Michaele, hydration def. plays a role in the "brightness".
Mugsy, happy your Dad is doing better!
Ro
Michaele said
Dec 12, 2014
Hey Mugsy , Glad to hear your dad is doing well.
Im always gulping green tea and water and lately juice . Maybe it is dehydration , but I thought it could be the combo of tea , veg lax and the Harvoni. But I mostly wondered about the Harvoni. Thanks for heads up.... Michaele
Mugsy said
Dec 11, 2014
Michaele wrote:
Mugsy , hope your dad is doing well. I was wondering if anyone has notice their urine becoming bright deep orange on Harvoni,
-- Edited by Michaele on Thursday 11th of December 2014 06:14:40 PM
Hey Michaele. How you doing? Yes, I have had a few neon orange urines, but I think it was on days I did not drink enough water. Try upping your hydration, maybe?
Thanks for asking about my father. He should be released to the cardiac care rehab place tomorrow. He is amazing!
Michaele said
Dec 11, 2014
Mugsy , hope your dad is doing well. I was wondering if anyone has notice their urine becoming bright deep orange on Harvoni,
-- Edited by Michaele on Thursday 11th of December 2014 06:14:40 PM
shadow10cats said
Dec 10, 2014
RE FMLA - I am kind of an expert on it so if anyone needs any help I may be able to help. I actually work for the NYS Dept of Labor and I found that they were implementing the FMLA program incorrectly. After speaking with the Federal Dept of Labor who oversees the program; I got the correct info and "informed" the staff at NYS DOL they were not handling FMLA correctly. They weren't happy but OH Well - it was pretty messed up. But in the process I learned quite a bit. I've been on it for years myself also. With Hep C if I miss some work I don't have to worry about my job. Yes, working for an entity like the NYS Dept of Labor and being protected by a Union makes it hard to get terminated but if they don't like you they can still make your life miserable. Anyway I may be able to help if an employer tries to scare you off from going on it; or if you have any questions.
Harvoninme said
Dec 10, 2014
fourlocos wrote:
I work part time for five different companies. I do not think that I am entitled to anything since we don't have benefits. I am covered under my husband's insurance. If I can just get through next week I will be home free as far as having more down time. This is our busiest time of year till xmas. I will try to hold off having to call off work as long as I can for now. Thanks for the advice though
I owned a small business for a while. I kind of understand. This might be a tough week for you. Take it easy and pamper yourself when you can. I journaled a lot through the worst of it. You may need to take a few steps back now, but try to keep in mind you'll be charging full steam ahead very soon. Fours days before I started treatment, my MIL broke her leg and could not care for herself or her aging husband. I had to step up. I don't know how I got through those first few weeks. But I did.
Take it one day at a time. :) A stronger, healthier you is about to emerge.
-- Edited by Harvoninme on Wednesday 10th of December 2014 09:49:56 PM
Michaele said
Dec 10, 2014
Thanks pamelajean , Im really glad to hear this. I started Harvoni on 12/6 . And I feel awful, but its not the Harvoni, Ive felt this was for a month or so before I started. Ive been running a low grade temp QD for past 2 wks , ever since I had a EUS with biopsy on a cyst. So guess Im lucky not to have alot of side effects, but they may be masked by over all yuckiness. Michaele
fourlocos said
Dec 10, 2014
I work part time for five different companies. I do not think that I am entitled to anything since we don't have benefits. I am covered under my husband's insurance. If I can just get through next week I will be home free as far as having more down time. This is our busiest time of year till xmas. I will try to hold off having to call off work as long as I can for now. Thanks for the advice though
fourlocos said
Dec 10, 2014
My doctors nurse upset me so much that I drove to work and put about four hours in. It wasn't easy.... nope but I did it to spite her. She acted like I was some wimp. Getting angry actually helped me out the door. Now as the next pill approaches so does my anxiety but I will do it! I must do it!
Tig said
Dec 10, 2014
Hello,
Bill, FMLA stands for "Family and Medical Leave Act". Loco, here is a link to the Dept. of Labor website that explains it and the process. If you need any additional help navigating through the process or anything, let us know. I hope you're feeling a little better!
