and anyone who is short of breath should have a CBC.

Philadelphia · « **Reply #3 on:** August 08, 2015, 07:56:40 pm »

My default question would have been "are you on ribavirin" but I can see you aren't.

I'd think about whether there were any precursors for the breathlessness - did you just finish something a bit strenuous? Are you asthmatic? If the answers were coming back as no, you might want to mention it to your doctor.

sickpuppy · « **Reply #4 on:** August 08, 2015, 08:31:04 pm »

You shouldn't be having breathing problems on Harvoni alone.

Please take your pulse and blood pressure next time this happens and make sure it's not heart related. If it isn't, you should probably tell your doctor, but then ignore it if your bloods are fine.

S.Belle · « **Reply #5 on:** August 08, 2015, 09:45:53 pm »

I'm almost four weeks in on Harvoni alone and my only side effect is a slight ringing in my ears. I take it at 4PM and am ready for bed by 11. I also work. Definitely tell your doctor if it continues. Good luck !

marybarter · « **Reply #6 on:** August 08, 2015, 11:57:03 pm »

S. Belle, My doctor told me that Fibrosure scores are inaccurate but they use them because it's easier to get approval for Harvoni. My score was F4 but my fibroscan showed little to no liver damage. You might ask your doctor if he/she has access to a fibroscan because you may not have that much liver damage. This scan changed my feeling about the future! I don't even have to have ultrasounds to test for liver cancer if my viral load stays undetected for 3 months after I complete the Harvoni. Good luck to you and I'm glad you don't have any side effects other than tinnitus.

MJ82 · « **Reply #7 on:** August 09, 2015, 04:56:19 am »

Thank you all for replying - it's not worrying me too much, as it's only something I notice when the fatigue sets in late afternoon. It comes without any exertion on my part, though I feel like I've exerted myself or gone up a few flights of stairs, so I take it easy then.

I am monitoring my blood pressure each day in the morning and at night, and it's more or less fine, no big spikes (or drops) and my heart rate is fine. It seems to be part of the fatigued feeling I get for a few hours before and after my pill at 8pm, but I will watch it and mention it to my doctor if it continues. Thanks

S.Belle · « **Reply #8 on:** August 09, 2015, 06:32:39 am »

@Marybarter I am aware of the differences between Fibrosure and Fibroscan. HepC people are constantly researching.
For Gilead and some insurance companies, that "deceptively" high Fibrosure score is all they need to approve for Harvoni. Some day they may decide that only Fibroscan is acceptable. Then lots of people may be shut out of treatment. That Fibrosure rating is what finally got me approved.
Isn't that what it's really all about - getting treatment, by any means, and moving on with life ?

gnatcatcher · « **Reply #9 on:** August 09, 2015, 11:19:46 am »

In my case, the Fibroscan was higher (F4 versus F2 for Fibrosure). Therefore, it was thanks to the Fibroscan that I got approved for Harvoni. The gastroenterologist said he believes the Fibroscan because of the length of time I've had Hep C.

S.Belle · « **Reply #10 on:** August 09, 2015, 02:04:58 pm »

I had a liver biopsy in 2011 and was F0. Then FibroSure in 2014 and was F1. My last one was F2/F3, so I applied for Harvoni. I guess everybody reacts differently to it and of course medical opinions and egos vary.

MJ82 · « **Reply #11 on:** August 09, 2015, 02:13:02 pm »

Just an update for anyone reading this to say that today I've had no shortness of breath and hardly any fatigue, which makes a welcome change from the last couple of days! I have had a few more headaches lately, but hoping my body is adjusting to the medication. Generally and through most of the day, I feel fine. Good luck to all of you!

MJ82 · « **Reply #12 on:** August 15, 2015, 02:59:07 am »

I spoke too soon - I'm on day 13 of Harvoni and I still get some fatigue in the day, especially after I take my 8pm pill, and it is still accompanied by some shortness of breath.

I will speak to my doctor about it, but I've read a few others in this forum and in a group on Facebook who have the same thing, so it's got me a little concerned now. One person mentioned a decrease in lung function? I'll report back if there's anything significant, but hoping the issue resolves on its own.

sickpuppy · « **Reply #13 on:** August 15, 2015, 05:07:13 am »

The shortness of breath is now happening to me too for the past 3 days. I didn't have this problem when I was taking it at 9.30am, but I switched to 8.30pm. What usually happens is that 30 minutes after taking Harvoni, I start gasping for more air, like I had just went up a flight of stairs, and I get really hot, start sweating.

