Author Topic: side effects are a surprise (Read 27132 times)

smaugslugger · « **on:** April 29, 2015, 11:46:43 am »

Hi. I have been on sovaldi/ribo for a couple of months. Have 1 more month to go. My doctor told me NO SIDE EFFECTS. Not true. I wake up nauseous every morning and it takes hours to get straight. My strength is really compromised too---I used to work out intensely. Now, I take leisurely slow bike rides.
A couple of friends who are also on the treatment are being prescribed adderall to give them some energy. I went to a doctor, and it was no problem. He just prescribed it without testing me for ADD. I have mixed feelings about using a stimulant. The treatment, with it's side effects are making me depressed, and I feel bad about being so unproductive. The stimulant gives a mild boost. But at the end of the day, it's still just speed. Surprisingly, the docs have no issues with it.
Anyway, I was so excited to get on the treatment and expected to start feeling better than my usual tired self. I didn't expect to feel sick and now I'm hearing stories of side effects sticking around for a long time after treatment. I guess that I'm surprised that the doc minimized the potential side effects. Any thoughts?

saydey · « **Reply #1 on:** April 29, 2015, 02:02:53 pm »

Hi~I had the same expectations, and disapppointments! Started Harvoni & Ribavirin 4/11. First few days, not so bad except for too many potty visits with loose, well, you know. Then, sides kicked in with being cold all the time, fatigue, sadness, no appetite , serious hair loss, etc. Turns out I have severe anemia from the RIBAVIRIN . I was on 1000mg a day, reduced yesterday to 600 so we will see. I'm thinking the riba causes most side effects and notice here that lots are on Harvoni only. I'm new to the forum and posting, please forgive my lack of knowledge or etiquette. I'm learning, forgetting, learning, forgetting; ) Hang in there, imagine being hepc free! BTW where are you? I wish my doc was so generous with drugs to uplift your energy and mind! Always, best wishes for your recovery!

ponygirl · « **Reply #2 on:** April 30, 2015, 04:04:09 am »

I am so sorry that your physician said there are no side effects from Ribavirin. There is a list of side effects 3 pages long on Ribavirin. The primary side effect is anemia. There are warnings about how these symptoms need to be monitored by the physician. There is also a warning that it causes severe depression with suicidal ideation. I took it one time before and they had to give me Procrit injections to make my bone marrow create more red blood cells because the anemia was so bad.
I have a friend who had three IV injections last month to resolve her anemia. Make your physician do CBCs (to check hemoglobin and hematocrit). Mine does them every two weeks. My doc had to take me off the Ribavirin today and instead of 12 weeks of Harvoni and Ribavirin I have to do 24 weeks of Harvoni.

According to the FDA:
"The most common adverse event associated with ribavirin is anemia, which may be severe. Patients should be advised that laboratory evaluations are required prior to starting ribavirin therapy and periodically thereafter. It is advised that patients be well hydrated, especially during the initial stages of treatment. Patients who develop dizziness, confusion, somnolence, and fatigue should be cautioned to avoid driving or operating machinery". Fatal and nonfatal myocardial infarctions have been reported in patients with anemia caused by ribavirin".

The FDA also recommends: "Patients should be informed regarding the potential benefits and risks attendant to the use of RIBAVIRIN".

Go look it up on Mayo Clinic site also. www.mayoclinic.org/.../ribavirin.../side-effects

The ADHD meds may wake you up but it has not fixed the underlying cause.

I want to slap your doctor (But that is probably just the also Well Known side effect; Riba-Rage). I would be more understanding if he/she was talking about just the Harvoni "not having any side effects" (but that is also untrue- they are just 1/16 as bad as those caused by previous HVC medications).

I hope this helps you. It is not you. Its the drugs.

ponygirl · « **Reply #3 on:** April 30, 2015, 04:23:54 am »

@sayday. My gastroenterologist just stopped my Ribavirin completely after dropping me from 1000 to 600 two weeks ago to get the side effects under control. She said there is no research that indicates that taking a lower dose of Ribavirin helps at all. So she is making me do the 24 weeks of solo Harvoni. (if the insurance company agrees).

If your doc has any current studies that show that the lower doses of Ribavirin help, tell me where to find them so I can have my doc read the information. I am almost human again (with some anemia)at 600 mgs so I would happily take it at that dose for 12 or 24 weeks if it helps clear the virus.

