Silly Me...

[Alexa]

Thought I'd skate through this treatment relatively unscathed. Just the somewhat reported (by Gilead) sides of headaches, joint pains (ouch!) and fatigue (and yep, had them but not terribly terrible), nights of severe insomnia, but relatively unscathed? No. Not quite.

Hadn't been testing my BP due to its being quite normal, gosh-darn-good normal, for many years but noted a little shortness of breath about six-seven weeks into treatment. Never for a moment considered Harvoni at that time, but rather the heat and humidity of Florida. Of course. What else could it be? I'd been exercising. Micromanaging my diet, as always (god, is everyone as obsessed as I am regarding what I put into my body. I worry about me). No worries. Right?

Saw my primary care provider (an amazing NP) and YIKES, my blood pressure was 155/90. Last reading (pre-treatment) was 111/72, my general norm. Okay... now what. Anxiety? check. But then, I've been treated for anxiety as long as the day is long. Nothing new there. Increased water intake? Check. But I made sure to increase my potassium rich foods which weren't so much of a change due to my micromanaging diet. I was getting ample amounts of protein.

I reluctantly checked online to see if elevated BP is a problem with Harvoni after calling my specialist to check into it and being told, No, No, No. Hypertension IS NOT a side effect/adverse reaction.

Okay.

But upon checking online and seeing Gilead's revised side effects list (October 20, 2015), I called the specialty pharmacy and am again told that Harvoni is not related to hypertension. I shared with them Gilead's new list and am told they will call my specialist and Gilead. Great.

Meanwhile, my BP is quite erratic. 90/57. Thirty minutes later 150/92. Yes, I'm fully aware of blood pressure fluctuations and know it shouldn't be monitored so frequently. After a couple of weeks, the high numbers become more dominant. I become more anxious. It's an ugly combination. I'm genuinely becoming frightened and my Harvoni prescribing doctor is refusing to see me and suggesting I see my primary care provider again. So I do. In her office, at first reading, it's 150/89 and ten minutes later, it's 178/95. This is just not my normal. She prescribes (upon my reluctance to start taking BP meds based upon my belief that once the treatment ends, the elevated BP will as well) a diuretic. But then, another concern emerges: my last sodium and chloride numbers were below normal range. So if I'm taking a med that will pull more sodium out of my body (that isn't there) can I expect a hypotensive crisis? I stop checking my blood pressure. I only have a couple more weeks. It's taken almost a year to get this freaking miracle drug, I cannot stop taking it. What if the last two pills are the ones which will destroy the last tiny bit of virus that may be hiding? I can't stop. I'm scared. My BP continues to rise, now each day, but I'm scared to stop taking the Harvoni. My miracle drug.

So I don't.

Hello ER. 

[Rubi]

I'm so sorry. I took Sovaldi/Riba so I'm not as educated about the harvoni. I do understand your delima though. I had horrible side effects with a doctor who said there were none for these meds. I did not want to stop taking the meds for the same reason. I did have a trip to the ER on a particularly bad night.

While I have no answers for you I don't want you to feel alone with your worries. I hope someone on here can help you with some answers. Until then big hugs your way.

Rubi

[Alexa]

I'm so sorry. I took Sovaldi/Riba so I'm not as educated about the harvoni. I do understand your delima though. I had horrible side effects with a doctor who said there were none for these meds. I did not want to stop taking the meds for the same reason. I did have a trip to the ER on a particularly bad night.

While I have no answers for you I don't want you to feel alone with your worries. I hope someone on here can help you with some answers. Until then big hugs your way.

Rubi

You are so sweet! Thank you. You definitely made me feel better and I know this is a rough road for all of us.

After my stay in the hospital and having multiple discussions with numerous doctors, I discovered they all have their own opinions and they often are not based on facts or at least, current facts. And what I find to be quite sad and perplexing is that so many don't even know what Harvoni is, and I have to give huge credit to one ER doctor for taking the time to educate himself and provide excellent advice. They are quite rare. The cardiologist and ID doctor were both quite ignorant regarding Harvoni.