I'm not so up to date with all the acronyms I think FMLA means that Family leave or illness time 12 weeks? I did apply for it before I started doing the inciveck triple I was real worried about not having a Job by taking off. It worked very well Of course there is only your sick time and if you qualify for temp disability. But the law is on your side here They can't fire you and have to take you back. If not Law suit. Most employers don't even want to challenge it. And back right off and open the door. i didn't take the full 12 weeks I only used 8 I needed the distraction of work to keep moving.
you may be really surprised on how much your peers and management at work will support you in this ( they are people with families too). I was shocked by their compassion
It all starts with doctor filling out forms think about it peace of mind will also help in you fighting the virus. Best of luck Fourlocos
Mugsy said
Dec 10, 2014
fourlocos wrote:
Hello. I started my first pill yesterday with dinner. It has hit me hard. I don't feel good at all and so far can't leave for work. I am feeling too fuzzy headed and hung over to drive a car let alone work. Will this get better over time? I might be the first treatment failure if I can't make it to work. This disorientation feeling has me very anxious which isn't helping. I need more sleep! I normally am up at 5am and at work already. This is scary because I will lose my job if I don't show up. I also had the runs during the night and this morning from it. I wish I had someone to talk to since I am worried I won't be able to leave home.
Hey there, fourlocos. I am on day 18 of Harvoni and yes, it does get better. My nausea, head aches, insomnia, and joint pain are all so much better now. In my case, I think I spent too much time anticipating and looking for side effects in the beginning and I think that wasn't helpful at all. Try to relax a little about it and get outside for a short walk if you can. My fuzziness is still here ( much better, but still here) and I have the opposite problem as far as diarrhea! I also read that Harvoni can cause sinus problems so I started using a saline nasal spray and it actually helps with the headaches and pressure. Plus, the spray can't harm you, except maybe a couple bloody noses, but the relief was worth it. ma snart is right, if you can take a couple days off it might be a good idea. Hang in there, it will get better. And congratulations on starting treatment.
Mary
-- Edited by Mugsy on Wednesday 10th of December 2014 07:20:19 PM
ma snart said
Dec 10, 2014
Tig, really so few people actually understand the rules of FMLA, applying for it with documentation can alleviate so many worries about lost days for side effects or simply being drained from fighting the virus, the law requires employees be advised to file for it when there is issues with illness and attendance.
Snart
Tig said
Dec 10, 2014
Snart has provided some excellent suggestions! I also got a lot of relief from the generic Zofran (Odansetron) for nausea/vomiting. It is definitely worth asking for if it continues. We had another member here that utilized FMLA during treatment and it worked out very well for him. It's worth investigating if you decide some extra time off will be required. Do what you have to to finish treatment, it's very important! But you know that! We like to remind you though! Call it friendly needling!
Tig
ma snart said
Dec 10, 2014
fourlocos wrote:
Hello. I started my first pill yesterday with dinner. It has hit me hard. I don't feel good at all and so far can't leave for work. I am feeling too fuzzy headed and hung over to drive a car let alone work. Will this get better over time? I might be the first treatment failure if I can't make it to work. This disorientation feeling has me very anxious which isn't helping. I need more sleep! I normally am up at 5am and at work already. This is scary because I will lose my job if I don't show up. I also had the runs during the night and this morning from it. I wish I had someone to talk to since I am worried I won't be able to leave home.
If you have been employed for over a year at your current job, you should definitely apply for FMLA, you don't have to use all 12 weeks at once, a day here and there and no one can fire you from your job.
ma snart said
Dec 10, 2014
My wife Helen had very bad case of nausea for the first week or so, now after two weeks not so much, her doctor prescribed ZOFRAN or generic Ondesetron for the nausea and it helped a great deal.
