Is it just me

[almostfinished]

First time on here.
Only have two more weeks to finish my Epclusa 12 week treatment.
Have had side effects from day 1 and not a return call from the Dr., the pharmacist however has been very helpful.I have joint pain, depression,severe diarrhea and have lost over 20 lb.I refused to quit treatment, thinking it would get better but it never did. Read many comments of no side effect from other users and starting to wonder if it is just me. The pharmacist said different people have different side effects and that mine would go away. Also only had blood tests at four weeks and never told viral load or anything as I haven;t seen the Dr. Is anybody else this ill??
I will add I have had Hep.C Genotype A for 40 yrs. with high Alt and Ast, fibroscan at 8 and fibrosis.

[Lynn K]

Hi almost finished and welcome

Sorry to hear you are having a rough time with treatment sounds like you are having had a tougher time than most unfortunately. Hang in there we are all rooting for you!

Sorry you have not had the best experience with your doctor. As far as testing they may not have tested you for viral load as basically you very likely are at not detected but on treatment testing means little. Then only test that matters, the one that means you are cured is the one taken 12 weeks after treatment ended. If you are not detected with your HCV RNA test at that point you are cured.

Most of us have either copies or access our test results. My doctor uses MyChart a website where I can see my results and test history anytime going back years. If your doctor does not have this or similar service I woul go to the office and request copies. They are your tests and records you have every right to see your files and tests.

As far as your Fibroscan score of 8 check out this image

https://uptodategastro.files.wordpress.com/2014/12/fibroscan-results.jpg

Your score puts you at between F1 and F2. After cure people with mild to no liver damage (below F2) should be able to return to living a normal life as though they were never infected with hep c. Most with minimal fibrosis will likely have improvement in these numbers. Also Fibroscan is most accurate at either F1 or F4 and not as reliable at mid levels. Simple things like eating before the test or being dehydrated as well as operator variation can effect your results. It is best to test on an empty stomach as having eaten can increase your score.

If you still have your copy of prescribing information sheet that comes with your prescription it lists the sides experienced in clinical trials.

Here is a link to a pdf of the prescribing information sheet

https://www.gilead.com/~/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf?la=en

On page 8 you will read:

“The proportion of subjects who permanently discontinued treatment due to adverse events was 0.2% for subjects who received EPCLUSA for 12 weeks.  The most common adverse reactions (adverse events assessed as causally related by the investigator and at least 10%) were headache and fatigue in subjects treated with EPCLUSA for 12 weeks.  Adverse reactions, all grades, observed in greater than or equal to 5% of subjects receiving 12 weeks of treatment with EPCLUSA in ASTRAL-1 include headache (22%), fatigue (15%), nausea (9%), asthenia (5%), and insomnia (5%).”

There are other sides others have experienced as well some here experienced some joint pain as well just not to the levels you have experienced.

I hope once you finish treatment your symptoms quickly resolve and you can go on to enjoy your hep c free life.

Good luck with the rest of your treatment and recovery.

[almostfinished]

Lynn.
Thank You so much for getting back to me, I will defiantly ask for my numbers at my follow up appt. in April. I have no copies of anything. I am over 65 yrs. old and took my daughter with me when I got the first bottle of pills. The Doctor told both of us, I could expect zero side effects, so when I read the attached brochure I thought nothing of it. I was asked to stop all stomach pills for the 12 weeks, after three weeks of stomach acid burning my mouth and tongue the pharmacist said all pills should not have been stopped and told me to take one with the Epclusa. The one pill made a huge difference. There is only one liver specialist where I live so I do not even have the option of changing Doctors. Again thanks so much for the information.

[KimInTheForest]

Hang in there almostfinished! Sounds like you're going through hell, but you really are almost finished! Then you can rebuild your health and enjoy a HepC-free life.

Be sure to stay well hydrated - especially with the diarrhea, which may be dehydrating you. Dehydration worsens almost any side effect. You may also want to scale back to some sort of BRAT diet to help with the gut/diarrhea issues: Bananas, Rice, Applesauce, Toast. Basically a bland 'white' (in color) diet with minimal fiber/roughage. I had to do this at one point during my 12-week treatment because of diarrhea, and it worked.

good luck!
kim

[almostfinished]

Hi Kim...thanks for getting back, I am trying to eat totally bland food because of the excess acid in my stomach,,,pita and some of the things you mentioned like bananas.I am so close to being finished and when I came on here two nights ago I was going to stop treatment I  felt so sick.
I have severe allergy's to many drugs and carry epi pens at all times, I  truly believe I have developed a mild allergy to this drug. As a senior who lives alone I make sure I try to stay out of bed most of the time, so I don;t just lie here and feel sick, but lately I get out of breath very easily and my family Dr. has scheduled some breathing tests for me.
There are only 15 pills left.