Big hugs your way too!

Thanks again! Edit: Sorry but wanted to add from everything I've read that riba is absolutely horrid. No way around that. But the Harvoni folks were told about side effects such as fatigue and headaches and even then, the numbers were not outlandish. No one said anything about heart issues. My AMAZING ER doctor informed as to why this occurs. It ain't quantum mechanics folks.

[KimInTheForest]

Hi Alexa. You are not alone. I myself did not experience high blood pressure while on my 12 weeks of Harvoni. But others here have. Here is one thread on these forums where people are discussing that:

http://forums.hepmag.com/index.php?topic=1744.msg32776

Good luck!
kim

[marybarter]

I took Harvoni from March to September of this year.  It was, by far, the most difficult and trying time that I've survived so far in my life.  Despite the fact that my Hepatologists are "specialists", I received no support.  I was given the number of a "nurse" whom I was told to call if I had questions, etc.  She was either not available or she didn't have any answers to my questions. There were a couple of times that I almost quit but I knew I would never find anyone to treat me again if I stopped Harvoni (not to mention that my insurance would never cover treatment again).  Their answers (when I could actually reache a doctor) were "you're so lucky you were approved to take this miraculous drug".  It was lonely, scary and I'm still sick from side effects even though I finished the drug on September 7, 2015.  My 12-week followup test showed that the virus is gone but I will be tested again in two months.  I have a wonderful Primary physician and, had it not been for her emotional support, I'm quite sure that I would have stopped taking the Harvoni.  Yes, I'm very lucky I was able to take Harvoni and that it was covered by my insurance but I will never take a drug that hasn't been out for at least two years again. I'm a Patient Advocate who can successfully help many people with similar problems with the medical system but I was unable to obtain any support whatsoever.  I went through two long treatments of interferon and rib. but it wasn't nearly as psychologically difficult. Please believe in yourself and be as pro-active as you can.  If anyone tells you you're lucky to have procured Harvoni, please understand that only those who have lived your experience know how difficult it can be. If we don't finish the course, we will be never be able to obtain new treatments.  Take care.   

[moma]

Alexa my blood pressure went sky high too. I called my cardo doc and he told me to double my blood pressure meds. So that's what I did then checked bp each day and cut back or added. I have had two heart attacks in the past so I know how concerned you are. I have been on this forum since day 1 of treatment and now 9 months past. Believe me you'll never get a medical professional to say any of your symptoms are a side effect of Harvoni. BUT there are as many side effects as there are people taking this drug! I ended up with gout, I found out gout is caused by high uric acid levels. Went back and looked over previous blood test and could chart how the uric acid increased the longer I was on Harvoni. I could go on about my side effects, but everyone has a story I'm sure.
I just got a call from my gastro doc telling me I was in better health than him! What changes are seen from an ultra sound are changes because the liver is healing. And I don't have an appointment until July! So what ever I went through or have been left with because of Harvoni nothing in the world could replace the feeling of my body being healthy, functioning and rid of that foreign monster that ruled my physical and mental life for 44 years. Don't give up.
Moma

[Alexa]

Hi Alexa. You are not alone. I myself did not experience high blood pressure while on my 12 weeks of Harvoni. But others here have. Here is one thread on these forums where people are discussing that:

http://forums.hepmag.com/index.php?topic=1744.msg32776

Good luck!
kim

Thank you, Kim. It seems high blood pressure is more common than recognized or even acknowledged by Gilead. Since, last posting, I've seen my specialist and he believes due to my quite minor hypothyroidism (I only take 25 mcg (yes micrograms) 5 times a week) that the HCV was the cause of the minor hypothyroidism and now I'm experiencing hyPERthyroidism causing elevated BPs. His recommendation is that I stop taking the Levothyroxine for a month and then recheck. Since I've had hypothyroidism for about five years and managed it with the very low dosage (empty stomach, same time each day) I'm somewhat reluctant but agreed to follow his recommendation.

I asked him about the folks here having BP and other issues with Harvoni and he wondered if they, as I as he seems to believe, have other issues.