Snart
Tig said
Dec 10, 2014
Hi FL,
I'm sorry you're having a problem this morning. One of our members on this Tx will drop by and give you some first hand advice soon. I remember you mentioned that you're sensitive to medication anyway, so I'm hoping this is just temporary. We've had others complain about the diarrhea. Can you call your doctor for some advice? There are some OTC medications that will help. In the meantime, oatmeal, toast and tea may help put some substance to it. The first week is always the hardest to get through. Your body is trying to adjust to those powerful medications and it doesn't like it. Hang in there and give yourself time to adjust. If you have a day or two of sick time, I'd use it if possible. Do your best to not let it stress you out already! Give your doctors office a call and describe what you're experiencing. Stay in touch! We're here for you...
Tig
fourlocos said
Dec 10, 2014
Hello. I started my first pill yesterday with dinner. It has hit me hard. I don't feel good at all and so far can't leave for work. I am feeling too fuzzy headed and hung over to drive a car let alone work. Will this get better over time? I might be the first treatment failure if I can't make it to work. This disorientation feeling has me very anxious which isn't helping. I need more sleep! I normally am up at 5am and at work already. This is scary because I will lose my job if I don't show up. I also had the runs during the night and this morning from it. I wish I had someone to talk to since I am worried I won't be able to leave home.
pamelajean said
Dec 10, 2014
Michaele wrote:
Mugsy, Im waiting for Fed X as I play catch up reading posts, Does your liver really feel less inflammed? Wonder what, if anything it does for the portal hypertension . Michaele
All cirrhotics will develop portal hypertension. That means increased pressure in the portal venous system. The severity varies widely. The main reason is narrowing of the portal vein branches by fibroblasts ( scar tissue). After SVR, the scar tissue is resorbed, the portal vein branches can dilate and the pressure decreases. This is why cirrhotics won't develop new varices after SVR, and existing varices may shrink. The early changes of portal venous gastropathy can be resolved. Scar tissue in the liver can resolve in many patients. It is still uncertain, but wide bands of scar tissue may not be completely resolved. In up to 80% of cirrhotics, liver cell regeneration occurs, and liver failure becomes unlikely. The risk of HCC remains but is significantly less. So overall, cirrhotics can reasonably expect a normal life span after SVR.
Dzdayscomin said
Dec 9, 2014
Mugsy wrote:
Thank you all for your kind words and prayers. He is doing amazingly well for an 83 year old. He drove an hour home after Thanksgiving feeling poorly, turned around and drove himself to the ER. They ambulanced him back to Boise and he was talking and using his phone and his vitals were just fine during the hour drive. Got checked into his hospital room and was talking to his cardiologist and had a massive heart attack right in front of him! He was essentially dead and they brought him back from the Widow Maker. He's out of the ICU and the prognosis is very good. He's a tough old bird.
Michaele, I had to laugh as I was reading your report and I'd felt the same way about the diarrhea, but nope....I'd rather those icky HCV bugs would exit my body a little quicker than they are. Someone had mentioned how their headaches felt like sinus headaches so I tried using a saline nasal spray and it seems to relieve the pressure in my head. I find I am tired a lot recently, but I am sure it is related to life, not HCV. Had my 2 week blood draw today and I am anxiously awaiting the results.
Thanks again for your support. You guys are awesome.
Mary
Prayers go out to you and your family while you deal with this Mary!
Gob Bless and good luck.
Cinnamon Girl said
Dec 9, 2014
Mugsy, your dad sounds absolutely amazing for an 83 year old! Really pleased to hear how well he`s doing, and he obviously has all his mental faculties intact to react so quickly when he realised he needed medical assistance. Great to hear that, thanks for giving us the details, I didn`t like to ask too much.
Best of luck, good to see so many of you getting on with your Harvoni treatment!
Michaele said
Dec 9, 2014
Mugsy , Glad to hear your dad is doing better. We are all praying for your family.
Im not feeling more tired . And I found that sometimes when I feel to sick to get up and do something , I get that small window of time when I feel pretty good . Then I jump up and run out the door and get on with life. It usually makes me feel better; until I get back home and settle in. Then it all catches up with me.