Does anyone else reading this have info on any research that would indicate that we can take the Ribavirin at a lower dose and increases the Harvoni efficacy?

.

smaugslugger · « **Reply #4 on:** May 02, 2015, 01:30:00 pm »

Thanks for the support Ponygirl. I talked with a nurse yesterday and am seeing the doc next week. Basically, they said that my side effects are normal and keep popping the pills (like I would stop because I don't like the side effects). The nausea really never subsides, so I do very little. I hang out at home on the computer and watch spring pass by. That part is particularly hard because I live in a cold climate and hate the 6 months of snow and frigid temperatures. I like to take advantage of the sun when it appears.
I have a therapist that encourages me to stay balanced and socialize as much as possible. And I do, but man this is depressing!
The nurse told me that the ribo/Sovaldi combo is the only thing I can take for my genotype 2, so on I go. I'd love to hear about anyone's experience with these new treatments. I have 3 friends that have recently completed their treatments. Only 1 really struggled with side affects. 1 of them is actually drinking alcohol on the treatment---allot of alcohol! Anyway, I just felt like chatting with anyone. Responses are welcome.

Lee · « **Reply #5 on:** May 02, 2015, 07:25:31 pm »

I am wondering why you, and some others on this forum, are being given the Ribavirin in addition to the Harvoni while a lot of others are on Harvoni only. I have been on Harvoni alone for 12 days now, and I have absolutely no side effects whatsoever. From what I am reading, many people are beating this thing on Harvoni only. Is there some criteria for those who get only Harvoni and those who need Harvoni with Ribavirin? Just wondering.

Good luck and hope you feel better!

Lynn K · « **Reply #6 on:** May 02, 2015, 10:03:08 pm »

Hi Lee

In my case I was a 3 time null responder to interferon based treatments. I treated last year with Sovaldi/ Olysio and was not detected at week 4 on treatment and at end of treatment after 12 weeks but was found to have relapsed at week 12 post treatment.

I was also diagnosed with cirrhosis in 01/2008 and developed esophageal varicies that required banding in 2012 due to portal hypertension as a result of my cirrhosis.

I am treating with Harvoni for 24 weeks plus we added Ribavirin later on so I will be taking Ribavirin for 15 weeks.

My last day on treatment is Monday May.

So you can probably tell at least in my case why I am taking the Riba along with Harvoni.

Also for some patients Harvoni and riba for 12 weeks is deemed to be just as effective as Harvoni alone for 24 weeks so it is offered as an alternative.

Welcome to the forum and good luck on treatment

MEG · « **Reply #7 on:** May 02, 2015, 10:58:29 pm »

Hi Lee and mmolinde...

First, I'm sorry mmolinde, that you are struggling with your side effects and that your doctor did not warn you of the side-effects. Ribavirin can wreak havoc for some people...

Lee, because mmolinde is Geno 2, Sofosbuvir/Ribavirin are recommended. 94% achieved SVR...

This website is the official site for HCV treatment guidelines. It's a good one to bookmark as things are evolving as they get "real world" data...

Across all 3 trials, 201 of the 214 (94%) patients with HCV genotype 2 achieved SVR with sofosbuvir plus RBV.

http://www.hcvguidelines.org/full-report/initial-treatment-hcv-infection

Mmolinde, I want to echo the advice and anger with your doctor. Surely, you should be getting regular blood tests to make sure your hematocrit doesn't get too low(for most people it does and then they adjust the dosage).

One other danger of Adderall is that it may mask the fatigue that one experiences when the hematocrit has gone way down---needing intervention like Epo.

Any chance you can see another doctor to manage your care?

Best and please do keep us posted.

MEG · « **Reply #8 on:** May 02, 2015, 10:59:23 pm »

@ponygirl.