It usually lasts for 1-2 hours then I go to bed and all is good. I didn't pay any attention to it. Might be TX related, might not, I don't care. I was told I'm undetected at 2 weeks and that's all that matters - to stay that way. I can deal with shortness of breath for as long as it takes.

MJ82 · « **Reply #14 on:** August 15, 2015, 05:14:35 am »

Quote from: sickpuppy on August 15, 2015, 05:07:13 am

The shortness of breath is now happening to me too for the past 3 days. I didn't have this problem when I was taking it at 9.30am, but I switched to 8.30pm. What usually happens is that 30 minutes after taking Harvoni, I start gasping for more air, like I had just went up a flight of stairs, and I get really hot, start sweating.

It usually lasts for 1-2 hours then I go to bed and all is good. I didn't pay any attention to it. Might be TX related, might not, I don't care. I was told I'm undetected at 2 weeks and that's all that matters - to stay that way. I can deal with shortness of breath for as long as it takes.

That's exactly it! I keep telling family that it's like I've gone up a few flights of stairs and need to take a deeper breath than normal. I agree, I'll manage it so long as it doesn't get worse and I'll put up with side effects to clear this virus. I've had it all my life so I'm grateful for this treatment - I do just sometimes worry about lung or heart issues, which I've read a few people have developed on Harvoni, and some of them had shortness of breath. If it continues for me I may raise it with my doctor and get it checked out just to be safe. I wouldn't want serious issues to develop, even while kicking Hep C.

Wishing you all the best.

p.s. I've reported my side effects to the FDA and I think people who experience sides that are not mentioned in the Harvoni insert, should report. It's clear quite a few people have issues not mentioned there.

MJ82 · « **Reply #15 on:** August 15, 2015, 02:43:09 pm »

I just came across this on Harvoni, which mentions less common side effects that effect under 2%, but it does mention respiratory issues among other things on page 9. Someone else on this forum mentioned having diminished lung function on Harvoni which he never had before, so perhaps it's something to bear in mind if our shortness of breath continues, and to report to our doctors for evaluation?

See Table 2 on page 9: http://www.gilead.ca/pdf/ca/harvoni_pm_english.pdf

MJ82 · « **Reply #16 on:** August 21, 2015, 08:00:55 am »

Just thought I'd give an update. Thankfully my fatigue has almost disappeared now that I'm into the 3rd week of Harvoni.

The occasional shortness of breath and dizziness has continued, and my doctor said he had another patient who had these side effects, so he's agreed there's no harm in testing my lung function to make sure everything os okay. I expect it to be fine, but better to check it out to be certain.

the last bout of shortness of breath was when I was at home in the early afternoon yesterday, and I went to check my blood pressure and it was high. So perhaps there's a correlation. An hour and a half later my BP was fine and the shortness of breath had subsided.

I'll come back with an update when I do the test and get results.

MontanaBlue · « **Reply #17 on:** August 21, 2015, 10:17:42 pm »

I'm on sol -rib - geno 3 - week 17 out of 24 - UD at wk4.

My breathing was really bad. My doc gave me Lasix diuretic b/c I was retaining water and the pressure was on my heart n lungs. After taking Lasix feel much better with the occasional afternoon shortness of breath. My labs were fine so it was water retention. Do u feel like you r retaining water? Lasix is approved for rib but not sure about ur meds?

I also have a cool humidifier going all day in my yoga room. When breathing gets hard I sit in there n do breathing exercises. Helps a lot.

Get to know ur pharmacist - he is free n can give u good advice on your side effects. I get my meds from UPS but he is still there for me. Oh and no appt needed. Just don't go when they are busy.

Hope this helps. I'm on week 17 and it's getting easier, but it's been the hardest thing for me to get through these meds.

Also, breath out of ur nose not ur mouth. U will get more oxygen in you lungs.

Hope this helps n breath deep my friend.

MontanaBlue · « **Reply #18 on:** August 21, 2015, 10:23:38 pm »

Also, I had a chest X-ray on lungs for shortness of breath, lungs clear. I also had a Eco gram done on my heart. Heart is fine. It's the meds. Just sit down n breath out of your nose. Read about breathing exercise on the internet. I do yoga n has helped a lot.

Breath deep my friend!