Last night my son was cooking, who knows what and the smell whaffed up into my room. I thought I was going to hurl. He did it twice. And when I got up this morning the downstairs of my house looked like there had been a frat party. Have a Good One MIchaele
Mugsy said
Dec 9, 2014
Thank you all for your kind words and prayers. He is doing amazingly well for an 83 year old. He drove an hour home after Thanksgiving feeling poorly, turned around and drove himself to the ER. They ambulanced him back to Boise and he was talking and using his phone and his vitals were just fine during the hour drive. Got checked into his hospital room and was talking to his cardiologist and had a massive heart attack right in front of him! He was essentially dead and they brought him back from the Widow Maker. He's out of the ICU and the prognosis is very good. He's a tough old bird.
Michaele, I had to laugh as I was reading your report and I'd felt the same way about the diarrhea, but nope....I'd rather those icky HCV bugs would exit my body a little quicker than they are. Someone had mentioned how their headaches felt like sinus headaches so I tried using a saline nasal spray and it seems to relieve the pressure in my head. I find I am tired a lot recently, but I am sure it is related to life, not HCV. Had my 2 week blood draw today and I am anxiously awaiting the results.
Thanks again for your support. You guys are awesome.
Mary
Ro said
Dec 8, 2014
Mugsy,
Sending out prayers and positive thoughts to you and your family! Hope your Dad is improving!
Take care of yourself!
Ro
Cinnamon Girl said
Dec 8, 2014
Oh Mugsy, I`m so sorry to read that your dad has had a heart attack, I`ll keep you and your family in my thoughts. I don`t want to intrude but you know we`re all here for you.
Hoping and wishing for the best. Hugs, Jill x
Michaele said
Dec 8, 2014
Mugsy , Sorry about your dad . Hope you are handling the stress on your own terms. I'll say a prayer for your family.
Im on dose 3 and feel like I usually do: lousey. But the good part is I cant blame it on the Harvoni , as I have migaines, so Im nauseous and have a headache all the time anyway. I have been an insomnic since childhood so Im used to not sleeping. I read it can cause diarrhea , now there is a side effect I could benefit from. I could same money on all the stool softeners and veg laxatives that are not working. Actually, being rid of the stress of anxiety caused by the off and on again has made my mind feel clearer than in yrs.
God Bless You Mary........ Michaele
Tig said
Dec 8, 2014
Hi Mary (Mugsy),
I just saw your sad news regarding your Father suffering from that heart attack. I'm so sorry to hear that terrible news and wanted to check on both of you. I pray he is doing well and will hold you both in my thoughts and prayers. Let us know if we can help and please keep us informed on his condition. My best to him and your family!
Tig
justme50 said
Dec 8, 2014
Other than slight headache, I noticed less pressure almost immediately. I have a very good appetite also.
Mugsy said
Dec 7, 2014
Michaele wrote:
Mugsy, Im waiting for Fed X as I play catch up reading posts, Does your liver really feel less inflammed? Wonder what, if anything it does for the portal hypertension . Michaele
Michaele I am so sorry I haven't been around to cheer you on. After I was sure I wasn't infectious from the GI bug, I had to fly to Idaho because my father had a massive heart attack and I just got home today.
Yes, I could feel less pressure within the first couple days. It has now been two weeks of Harvoni and I get my metabolic panel tomorrow. My headaches are gone and the nausea is nearly gone, too. I still feel a bit foggy, a little insomnia and I don't always follow conversations, but that could be due to being tired and stressed. But I do feel good!!
How are you doing? It is going to take me a while to read through all the postings since Dec 2 so if the answer is in there somewhere, I'll get to it.......after I sleep for 12 hours! Hope you are doing fantastic!
Mary
Michaele said
Dec 5, 2014
Mugsy, Im waiting for Fed X as I play catch up reading posts, Does your liver really feel less inflammed? Wonder what, if anything it does for the portal hypertension . Michaele
Harvoninme said
Dec 5, 2014
hepCFREEwanab wrote:
My husband Angelo has been on Harvoni since November 24th. He is scheduled for his first Blood test ( 2 weeks after starting)
This is what it says on the script:
HEP C VIRUS (HCV RNA), QUANT, REAL _TIME PCR
Check HVC viral count at 2 weeks and 4 weeks after starting HARVONI
So far his Side effects are basically NONE, except for one.... HE IS ALWAYS HUNGRY! Is this happening to anyone else on Harvoni? Other than that it's almost as if he's taking a sugar pill. Compared to his previous treatement , this time around it's really a "miracle" that he is doing so well!