[KimInTheForest]

Make sure you get a Complete Blood Count blood test. It would be useful to know what your Red Blood Cell and Hemoglobin numbers are, since you have become out of breath on Epclusa.

And yes, be sure your doctor's office give you print-outs of all your lab result. Even if the numbers don't mean much to you now, you will want them for future reference. And people here can help you interpret anything on them you don't understand. Doctors can too, of course, if they take them time.

kim

[Lynn K]

Yeah that was the hardest part of treatment for me I quit taking Prilosec for my 24 weeks of treatment just took occasional Tums no closer than 4 hours before or after my Harvoni pill.

Just to add I am 59. I was 57 when I finished treatment but I realize there is lot of difference between 57 and 65

[almostfinished]

Hi Lynn
Dr. sent me some pills for the headache and I took one and have been in bed all day. They are called Statex and make me nauseous.
I was on aciphex 20 mg. three times a day and stopped it cold when I was told to by the hepatologist. Now just the one with the Epclusa in the morning.
I live in Ontario and know many people infected like me through transfusion, they are refusing the drug and waiting to see how it works for me so I am trying really hard not to complain to anyone, that is why I came out here but still feel like I am whining.
I was fairly healthy, working part time, and very active now I am wondering if I will ever feel good again. If I stop it with the 15 pills left will it still work as well?

[Lynn K]

It might still work or it might not.

It could cause future resistance if you fail this treatment and then you will be waiting for a new medicine maybe.

I did three rounds of interferon based tx back in the day, one try with Sovaldi and Olysio when they were new but I relapsed. Then I treated again Harvoni when it was approved the month prior

I know this is tough and sadly some are just more sensitive to meds than others are.

Hang in there you can do this.

[Ella]

Ah Almostfinished, don't give up! I'm with you!

I'm on Epclusa, and I've had lots of side effects, too. At various times: nausea, fatigue, weakness, muscle and joint pain, headaches, diarrhea, other digestive upsets, a stoned feeling, and even feeling like I have a mild to moderate sunburn at night after I take my pill (which my doctor's office has never heard of with this drug).

My pharmacist and doc's office let me take Pepto Pismol for the diarrhea and I ate Activia yogurt with probiotics. Not sure if they'll help you, but they helped me a lot.

The worst for me was the nausea, but I started drinking a cup of Pedialyte a day for electrolytes, and that really helped. (I noticed on my blood work that a couple of electrolytes were scraping the bottom of the range, and I decided to give Pedialyte a try.)

For body aches and headaches I've taken ibuprofen as needed, and it usually helps some. The other stuff I handle as best I can, knowing it will be over soon. (I have 8 more days!). I'm a water-holic and that seems to help, too.

I'm so sorry your side effects appear to be unrelenting. Mine have incrementally gotten better, but I sure will be happy to be done crossing those days off the calendar.

Just wanted you to know that someone else here feels your pain!

All best,

Ella

[almostfinished]

Hi Ella and thank you for the words of encouragement. I am so happy you are almost done, I only have 15 days counting tomorrow. With me it seems as the drug built up in my body (the longer I take it) the worse I feel. I am hoping that when it is finished my body will return to normal. Today was really bad and with no response from the Dr. only being told they were not side effects I really started to wonder what was happening to me. I am ash white in colour and too short of breath to do much but I am still pushing myself to move around. The other posters that have messaged me have mentioned getting my lab numbers which I am going to do. Please let me know how you feel when you finish your treatment.

[KimInTheForest]

If you're truly white and short of breath, it's possible your hemoglobin has plunged. (I speak from experience here.) You could always go to emerg, tell them that is your concern, ask them to run a CBC blood test. You would have results within the hour. There certainly can be other explanations for what you are describing. But that is exactly what happened to me as my hemoglobin fell - white and extremely short of breath. I went to emerg and ended up getting a blood transfusion.

Even if you don't go to emerg, be very vigilant about anything that feels like chest pain when you are white and short of breath.

hope you have answers soon!
kim

[Ella]

Hi Almost,

I will for sure let you know how I''m doing. Like you I am extremely sensitive to medications, so I am optimistic I will feel better once I'm done.

Meanwhile, I second Kim on getting some immediate attention for your shortness of breath and ashy color. I have experienced nothing like that, but my doctor keeps a close eye on hemoglobin for all her HCV patients on medication. If your doctor's office doesn't respond quickly to these symptoms, I hope you will seek out urgent care.

Keep us posted!