MJ82 · « **Reply #19 on:** August 22, 2015, 03:12:14 am »

Thanks MontanaBlue,

I am only taking Harvoni (thankfully no Ribavirin this time round), but I will have the lung function test as soon as I can make an appointment. I'll post back if there's anything abnormal, but I'm quite sure it will be fine. The shortness of breath, though uncomfortable when it comes, is not every day, and usually doesn't last more than about 40 minutes.

CHepCFree · « **Reply #20 on:** August 29, 2015, 07:01:39 pm »

Please do not disregard any side effects and please report your sides directly to the FDA. I am post TX six months and have damage to my lungs based on CT scan after experiencing shortness of breath, tinnitus (which started on day 10 of Harvoni), chronic fatigue, a constant headache, none of which was present prior to Harvoni. Ensure that you check with your doctors as you go along and do not assume anything. There have been many more side effects than initially reported to include a number of deaths, cardiac arrest, respiratory failure, all documented on an FDA report I secured under a FOIA request. Do not take these side effects lightly. I know you all want to be cured.....please be proactive and do not assume it is just a side and will go away. In the FDA's own words in a letter I received from them..."all approved drugs pose risks in addition to providing benefits...... we realize that when an approved new drug becomes widely used....the incidence and/or type of adverse drug experiences sometimes differ from those observed in clinical trials." The sad thing is, they do not have to report out until 16 months after release. Best wishes to all.

mnsusieq · « **Reply #21 on:** August 29, 2015, 08:46:21 pm »

I too have had shortness of breath starting on 4th day on Harvoni, weakness and dizziness . BP has elevated also. It does come down after deep breathing and rest, I also have MS so it's been
hard to figure out what causes what, Rest is my best friend .
My best to all,

mrcat211 · « **Reply #22 on:** September 01, 2015, 03:49:34 am »

gnatcatcher
Fibroscan put me also at F4 cirrhosis Grade A when fibrosure had me at F2-F3. Fibroscan median score was 17.4. Endoscopy revealed that I also have varices. About to start Harvoni and concerned it won't be enough to cure this- did you also take Riba?
Thanks

gnatcatcher · « **Reply #23 on:** September 01, 2015, 06:57:08 am »

mrcat211, no, I'm not taking Riba -- just the standard 12-week course of Harvoni specified for anyone treatment-naive with or without cirrhosis. On September 14 or 15 I'll take the labs my PCP has me take every six months -- he includes a liver panel and a VL, so I'll get to see if the four-week results held up.

mrcat211 · « **Reply #24 on:** September 02, 2015, 12:36:06 am »

Hello all,
Started Harvoni today for 12 weeks! Hurray!!! A huge step forward and a few steps back all in the same day.
Received results from my endoscopy and colonoscopy of last week and I have large gastric varices now also.
Im guess Im just surprised that Im surprised- and sad.
I just recently found out that I am F4 Cirrhosis when just a couple of months ago I was F2-3.
Not trying to be a complainer here at all. I am very grateful and fount like hell to get the Harvoni approved, even had to get a lawyer involved. Its been a long road to get to this point and now that I'm here, I feel defeated before I have even really started.
Dr. said that if treatment doesn't work, then it's on to transplant but in the meantime we have to deal with these varices.
I'm so scared.
Has anyone else had to deal with gastric varices?

gnatcatcher · « **Reply #25 on:** September 02, 2015, 08:00:23 am »

mrcat211, congratulations on getting Harvoni approved.
Although I have not been tested for varices, moderator Lynn K. has had them and been treated for them. See her post here: http://forums.hepmag.com/index.php?topic=3061.msg25405#msg25405 Note that she has gone on to be cured of Hep C.
In that post, Lynn mentions that after one is cured, some liver healing could occur. More recently, the editors posted the results of a study that show as much as a 30% improvement: http://forums.hepmag.com/index.php?topic=3221.msg27116#msg27116
Every good wish,
Gnatty

HazelAustralia · « **Reply #26 on:** September 06, 2015, 05:13:11 am »

Hi all,

I was wondering about what you wrote above, CHepCFree:

Quote

The sad thing is, they do not have to report out until 16 months after release.

Does this mean that 16 months after international release we will begin to see findings from the clinical trials and beyond, from the drug companies and possibly from others too? When will this be for Harvoni, and for Vpac, do you know?

best wishes to all,
H.