Mena
Thanks for the update, Mena. It's a blessing he's cruising through this with no sides. Because I have been noticing more SEs & symptoms through my Harvoni TX, I've been reading every thread I can find on the subject. Some people simply have no side effects they feel are worth mentioning. Among other SEs, I've had a decrease in appetite. I was hungry in week 3, but have lost 14lbs since starting treatment on Oct 31st. In my case, I'm not complaining about the weight loss, just sharing. ;)
Wishing your husband a speedy, mellow treatment!
Ro said
Dec 5, 2014
Mena,
Same here! No side effects except ALWAYS hungry! Went to doctor yesterday and gained a few pounds. I told her appetite has improved at the wrong time: all those holiday goodies LOL!
Had my 4 week labs drawn today!
Very anxious to see my viral count!
Sending positive thoughts to all
Ro
hepCFREEwanab said
Dec 5, 2014
My husband Angelo has been on Harvoni since November 24th. He is scheduled for his first Blood test ( 2 weeks after starting)
This is what it says on the script:
HEP C VIRUS (HCV RNA), QUANT, REAL _TIME PCR
Check HVC viral count at 2 weeks and 4 weeks after starting HARVONI
So far his Side effects are basically NONE, except for one.... HE IS ALWAYS HUNGRY! Is this happening to anyone else on Harvoni? Other than that it's almost as if he's taking a sugar pill. Compared to his previous treatement , this time around it's really a "miracle" that he is doing so well!
Mena
Mugsy said
Nov 30, 2014
Tig56 wrote:
I'm very sorry your sweet lil cesspool infected all of you! Gotta love em! Hope you're feeling better. Good luck on your upcoming tests!
Tig
I'm sure all my kisses and hugs were what infected me!! Can't help myself. Thanks for your kind words.
And Isiscat, you made me laugh! I am glad you opened your big mouth. And I'm sure my husband thanks you, too. My riba rages would not have been pretty. I'll gladly be your bunny.
Isiscat2011 said
Nov 30, 2014
Hi Mugsy:
Don't you dare feel guilty. You need tx right now and everyone else will get theirs too. I can't tell you how happy I was to see that you got tx. I had actually been feeling a little guilty for suggesting that you consider waiting for the all orals when you first came here. I thought, "If Mugsy doesn't get DAA tx right away, I'm going to feel terrible for opening my big mouth." Thank goodness you have. Matt, Beacon, Michaele, and I, and many others are right behind you. You are doing us a favor by being the test bunny who can tell us how things are going so far.
-- Edited by Isiscat2011 on Monday 1st of December 2014 02:39:52 AM
Tig said
Nov 30, 2014
Don't feel guilty Mugsy, you're one of the lucky ones! This will get straightened out eventually and when it does we'll need treatment experienced veterans to continue on with support and information for those starting. This same thing has happened to many people using different protocols along the way. Someone has to be first and fortunately you are it!!
I'm very sorry your sweet lil cesspool infected all of you! Gotta love em! Hope you're feeling better. Good luck on your upcoming tests!
Tig
Mugsy said
Nov 30, 2014
Well, it is day #8 of Harvoni. Things were going great until Thanksgiving and my adorable little cesspool of a grandson passed a wicked stomach bug to us all! We thought it was food poisoning because we were out of town and had ordered dinner from the local deli, but when people got home, they passed it on to others who didn't eat our food. I was so afraid I'd upchuck my golden pill I just kept saying don't puke or you'll have to dig for it and retake it! Sorry for the TMI but other than the slight headache, spaciness, and a little stiffness in my joints, I seem to be tolerating the meds just fine. My first blood test is scheduled for Dec.8th and first viral load will be Dec.22nd.
I will admit to feeling guilty when so many of you cannot get the medicine you need and deserve.
