Author Topic: starting Epclusa (Read 14265 times)

sammantha55 · « **on:** October 22, 2016, 01:31:16 pm »

Hi All
New to forum and grateful that I have others to interact with for support.I have been approved for Epclusa and have my meds here ready to go but have been hearing S.E are minimal for some and horrible for others, I am so anxious and anticipating the worst but then again I need to realize that I'm one of the lucky ones who have been given the opportunity to be on this new treatment.Worried about sleep most of all and anxiety while going through the course but also reading that after the first month it gets better, I am also fortunate to have zero liver damage and in great health besides having this virus so that is an advantage I'm also grateful for. looking forward to speaking with others who understand what were going through!

FutureThinker · « **Reply #1 on:** October 22, 2016, 01:43:12 pm »

Hi Sammantha55 and welcome! Glad you found this forum, it was a Godsend for me both before and during treatment. You will find a lot of support here, so vent or cheer!

I know your concern re: side effects. They scared me to death before starting treatment. These are powerful drugs and our imaginations can run wild. I know mine did! But, my 12 week course of Harvoni was a piece of cake ---- it was such an unexpected surprise! I would encourage you to keep a positive attitude and not assume the worst is going to happen, as it may very well not. Hydration is key, so be sure you are drinking enough fluids to counteract the dehydrating effects of the medicine. Eat well and try to get enough exercise -- focus on getting healthy and out from under this cloud that is over your head. It may well turn out to be a "piece of cake" for you, too.

Lynn K has a great saying that I have copied on my bulletin board that you may find helpful:

"Don't borrow worry and disappointment from a tomorrow that may never come."

Keep a positive attitude, be thankful you have this treatment available to you, and remember -- the future is bright! Take care and keep us posted on your journey, FT

sammantha55 · « **Reply #2 on:** October 22, 2016, 02:14:38 pm »

Thank you future thinker , I needed to hear that, sometimes reading too much info can scare you off, reading that people are having post side effects from Harvoni saying it causes cell damage , rheumatoid arthritis and heart problems.. I have no underlying health problems and mostly anxious about developing some after tx, I know i'm being ridiculous but need to research everything from these drugs because they are relatively new.. Congrats on finishing treatment and thank you so much for the encouragement..

))))

Phoenix17 · « **Reply #3 on:** October 22, 2016, 02:27:45 pm »

Hi Sammantha- Welcome ! I am on week 6 of Epclusa. The only side effects I had were a few slight headaches that would come and go if I didn't drink enough water. Water is your friend while on treatment. A gallon of water a day will keep the side effects away! I don't have any sides any more. Feeling pretty good! Not feeling as tired as I was pre treatment. No sleep problems for me at all!
I went from a VL of over 22 million to plain old 36 in 4 weeks. Well worth any side effects, although you may not have many problems.
I haven't heard of many people that have had problems with Epclusa.
I know you will do well! Drink your water and think good thoughts!
Let us know how you are doing. You will win!!!

sammantha55 · « **Reply #4 on:** October 22, 2016, 02:36:25 pm »

Thanks Phoenix, already two encouraging replies, so glad I found this forum as I've been a train wreck in anticipation of starting tx..seeing my GI on wednesday and then its a go so I'll probably be on here a lot for support..looking forward to being post tx and encouraging others who are starting as well

Phoenix17 · « **Reply #5 on:** October 22, 2016, 03:19:23 pm »

I know you will do well Sammantha! So many people here to support you. I know you will do well. Keep us posted. Don't hesitate to ask anything. There are a lot of knowledgeable people here!

MommaT · « **Reply #6 on:** October 22, 2016, 03:47:16 pm »

Hi Samantha-

I am starting wk 6 and I had the same reservations and even delayed my treatment for 2 weeks. I also was reading about Harvoni and concerned about effects-so I know where you are at.

I guess I went ahead but, I needed encouragement from my family and the people on this forum. You see I am having side effects from Hep the C already.

The medication Epclusa has not given me any new side effects just more brain fog than normal. I think the anxiety is the worst but, once you commit you slowly keep telling yourself that treatment is short and you will be better for doing it.

I hope this helps you! I see a brighter future! We are here for you-

sammantha55 · « **Reply #7 on:** October 22, 2016, 05:15:40 pm »

Thank you Momma T, you sound like me with reservations, I am so relieved to find others here on the same path who are going through the same experiences, my husband who is hep c free is very supportive but no one can understand how it feels unless you're going through it so huge thanks to everyone here for your encouragement, I feel better already..glad to hear you're all doing well and not suffering horrible sides..