MJ82 · « **Reply #27 on:** September 07, 2015, 01:46:12 pm »

In case you haven't seen my update in the other thread, here it is: http://forums.hepmag.com/index.php?topic=3280.0

I saw the pulmonologist and was found to have diminished lung function and early asthma. The shortness of breath continues, and I am certain is it the Harvoni. I've never in my life had shortness of breath or breathing problems, and the doctor also did a test to check for allergies (and predisposition) and it was normal.

I am now on an inhaler for the next couple of weeks and then I'll have a follow up with the pulmonologist, but if this continues (which it has even with the inhaler), I am really not sure what to do. I recall another member on the forum here who had diminished lung function (and other issues) and discontinued treatment - not something I wish to do of course, but I don't want to saddle myself with long-term lung damage and asthma, unless others have experienced a clearing up of similar problems post-treatment.

I am concerned and bummed out and don't know what to do. I'm consulting my treating doctor

KimInTheForest · « **Reply #28 on:** September 07, 2015, 02:08:00 pm »

Hi MJ. Sorry to hear about your diminished lung function and early asthma symptoms while on Harvoni. I certainly had problems like that on my Harvoni+Ribavirin, which I finished in July. In my case, I assumed (and was told) it was due to the ribavirin, which causes a dry cough plus anemia, both of which can result in shortness of breath. But really, what it felt like to me was asthma (constriction of airways and wheeziness), which I had no prior history of. Other people on these forums have described similar experiences while on Harvoni, so who knows?

I can say that that those problems have now almost entirely disappeared for me, and I am 6 weeks post-tx today. Doesn't mean everyone will have the same experience, though.

Here is a link to Dr. Andrew Weil's advice about asthma:
http://www.drweil.com/drw/u/ART00306/asthma.html

I think it would apply, whatever the cause of the asthma - even if it is medication-induced. He advises eating turmeric and ginger daily because of their anti-inflammatory properties. He says asthma "is now being considered an inflammatory disorder." (Of course, a drug can be the trigger for that inflammation.)

Good luck, and keep us posted on your news.

best,
kim

MJ82 · « **Reply #29 on:** September 07, 2015, 02:17:03 pm »

Thanks for your reply Kim, I appreciate it. Your experience of these problems resolving is reassuring, and I will look into the advice you shared. I will also keep you all posted. Best wishes

CHepCFree · « **Reply #30 on:** September 08, 2015, 07:47:34 pm »

HazelAustralia, You asked when the FDA is to report out on additional information on Harvoni. I was told by them that they have 16 months from the release of the drug and that was in October 2014. They are not required to report out all information only what THEY consider to be important. There is a lawsuit currently in place by two advocacy groups as the FDA will not release trial results or any list of what sides are being reported.

As for lung function, I am six months post TX and have loss of lung function. I have a constant headache, chronic fatigue, vertigo, digestive issues and neuropathy, none of which I had pre-Harvoni. Being six months out, I am beginning to think I am permanently affected by this drug. There are others who are suffering from severe joint and muscle pain If you are healthy at this point, you may want to consider waiting on the drug. Wish I had.

slats1056 · « **Reply #31 on:** September 08, 2015, 11:38:04 pm »

Hey There CHepCFree, Nice to hear from You , wish things were improving quicker for You. It's nice to see both sides of the coin as far as individual experience and the pros & cons. Been reading up on the FDA Report and it is a real eye opener, not to be the Boogeyman or the like, but it is not for the faint of heart! I hope that everyone is reporting the sides to both Gilead and the FDA for the sake of all. Don't get Me wrong, we are living in a new era of medicine that does wondrous things but can also do grievous damage to some. Like someone said it is only 2-3 percent so what,Well if You are that 2-3 percent it makes all the difference in the world. It is a breath of fresh air to here from a no bull shit source that would like all to hear all the info, not just the good stuff. Take care of Yourself & keep posting.

CHepCFree · « **Reply #32 on:** September 09, 2015, 02:08:40 am »

Thanks Slats! (Email removed)

HazelAustralia · « **Reply #33 on:** September 19, 2015, 07:02:38 am »

Thanks for your response and the info CHepCfree. I'm so sorry to hear about your ongoing symptoms.

tblount · « **Reply #34 on:** September 19, 2015, 07:07:52 pm »

I hope you get better.

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Author Topic: A little short of breath on Harvoni, day 5 (Read 25313 times)