I'm happy to hear you are off Riba! Harvoni for longer sounds so much better.

smaugslugger · « **Reply #9 on:** May 03, 2015, 01:25:05 pm »

Hi all. Thank you for all the feedback. I knew next to nothing about all of this until I came here.
The doc told me that sovaldi/ribo is the only option for my genotype, but I have a 97% chance of being cured. I think this is because it's geno 2, and although I've had hep c for 25 years, it's still at a stage 1-2, no chirrosis, etc. That said, I have struggled for years with big time sleep and energy problems. I never really knew if it was because of the hep c, and I wasn't interested in learning much about the disease because I felt powerless to do anything about it. I just felt flawed---really flawed. These new treatments are giving us allot of hope and literally nothing would make me happier than to have energy and motivation again.
The doc that misinformed me has moved out of state. A nurse practitioner is and has been in charge of all the hep c treatments. My clinic is cutting edge for my state, but also extremely busy. My doc told me that he was part of the team that developed sovaldi. He was very proud and thus exagerratted the "no side effect" part.
As for adderall, I'm not fond of the fake energy feeling, so I've discontinued it. My energy is always better toward late afternoon/evenings, so that's when I go for a bike ride, socialization, etc. Taking the meds with allot of food cuts the nasea to some extent. Speaking of allot of food, I feel like I'm gaining weight. Anyone else? At the end of the day, my food intake is probably about the same as it's always been, but I'm a fan of intense exercise like running, boot camp classes, etc. and that's just not going to happen right now.
Again, I'm really grateful to have and give support.

MEG · « **Reply #10 on:** May 03, 2015, 08:59:26 pm »

Hi M

Well, I feel better after reading your post. But you still need your bloodwork checked. Your CBC which will, among other things, show if the Riba is making you anemic..sometimes we need to be the squeaky wheel....don't ever be ashamed to stand up for yourself. There are other folk here who have had to tell their doctors to order labs....

Re: gaining weight. Indeed, some do. I did. There's a thread here about it. But not all do.

Just take a big breath, get your hematocrit checked(!) and all shall be well. We're here for you....
Meg.

ponygirl · « **Reply #11 on:** May 04, 2015, 07:38:35 am »

Well. The side effects did not go away like Poof when they stopped the Ribavirin. I was having confusion, depression, crying, so they lowered my dose but not in time for little Miss Anal Retentive to avoid losing an important a document. So I am now being investigated for gross negligence by my agency. I can only hope my medical provider has my back.

StaciH · « **Reply #12 on:** May 08, 2015, 10:43:26 am »

Was the Adderall prescribed by the same Dr that's prescribing the hep c meds? If not was the prescribing Dr of Adderall aware that you were on the hep c meds? Very curious. I'm currently on Harvoni, week 3 to be exact & my fatigue is worse now than before. I'd love to have a little pick me up myself!

smaugslugger · « **Reply #13 on:** May 08, 2015, 11:56:40 am »

The adderall was prescribed by a psychiatrist and he is aware that I'm on hep c meds. The hep c doc is also aware that I was prescribed adderall. I am on sovaldi/riba and there is no interaction. I took amphetamines 25 years ago for weight loss and had hell to pay when I discontinued them, so the idea made me nervous. I stopped taking them. But, I understand how you feel. My greatest challenge with the treatment is the extra fatigue. Specifically, the guilt I feel about not being as "productive" as I'd like.

sapphire101 · « **Reply #14 on:** May 08, 2015, 11:04:17 pm »

@ponygirl
Rewind please to the part about you being investigated for gross negligence by your agency for losing an important document- what!

Please get your health back and move on from this toxic work place. The people you surround yourself with are just as important as the food you put in your body and clean air and exercise.
You deserve so much better.

cure4me · « **Reply #15 on:** May 10, 2015, 06:28:20 pm »

Quote from: Lee on May 02, 2015, 07:25:31 pm

I am wondering why you, and some others on this forum, are being given the Ribavirin in addition to the Harvoni while a lot of others are on Harvoni only. I have been on Harvoni alone for 12 days now, and I have absolutely no side effects whatsoever. From what I am reading, many people are beating this thing on Harvoni only. Is there some criteria for those who get only Harvoni and those who need Harvoni with Ribavirin? Just wondering.

Good luck and hope you feel better!

I am wondering as well why you are being given Ribavirin. I am on Harvoni as well and doing very well after 4 weeks, not detected. The only side effect I have is not being able to sleep sometimes but it isn't bad just awake.