One thing that extremely concerns me and, trust me, I addressed it vehemently, was he is of the opinion that if you are undetectable at 4, 8 and 12 that you are cured. I asked about the SVR at post 12 and 24 but his response was that he has had 35 patients "cured" with undetectable at 4, 8, 12.

Groan.

[Alexa]

Alexa my blood pressure went sky high too. I called my cardo doc and he told me to double my blood pressure meds. So that's what I did then checked bp each day and cut back or added. I have had two heart attacks in the past so I know how concerned you are. I have been on this forum since day 1 of treatment and now 9 months past. Believe me you'll never get a medical professional to say any of your symptoms are a side effect of Harvoni. BUT there are as many side effects as there are people taking this drug! I ended up with gout, I found out gout is caused by high uric acid levels. Went back and looked over previous blood test and could chart how the uric acid increased the longer I was on Harvoni. I could go on about my side effects, but everyone has a story I'm sure.
I just got a call from my gastro doc telling me I was in better health than him! What changes are seen from an ultra sound are changes because the liver is healing. And I don't have an appointment until July! So what ever I went through or have been left with because of Harvoni nothing in the world could replace the feeling of my body being healthy, functioning and rid of that foreign monster that ruled my physical and mental life for 44 years. Don't give up.
Moma

oh god. it's quite scary, isn't it. After being hospitalized for three days due to extremely erratic BP and being told that it probably wasn't caused by Harvoni, I started to feel so overwhelmed. Also, had pains in my kidneys, liver, odd pains in my left side (under ribs) and strange aches in my neck and back. I had numerous tests whilst in the hospital. Did have two doctors who seemed to try to connect the problems.

The ER doctor was amazing and the only one that actually bothered to see what Harvoni was! He thought that perhaps the hypothyroidism (extremely mild) might be a factor. And when I saw my specialist, he did as well. I hate stopping my low dose of hypothyroidism meds but I have stopped.

My last Harvoni pill was December 16. One doctor (god I saw so many) told me I'd been on a very potent drug and shouldn't expect to be myself for awhile.

Your statement " Believe me you'll never get a medical professional to say any of your symptoms are a side effect of Harvoni" is so true. My specialist said it was the best treatment available (and I agree) and that the side effects were virtually none (I don't agree). I showed him the revised Gilead side effects list from Oct. 30, 2015. He wasn't aware of it.

I've not taken the two meds (one from cardiologist and one from primary care provider) due to erratic BP readings. I've never had a BP problem. And checking it, it's extreme: 90/57 and then 170/95. After the chest pains, in the ER, it went up over 200 systolic and over 100 diastolic. That's when I was admitted to the hospital. I'd really be interested in all your side effects. I think it's important. And thank you so much for taking the time to post. This is significant.

[Alexa]

I took Harvoni from March to September of this year.  It was, by far, the most difficult and trying time that I've survived so far in my life.  Despite the fact that my Hepatologists are "specialists", I received no support.  I was given the number of a "nurse" whom I was told to call if I had questions, etc.  She was either not available or she didn't have any answers to my questions. There were a couple of times that I almost quit but I knew I would never find anyone to treat me again if I stopped Harvoni (not to mention that my insurance would never cover treatment again).  Their answers (when I could actually reache a doctor) were "you're so lucky you were approved to take this miraculous drug".  It was lonely, scary and I'm still sick from side effects even though I finished the drug on September 7, 2015.  My 12-week followup test showed that the virus is gone but I will be tested again in two months.  I have a wonderful Primary physician and, had it not been for her emotional support, I'm quite sure that I would have stopped taking the Harvoni.  Yes, I'm very lucky I was able to take Harvoni and that it was covered by my insurance but I will never take a drug that hasn't been out for at least two years again. I'm a Patient Advocate who can successfully help many people with similar problems with the medical system but I was unable to obtain any support whatsoever.  I went through two long treatments of interferon and rib. but it wasn't nearly as psychologically difficult. Please believe in yourself and be as pro-active as you can.  If anyone tells you you're lucky to have procured Harvoni, please understand that only those who have lived your experience know how difficult it can be. If we don't finish the course, we will be never be able to obtain new treatments.  Take care.   