And yes, I have forgiven my germy little grandson.
angelseven said
Nov 28, 2014
the first 6 days were the worst for me with harvoni... bad headaches, worse on day 6, after that things started leveling out with the headaches and spacy feeling.. I take at 6:30 am, sleep has been really good the whole time and i have more energy...very cheerful... on Day 10
Mugsy said
Nov 28, 2014
Beacon,I hope you get your hands on those pills soon. As far as when to dose, night dosing works for ME and I would never attempt to tell anyone else when they should. It seems to work for me, but we all have different lifestyles and schedules and need to do what we or our doctors feel we need to do. My hepatologist fully supports my choice to night dose. I just want us who need it so badly to receive the medicine soon, now, today! But dealing with several different companies and doctors makes things tough. Hang in there.
Can't wait to hear you tell us you are onboard the Harvoni train.
Mugsy
Beacon said
Nov 28, 2014
Mugsy,
I'm F4 with cirrhosis and not in a fight for treatment yet and hope it doesn't get to be down and dirty.
I just saw the specialist doc who sent me for lab work the same day. So you know the routine she needs those
back before she can do the prior authorization. It would seem to be a bit of a dilemma about when to take
your medication...morning, evening, or night. Different people would be faced with different situations
due to personal circumstances such as work. Night would work as long as there is no insomnia and maybe
since the body seems to heal at night then maybe night would give the Harvoni time to do its' job with no
interference since all systems are kind of dormant and in shutdown mode. At night I could take meds at the
same time, but I'm up at 4am week days for work but on the weekends I don't wake up that early so I
would have to set the alarm for weekends. And once you choose one or the other it might not be good
to suddenly switch dosing schedules 12 hours or so. Ok I'm ahead of myself. But first let me get my hands
on those Harvoni pills and then....decisions....decisions....
Harvoninme said
Nov 27, 2014
I'm taking mine in the mornings. Within 1-2 hours I feel a flush, sometimes chills. For me, beyond general fatigue, the other SEs come and go... here I am up early again because of SEs (cramps & sweats).
I'm reluctant to change my pill time at this point. Once it builds up in the body, it may not matter much.
Trip wrote: I would disagree, for me i think day time dosing is better. The medication is probably at its strongest during the first hours after taking it which might potentially disrupt sleep patterns.
Trip2 said
Nov 27, 2014
I would disagree, for me i think day time dosing is better. The medication is probably at its strongest during the first hours after taking it which might potentially disrupt sleep patterns.
LC said
Nov 27, 2014
You know, before I was diagnosed about a couple of years ago, a doctor mentioned I had an enlarged liver. I thought it was due to alcohol. So I guess that's another good thing to come from treatment.
Isiscat2011 said
Nov 27, 2014
Thanks, Mugsy. I'm sold on the night dosing. Wow, I can't wait to feel my liver get smaller.
Mugsy said
Nov 27, 2014
Isiscat2011 wrote:
So, do you recommend taking it at night, Mugsy? Glad to hear that things are so far so good!
Oh Isiscat, I am not the one to give recommendations to others, especially after only 4 days but night dosing seems to be working for me. I have had the best sleep the last couple nights haven't had the usual hard time falling asleep and have only awakened a couple times and then went right back to sleep.I do not think I have side effects aside from morning headaches that go away with coffee and a little stiffness in my neck(maybe from sleeping so deeply?) But I must confess I was skeptical when people were saying they felt their livers had reduced in size very quickly...well, it is true for me, too. I can sleep on my stomach comfortably and bending over to beach comb doesn't feel like I am squishing everything inside. I do have to remind myself to drink more water. And I seem to be a little spacey, too.
Again, I am just a couple days into this, but I think night dosing works for me. Can't wait to hear that you Michaele and Matt have started, too. Are there any more F/3-F/4s still fighting for treatment still?
Happy Thanksgiving to you all.
-- Edited by Mugsy on Thursday 27th of November 2014 10:35:12 AM
Harvoninme said
Nov 26, 2014
Angle wrote: There is another guy that has the aching body thing going on... I have none of that, thank goodness. It is very strange, the sides are so different for everyone... some guys have virtually NO side effects!!!
I know! sighs. lol Time's flying, thankfully.
Harvoninme said
Nov 26, 2014
angelseven wrote: "what side effects does it list??"