Lynn K · « **Reply #16 on:** May 10, 2015, 09:24:28 pm »

Hi cure

Did you read my answer to Lee about why I am taking 24 weeks of Harvoni and 15 weeks of Ribavirin? Just finished on 4 May 2015

Short version this was my 5th treatment (interferon null responder and Sovaldi/ Olysio relapse) I have had liver cirrhosis for 7 years so I am among the most difficult to treat

Hope that answers your question

saydey · « **Reply #17 on:** May 11, 2015, 01:57:18 am »

@ponygirl, thank you for that info! Doc dropped riba dosage to 600 b/c of severe anemia [a score of 9? Or .9, not sure] . Last week dose up to 800, and I assume she'll increase it back to 1000 if anemia improves. Going in for 4 week lab results this week, fingers crossed for good results!

It surprises me that doc has given no diet suggestions. Seems like what we consume has a primary effect on any health issue including anemia. My daughter suggests cooking with cast iron (she's had several severe bouts with anemia. ) I'm still confused about protein, do we need more, or less? I don't eat animals but get protein from yogurt, nuts and nut milks, cheese, vegetables.

Thank you all for listening and sharing, it helps so much!

cure4me · « **Reply #18 on:** May 11, 2015, 08:52:08 pm »

You know I sent a note to my nurse that handles the Harvoni because the Doctor had told me I was undetected at this point, 30 days, 60 to go. I asked her about scar tissue and does everyone make it to UD after the 1st 30 days. She said the virus hides in scar tissue because the Doctor had mentioned the scar tissue, I think that's why there are false positives. Basically it you must take the entire 90 days first. She also said no blood tests after the first round, until I take the last pill at the end of June. Just sayin..

ponygirl · « **Reply #19 on:** May 12, 2015, 01:46:21 am »

About protein. We need our normal amount of protein but we need more foods that contain iron to address anemia. I eat animal protein but not red meat (which contains the most iron and it is easier for the body to use the iron from red meat than from plants, according to my gastro). I broke my 10 yr red meat rule when I got anemic and bought grass fed/pasture raised/no hormone black angus. Pricey but less stress on by body and conscience.

There are multiple vegetables that are iron rich, so use those, but remember you may need to eat more of the vegetable for your body to get the same iron that is in red meat. Anything in the "greens" family (beet, collard, turnip greens, spinach) and sweet potatoes.

But the anemia is not due to us not eating the right foods, its due to the Ribavirin, which blocks the body's. ability to produce red blood cells. Chemo does the same thing. That is why the docs can use Procrit or a couple of other drugs that force the bone marrow to produce the red blood cells when the anemia is a medication issue. The first time I was on Ribavirin I had Procrit injections to the tune of 1k a shot every other week for three months.

ponygirl · « **Reply #20 on:** May 12, 2015, 01:58:30 am »

Cure4me. Ribavirin and Harvoni is recommended in the studies for previous non-responders to Hep C treatment who have fibrosis or cirrhosis. For us the initial recommendations were 12 weeks Ribavirin and Harvoni OR 24 weeks Harvoni. For some of us our providers are trying to go the extra mile to ensure that we have the best chance of clearing the virus by doing 24 weeks of the combo.

I am very happy for those that have not done treatments before and have no/minimal liver damage because the odds of clearing are very high with Harvoni alone. Others. like me and another poster, well we are hoping that the odds be ever in our favor because our odds of clearing are less than yours.

ponygirl · « **Reply #21 on:** May 12, 2015, 02:02:07 am »

Saydey. 9 is terribly low. Talk to your doc about Procrit (it hurts so if he orders it tell him you want the Buffered Procrit-that hurts less).

Lynn K · « **Reply #22 on:** May 12, 2015, 02:09:25 am »

I got down to 9.3 my doctors preference was to dose reduce the ribavirin so I went from 1200 mg to 1000 mg and stabilized at 10.0 on the HGB

ponygirl · « **Reply #23 on:** May 12, 2015, 08:31:08 am »

Lynn, My fingers are crossed for a good result. Glad you're done.