Oh god, bless your heart. I experienced the same. My specialist provided very little support. There were no follow up visits. Only blood tests at 4, 8, and 12. But I was told if I had any concerns, to contact his assistant (he was indeed great). But once the BP went insane, and I scheduled an appointment with him, he cancelled it and told the receptionist that I should see my primary care provider, that Harvoni DID NOT cause BP issues. I mentioned the October 20 PDF from Gilead but to no avail.

Once I saw him at my 12 week (EOT) exam, I showed him what Gilead had finally admitted about the BP issues. I even told him about all the folks here having side effects. His response was that probably other issues were happening unrelated to Harvoni. Yes, my very low hypothyroidism may be causing my erratic BP. I don't know. But I don't want to have a hypotensive crisis as well. We truly are guinea pigs. I hope you are doing better. Thank you for sharing your experiences and please take care. 

[jakas]

this is an old thread but you can see how many ppl have BP highs and that includes me
http://forums.hepmag.com/index.php?topic=1744.0

[Alexa]

this is an old thread but you can see how many ppl have BP highs and that includes me
http://forums.hepmag.com/index.php?topic=1744.0

Thanks so much for responding!

After 15 days (post treatment) my BP is still not normal. Not crazy (hypertensive crisis high) as when I was admitted to the hospital but still not normal.

This doesn't seem so odd. My specialist flat out said Harvoni didn't cause it. But then he doesn't believe 12SVR is needed as I've been undetectable at 4, 8 and 12. He believes I'm cured NOW.

I'm not bashing him. He's a great doctor but sometimes I think he's overwhelmed with all the patients he has and the severity of their conditions.

Hope your BP is better now!

Alexa

[jakas]

yes its better but wont be normal till I am taking Harvoni, as its been 22 days and all these 22 days its been higher than my normal range of 135/75. Its 155/90 now from the high of 190/98. Yes according to my doc who is an infectious disease specialist the ONLY side effects are fatigue and headache

[Alexa]

yes its better but wont be normal till I am taking Harvoni, as its been 22 days and all these 22 days its been higher than my normal range of 135/75. Its 155/90 now from the high of 190/98. Yes according to my doc who is an infectious disease specialist the ONLY side effects are fatigue and headache

Heh. Yes after seeing two gastroenterologists (one I'd had several procedures with, the other didn't even know what Fibrosure or Fibroscans were, lol) that couldn't be bothered with the time involved with a HCV patient, my doc is an ID as well.

After having very high BP readings for several days, I called his office and was referred to my primary (who I'd just seen and had noted the abnormal BP). His reasoning? Harvoni doesn't cause hypertension. Only headaches and fatigue. On my last visit with him, I made a copy of the revised side effects/adverse reactions (October 20, 2015). He said he'd read it. He and his assistant work very hard (they're treating HIV folks as well) and I honestly believe he's a good doctor.

Starting treatment was frightening but it was one of the happiest days of my life when that Fedex truck pulled up that first time.

Ending treatment is even more frightening. It's such a new drug, so many issues the "experts" don't know about and that nagging feeling that something worse is waiting around the corner.

Maybe I'm being outlandish and unreasonable due to the recent hospitalization and after reading so many of my test results and seeing so many things that weren't there prior Harvoni. I don't know. And the one test my oncologist/hematologist (no don't have cancer but my AMAZING primary care doc -- at the time, he doesn't practice now due to serious health issues    -- wanted to find out why certain proteins were always elevated and the onco/hematologist was the best in the area) ordered is still elevated post treatment. Yes, been told when you're going through a hypertensive crisis, don't trust the numbers, but c'mon. Lesions in both kidneys and liver? Now? Not there before treatment. Other tests abnormal but were normal before.

Sorry for such a long post.

   

[jakas]

yep I get your point. I just hope your problems with the health issues get sorted.
I also feel that the drugs are so new there are not enough people to compare the risks.
Now that the generic stuff is out we will know much more in 2016