MommaT · « **Reply #8 on:** October 22, 2016, 05:33:14 pm »

Thank you Samantha-

I totally understand the isolation of having this disease! I come to this forum to find people that understand me. I really think even though my family is supportive that they will never really get me.

I am glad you feel better and I know how a few kind words... means everything!
Have a good weekend and try to calm yourself as I will, too.

sammantha55 · « **Reply #9 on:** October 22, 2016, 05:54:41 pm »

Gotta be positive and get through it, i prefer to say 12 weeks instead of three months it sounds shorter. 8)I do have a question about anxiety or insomnia, i don't take medications for anything but wondering if anyone here on Epclusa takes sleep aids or anti anxiety meds, I may need them to get through..Im not sure about drug interactions , i'll ask my doc on Wednesday.have a great weekend everyone and thanks again..

FutureThinker · « **Reply #10 on:** October 22, 2016, 06:22:05 pm »

I agree that no one knows all the myriad of emotions w/ this disease like those who have it, despite all the supportive family & friends one may have ---- I think that is why this forum is so important. Whatever it is you're experiencing, it is likely someone on here has been thru it!

I've had trouble sleeping for quite a few years, so did not notice any increase in that while on treatment -- actually, I sometimes slept better. While I still don't sleep as soundly as I did years past, I am overall sleeping better now than before treatment, falling asleep more quickly and going back to sleep more easily when I do wake up. So who knows? Your doctor will be able to help you w/ any sides you may encounter, so just talk to him/her openly about any of your concerns.

The detrimental effects of stress on our health are well documented, so trying to "stay calm and carry on" is a good reminder for all of us. Keeping a positive attitude and avoiding stressful triggers when possible is helpful. Just take a deep breath and think good, healing thoughts! My theme song during treatment was Queen's "Another one bites the dust"! It was so much fun to imagine those little virus buggers crumbling like dust. Made me feel in control of my body instead of them. You will get thru this and one day look back in amazement that it flew by so quickly. FT

bluebird · « **Reply #11 on:** October 22, 2016, 06:24:55 pm »

Hi Samantha and welcome to the forum! I started my second week of taking Epclusa. I was mentally prepared to a nausea, dizziness, headache and many other possible side effects i heard about, but believe or not - so far, so good. No side effects. As a matter of fact, I noticed ( especially yesterday, day eight) that suddenly I have too much energy... as i used to have several months ago. I am a very energetic person, but earlier this year( starting in April) I suddenly lost interest to work, to hanging with friends, to my little garden, cooking, to everything around me. I spent all my weekends and days off laying down, because i felt week and dizzy. I knew something is not right. That was the reason I went to see a doctor and had a blood test, which was positive for hep c plus compensated cirrhosis. Back in 1990 I had a blood transfusion, that is how I got infected. But.. long story short- don't be afraid. Everyone is different, with different genetics,lifestyle, stress level, age and mentality.The drug effect can't be the same to everyone. No matter what -You should stay positive. I read about a gallon of water. I don't drink a gallon. There is a formula of how much water you should drink according to you height, weight, age and activity. I drink no more than 70-80 oz/day. Leave a gallon to a muscular man:) Good luck to you! I know you will be just fine!

Phoenix17 · « **Reply #12 on:** October 22, 2016, 07:33:46 pm »

Hi Sammantha - I do take anti anxiety meds. I started a few years ago when going thru menopause. That was worse than the hep c in my opinion : ) Well maybe not, but it was close. I was going to stop, but hep c came along and with it some anxiety, so we decided to keep going with it for a while longer. Just 20 mg of Citalopram a day. I think it has made a difference. The specialty pharmacy said that there are no interactions between the 2 meds. Talk to your doc about it if you feel like you need to.

sammantha55 · « **Reply #13 on:** October 22, 2016, 08:40:18 pm »

Great advice, have a list of questions and concerns I'll run by him, I've received more knowledge from these posts and from your replies than my doc so again much appreciated..My husband is thankful I've found this forum ,I was driving him nuts with anxiety, he was ready to pull the plug and hide the computer. It's a good thing to research any new drug but sometimes it can do more harm than good, i've found some horror stories on you tube and other forums which had me stressed out but seeing more positive than negative experiences on these posts..I see so many different stages of the disease with members here , its interesting how it can effect us all in different ways..you are all champions and a great inspiration..