Ella

[almostfinished]

Good Morning
I already have an echo and a SF breathing test scheduled. Unfortunately they could not get me in before Dec. 6th. I finish the Epclusa on the first. I have asked my GP and the Pharmacist if I should take the rest of the Epclusa and they said it was up to me, so I continued. They both have maintained none of my problems are side effects. The 12 week blood work is the day I finish the meds. the first so hopefully that will show why I am so ill, the only blood work I have had is at 4 weeks and I was told nothing and had no appt. to go in.

[Lynn K]

Just wondering if you could drop by your doctors office and ask the person at the counter for a copy of your lab results? Unless the office is miles away is that something you could do? You should not have to see your doctor to get your tests.

Do you have a primary care provider you could see now for your breathing problems? My doctors office is part of a group with several doctors they have walk in clinic hours. Or any urgent care places near you? There are so many things that could be going on unrelated to your treatment. With what you are saying about breathing problems it sounds like you really should try to see someone.

[almostfinished]

Hi Lynn:
We are not supposed to use walk in clinics. I phoned the Dr. and the nurse said the breathing test and echo have been booked and the results of the 4 week labs have to be given to me by the liver spec.Every time I phone the liver spec. or the main pharmacist I am told my symptoms are not related to the Epclusa, even though that is when they all started. That is why I came out here to see if any one else has symptoms. Fourteen days to go then if the symptoms go away I will be sure the pills are the cause. Thank you so much for your concern, my family are freaking out.

[Lynn K]

Hi

If you can’t use walk in clinics what do you do if you have a bad cold or an unjury like say a semi serious burn or sprained ankle? Wait for an appointment? The whole point of walk in is to treat people with urgent need outside of the emergency room.

yeah wasn’t trying to say your symptoms are not related but sometimes things do happen at the same time. Several here have had some of the symptoms you mentioned like aching and gastrointestinal issues so those could easily be related to Harvoni.

Just thinking the breathing problems could be a lot of things whether or not they are related to Harvoni you should find out the reason sooner than later. What is coming to my mind is pneumonia which is why I am concerned but obviously I am not a doctor I don’t know your symptoms or medical history.

My mom had emphysema for years before she passed and had a basket full of medicines to help here breath easier. She was also on oxygen. So I guess when you say breathing problems I know how serious that can be.

[almostfinished]

Hi Lynn:
If we have a serious issue and the family GP is not available, we call the on call number and are told to go to the ER. Here that is about a six hour wait, just to be seen. When I questioned why I can't use walk in clinics(we have two) they said the visit would have to be paid for.
If I get any worse I will go to the emergency room.
Thanks again for all your help

[andrew j]

Shortness of breath is a known side-effect of these drugs.
I guess it's just a matter of how serious it is?

[almostfinished]

Thank You for getting back to me, everyone here has been very kind and seem to know much more than me about  the disease and the treatment. The Dr's. here do not tell you very much and give you even less when it comes to results and information. My family is keeping a close eye on me these past few days, and just knowing that other people are having side effects makes me feel like I am not alone. I just got my 4 week results and they show very normal liver functions. I have a appt. Dec. 6 for my breathing and my heart, at a big hospital. If my breathing gets any worse my daughter will come and take me to the emergency room.

[andrew j]

Good.

[Ella]

I'm so glad you have family looking out for you!

[Lynn K]

Hi Andrew

I had not seen that listed as a side effect but will take your word on that

[andrew j]

Hi Lynn,

It doesn't appear on the basic lists - but it's there if you dig around a bit.

In serious cases (where you should immediately seek medical advice) it can be variously due to anemia, taking Epclusa with amiodarone - or it can be a manifestation of an allergic reaction.

On a more basic level - I've noticed it cropping up here and there on the Forum  from time to time.
I know I got it a bit when I was taking Harvoni.

As you guys have said - you do want to keep an eye on it.

(One place I just found was 'Managing Hepatitis C Treatment Side-effects' - HEP - but you'll definitely find reference to it in other places if you look around a bit).

[KimInTheForest]

Here is the link to the Canadian version of the product monograph for Epclusa:
http://www.gilead.ca/application/files/3415/0695/6820/Epclusa_English_PM_e186388_GS-002.pdf

(I recall that with Harvoni, the Canadian version listed a LOT more possible side effects than the US version.)