I could not function with a drop to 10, could not lift my arms or walk up a flight of stairs. So they gave me Procrit last time to keep me at 1000. This time they did not offer the Procrit and could not get me back up to 1000 w/o the depression with suicidal ideation and had a bad response to SSRI intervention. This time I never got below 11 so I did not need the Procrit. And they took me off the Riba on 4/30...no more psych symptoms BUT I am dealing with the aftermath, on alternative assignment at work and under investigation because of concerns that I went to work possibly impaired by the Riba, which is untrue because I took off work as soon as the psych symptoms started...but I work for the State and they are highly reactive in my Department. Since they recently fired a person who had MS, who had accommodations, I am not sure I will make it to the end of the month, when I qualify for my retirement. Scary stuff plus the treatment. Wish me luck...on TX and with my job.

smaugslugger · « **Reply #24 on:** May 12, 2015, 09:15:33 am »

Kuddos to all that have been able to continue working during treatment. I would not have made it through work---too much fatigue and nausea. I take Zofran like crazy and just found out that it's constipating. That explains allot! Any suggestions for other anti nausea meds?
Last Friday, I received an email from my doc saying that my viral load was still detectable at 8 weeks and that it shouldn't be. I freaked out all weekend, thinking I'd screwed up my treatment by missing a couple of doses. First thing Monday morning, I called the clinic and after looking at my results, the nurse said that the doc had made a mistake----I am undetectable after all. This is the 2nd time I have gotten some really upsetting news from this doc on a Fri afternoon and had to stress about it all weekend. Last time she said that I had chirrosis. I don't. Just venting----I know that they are super busy, but for God sake is it that hard to read lab results?
On another note, I'm wondering why I hear so little about Sovaldi in this forum. Is type 2 less common than the others? Seems like most people are on Harvoni.
I'm so glad that this forum is here. I have a feeling that at this stage in the game, the medical profession is more interested in learning from me than the other way around. Still grateful to have the opportunity to slay the dragon, though.

dragonslayer · « **Reply #25 on:** May 12, 2015, 09:25:14 am »

Quote from: ponygirl on May 12, 2015, 01:46:21 am

About protein. We need our normal amount of protein but we need more foods that contain iron to address anemia. I eat animal protein but not red meat (which contains the most iron and it is easier for the body to use the iron from red meat than from plants, according to my gastro). I broke my 10 yr red meat rule when I got anemic and bought grass fed/pasture raised/no hormone black angus. Pricey but less stress on by body and conscience.

There are multiple vegetables that are iron rich, so use those, but remember you may need to eat more of the vegetable for your body to get the same iron that is in red meat. Anything in the "greens" family (beet, collard, turnip greens, spinach) and sweet potatoes.

But the anemia is not due to us not eating the right foods, its due to the Ribavirin, which blocks the body's. ability to produce red blood cells. Chemo does the same thing. That is why the docs can use Procrit or a couple of other drugs that force the bone marrow to produce the red blood cells when the anemia is a medication issue. The first time I was on Ribavirin I had Procrit injections to the tune of 1k a shot every other week for three months.

But isnt iron contraindicated for compromised livers? How do you balance the anemia with this fact?

cure4me · « **Reply #26 on:** May 12, 2015, 09:54:50 am »

Quote from: ponygirl on May 12, 2015, 01:58:30 am

Cure4me. Ribavirin and Harvoni is recommended in the studies for previous non-responders to Hep C treatment who have fibrosis or cirrhosis. For us the initial recommendations were 12 weeks Ribavirin and Harvoni OR 24 weeks Harvoni. For some of us our providers are trying to go the extra mile to ensure that we have the best chance of clearing the virus by doing 24 weeks of the combo.

I am very happy for those that have not done treatments before and have no/minimal liver damage because the odds of clearing are very high with Harvoni alone. Others. like me and another poster, well we are hoping that the odds be ever in our favor because our odds of clearing are less than yours.

That is great. So far I am doing well but I do not have cirrhosis but I was pretty close, I have had it for 25 years. I am so glad to see success here.

cure4me · « **Reply #27 on:** May 12, 2015, 10:01:07 am »

I don't know this, but what do I look for when looking at my blood tests. What is good what is bad? Thanks for anything you can tell me. This is all new to me and I am glad I can come here and see the posts.

dearprudence · « **Reply #28 on:** May 12, 2015, 11:17:40 am »

Am on viekira Pak and ribaviron - just started yesterday - there are side effects mostly to ribaviron. Will be getting blood work every week to monitor for anemia. In the meantime I take 20mg of omeprazole before breakfast to help with gastro problems. My doctor also suggested at least 3 egg whites a week to help counteract possible anemia. I also take b12 and vitamin d.
Good luck on your journey.
I am also posting on blogspot.com as I go through my 12 week treatment.

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Author Topic: side effects are a surprise (Read 27132 times)