Mw2324 · « **Reply #14 on:** October 23, 2016, 07:31:14 pm »

Sammantha,
Welcome! I am on week 7 of epclusa. I also had anxiety before taking the first dose and the approval process happened so fast for me (4 days) so I had little time to prepare myself. I was taking melatonin or benadryl to help me sleep for the first 3 weeks but always check with your dr. I haven't taken anything since and sleep ok. I had insomnia problems prior to starting epclusa. I notice I wake up more frequently during the night now but am able to fall asleep quickly. As for side effects, I have done a lot of research and everyone is different. I have had some side effects..... brain fog, headaches, back and chest pain after taking the medication, and being very tired. I do work alot, probably more than I should right now. Drink water and decide on when you are going to take the pill, in the morning, afternoon or night. I opted for night. If you do feel side effects, don't be discouraged but hopefully you do not. Best of luck to you!

sammantha55 · « **Reply #15 on:** October 25, 2016, 01:44:38 am »

Thank you Mw,happy to hear you're sleeping,Ive been stressing out about the unknown and especially about sleeping,Ive been wondering what the best time of day to take so night time is the way to go ,I'm having side effects before I even start

. Thank you for all your support and hoping you have a smooth ride till the finish line

Mw2324 · « **Reply #16 on:** October 25, 2016, 06:20:22 am »

Sammantha,
Try not to worry yourself too much. All of the side effects, if you experience any at all, are all very manageable. I worried about sleep too but epclusa is my sleeping pill. It puts me right to sleep at night. I think you'll sleep fine. Keep us posted, you'll do great.

rk · « **Reply #17 on:** October 25, 2016, 03:21:03 pm »

Quote from: sammantha55 on October 22, 2016, 01:31:16 pm

I am so anxious and anticipating the worst but then again I need to realize that I'm one of the lucky ones who have been given the opportunity to be on this new treatment.

Hi sammantha, and welcome.

Your statement above is a good way start your new adventure. None of us new what would happen yet most was pleasantly surprised. Like you sleep and anxiety was tops on my list. I have never slept great and nothing has changed. My anxiety is lower mostly because little has changed. I went through what is referred to as brain fog and I felt hyper, excess energy. Now the best news, after having HCV for untold years after 12 days on epclusa HCV was not detected! I hope that helps put your mind at rest. You will be cured like all of us with minimal side effects! be well, Rod

sammantha55 · « **Reply #18 on:** October 26, 2016, 01:07:13 am »

Mw and Rob,I see my doc tomorrow and will be asking questions, thanks to this forum I know the right ones to ask.Cannot tell you how much your support means, it seems like the first two weeks are an adjustment period so it might be wise to take that time off work to rest and get used to it..wish I wasn't being such a baby, gotta stay away from those post tx comments,thinking the worst..congrats on making it this far on your treatment, can't wait until i'm on the other side giving support to the newbies..

sammantha55 · « **Reply #19 on:** October 26, 2016, 02:10:26 am »

Mw and Rk ,if you take in the evening what time would you suggest taking the dose.

rk · « **Reply #20 on:** October 26, 2016, 03:25:31 am »

sammantha, I take it in the morning. I thought about night but I was scared of not sleeping plus trips to the bathroom. I feel I made the correct decision, I was hyper through the first week. If it helps or puts people to sleep it will probably keep me awake. I am not normal in that area. I think some don't drink much plus their blatter is in good shape. Its hard to be sure, however you can change dose time by an hour each day to a new schedule. Ask your doctor.

That's ok, everyone needs some assurance, its a new frontier. You learn beyond the basics here then confirm with your doctor. Once your footing is secure it will be a lot easier. So try to relax it did not happen all at once and the cure does not either; especially when negatives drive your mind. Believe me it will be ok, everything will come together. Wish you the best

sammantha55 · « **Reply #21 on:** October 26, 2016, 10:17:58 pm »

Right Rod,I'd be up all night unloading all that water too but I guess it's an individual choice and what we tolerate best.Feeling more positive ..thank you all again,I feel a weight lifted off my shoulders just by everyone's encouragement here!

elias · « **Reply #22 on:** October 26, 2016, 10:28:24 pm »

Hi Samantha:

Hope all went well with your Dr's visit. Vaguely recall it was today, Wednesday.

I am having some insomnia, but not more than before the Epclusa. Otherwise, pretty smooth so far

sammantha55 · « **Reply #23 on:** October 27, 2016, 12:50:27 am »

Hi Elias ,
Things went well,saw my nurse practitioner and she was reassuring so it looks like I'll be starting in December due to work issues have to wait until then but have all the meds ready to go and feel positive about it thanks to all the support I've received here on the forum.So happy to hear you're not having a difficult time of it,Sorry your insomnia won't let up.I'm finally sleeping better and anxiety has decreased which helps with that.Please keep us updated on how you're doing,I hope it continues to be smooth sailing for you.thank you for checking in and take care

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Author Topic: starting Epclusa (Read 14265 times)