It does not list anemia as a side effect. (And that was my concern when you said your skin turned white and you were short of breath.) But it does list other things you decribe - although usually in a very small percentage of test subjects. Still, these things are known side effects of Epclusa. So don't let any doctor tell you they aren't. List of adverse effects starts on page 9.

kim

[almostfinished]

Thank you so much for the information, I forwarded it to my daughter. I have had problems with my teeth for over a month and the pharmacist did tell me that it is from the increased stomach acid due to cutting back my acid pills. Also my daughter just checked out the pain pills they sent me and turns out statex is morphine sulphate which is hard on the breathing and the liver. I avoid all narcotic drugs, alcohol, and tobacco as a rule.
So glad to get all the extra help the members here have supplied me with.
Again thanks for your concern, I really appreciate it, I just don't know why they told me I would have "ZERO" side effects.

[Lynn K]

A.
power of positive thinking

B.
That is the advertising

[andrew j]

Yes.

While most people have few, and fairly mild side-effects - some have more serious problems ... and others - are sort-of in the middle! (as Lynn, I think, says, above).

You certainly don't want to be struggling, and at the same time have to deal with health professionals taking this sort of laissez-faire attitude.

Hoping that you are doing OK today almostfinished - and in answer to your question(s): no, it's not just you; and no - you are not alone.
A number of people have come here with concerns.

(You could have a look at pippac's thread further down this section (it's headed up with some question about marijuana - but people have chimed in who are experiencing, or have experienced adverse reactions to Epclusa).
There are other threads at the more serious end of things, also) ...

Thinking of you,

A.

[Ella]

Perhaps they believed you wouldn't have side effects. My supervising nurse practitioner told me most of their patients felt better on treatment. She seemed genuinely surprised at my one month appointment when I told her how awful I was feeling. I was disappointed, but not surprised, as medication side effects seem to be my lot in life. Definitely not the 1% I wanted to be in. 

[Lynn K]

I guess what I meant was they wanted to instill in you the expectation all would be easy as that is the case for most. By bringing up the possibility of side effects the could in some people implant that expectation some worry themselves into side effects because that is their expectation. I am by no means saying people do not have some difficulties with treatment we are not all the same and we don’t react the same to the same medicines.

And B that is what is advertised in the media and probably their experience with other patients the the majority have little to no sides except some mild headaches.

Too bad your doctors office does not understand that is not the case for all patients who take these new hep c meds.

[andrew j]

How are you doing almostfinished?

[almostfinished]

Hi Andrew:
 Thanks for checking on me, I have 8 pills left and I am done, literally.
If the possible side effects of Epclusa had been listed or explained to me I would never have taken one pill. I am unluckily in the small percentage that had very bad effects or probably a partial allergy to it.
 I had my 12 week lab. req. from the beginning so I will go for the  blood work next week on Friday, and hopefully the Dr. will give me some results. I will post any results I am able to get.

[andrew j]

Hi almostfinished,

I'm really sorry that you have had to go through this - as I'm sure the others are.
I guess you just want this to be over, so that you can start getting back to normal?!!

In some ways we are still guinea-pigs for these new drugs - and I certainly think that it's time that more tests / assessments were devised to more closely monitor those that find themselves having a tough time with treatment - like you.

Here's hoping (and praying) that things ease up for you soon.

Best wishes,
A.

[Ella]

Hi Almost,

Just wanted to let you know I took my last pill Thursday night (Thanksgiving), and I started feeling much better Saturday. I felt a little wrung-out -- kind of like when you've had the flu, and you're finally over it -- but I can tell the medication has left the building, and it feels good!

I'm doing some digestive system repair -- pepcid, gas-x, etc. -- but my body pain has gone away. Now I was having cycles of body pain before the medication, so I can't say for sure it's not just a coincidence that it lessened when I finished medication, but I'll take it either way!

You're almost done! Best wishes for your good feelings!

~Ella

[KimInTheForest]

Congrats Ella! Glad to hear you are feeling better now that drugs have departed your body!

kim

[Ella]

Thanks, Kim.

I felt so much better at work today. What a relief!

Now the anxious waiting begins. Tick tock...

~Ella

[almostfinished]

Hello Everyone;

Took my last pill right now so I will have to change my profile from on treatment but don't know how. Thank you all so much for your replies, I am still quite ill and have a dozen tests booked plus my 12 week blood work.

If it's the last thing I do I will lobby to get more of the side effect listed as a possibility on the Epclusa information. I am hoping and praying I will get back to my old self quickly as I was a very active and busy person.
Hope everyone out here is doing well and I will post any blood work results I can beg from my Dr.

[KimInTheForest]

Congrats on reaching the finish line, almostfinished!!! I hope you recover quickly.

kim

[Lynn K]

Congrats on finishing treatment!

Not sure if you have seen this information from the prescribing information sheet as far as how to report the symptoms you experienced on treatment so here it is.

“To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.”

Hope you are feeling better soon