Tiredness, headache, nausea, diarrhea and difficulty sleeping. Then it lists basic allergic reactions to all drugs (itching, swelling throat, difficulty breathing, etc.)
angelseven said
Nov 26, 2014
There is another guy that has the aching body thing going on... I have none of that, thank goodness. It is very strange, the sides are so different for everyone... some guys have virtually NO side effects!!!
angelseven said
Nov 26, 2014
I am on Day 8, felt really spaced out first days, that seems to be lessening, headaches are my problem, sleep is better and energy is good.. I hope it stays this way... Day 6 in the morning I had a horrible headache but this situation is improving...I will be happy if things stay this way
Michaele, hydration def. plays a role in the "brightness".
Mugsy, happy your Dad is doing better!
Ro
Hey Mugsy , Glad to hear your dad is doing well.
Im always gulping green tea and water and lately juice . Maybe it is dehydration , but I thought it could be the combo of tea , veg lax and the Harvoni. But I mostly wondered about the Harvoni. Thanks for heads up.... Michaele
Hey Michaele. How you doing? Yes, I have had a few neon orange urines, but I think it was on days I did not drink enough water. Try upping your hydration, maybe?
Thanks for asking about my father. He should be released to the cardiac care rehab place tomorrow. He is amazing!
Mugsy , hope your dad is doing well. I was wondering if anyone has notice their urine becoming bright deep orange on Harvoni,
-- Edited by Michaele on Thursday 11th of December 2014 06:14:40 PM
RE FMLA - I am kind of an expert on it so if anyone needs any help I may be able to help. I actually work for the NYS Dept of Labor and I found that they were implementing the FMLA program incorrectly. After speaking with the Federal Dept of Labor who oversees the program; I got the correct info and "informed" the staff at NYS DOL they were not handling FMLA correctly. They weren't happy but OH Well - it was pretty messed up. But in the process I learned quite a bit. I've been on it for years myself also. With Hep C if I miss some work I don't have to worry about my job. Yes, working for an entity like the NYS Dept of Labor and being protected by a Union makes it hard to get terminated but if they don't like you they can still make your life miserable. Anyway I may be able to help if an employer tries to scare you off from going on it; or if you have any questions.
I owned a small business for a while. I kind of understand. This might be a tough week for you. Take it easy and pamper yourself when you can. I journaled a lot through the worst of it. You may need to take a few steps back now, but try to keep in mind you'll be charging full steam ahead very soon. Fours days before I started treatment, my MIL broke her leg and could not care for herself or her aging husband. I had to step up. I don't know how I got through those first few weeks. But I did.
Take it one day at a time. :) A stronger, healthier you is about to emerge.
-- Edited by Harvoninme on Wednesday 10th of December 2014 09:49:56 PM
Thanks pamelajean , Im really glad to hear this. I started Harvoni on 12/6 . And I feel awful, but its not the Harvoni, Ive felt this was for a month or so before I started. Ive been running a low grade temp QD for past 2 wks , ever since I had a EUS with biopsy on a cyst. So guess Im lucky not to have alot of side effects, but they may be masked by over all yuckiness. Michaele
I work part time for five different companies. I do not think that I am entitled to anything since we don't have benefits. I am covered under my husband's insurance. If I can just get through next week I will be home free as far as having more down time. This is our busiest time of year till xmas. I will try to hold off having to call off work as long as I can for now. Thanks for the advice though
My doctors nurse upset me so much that I drove to work and put about four hours in. It wasn't easy.... nope but I did it to spite her. She acted like I was some wimp. Getting angry actually helped me out the door. Now as the next pill approaches so does my anxiety but I will do it! I must do it!
Hello,
Bill, FMLA stands for "Family and Medical Leave Act". Loco, here is a link to the Dept. of Labor website that explains it and the process. If you need any additional help navigating through the process or anything, let us know. I hope you're feeling a little better!
http://www.dol.gov/whd/fmla/
Tig
I'm not so up to date with all the acronyms I think FMLA means that Family leave or illness time 12 weeks? I did apply for it before I started doing the inciveck triple I was real worried about not having a Job by taking off. It worked very well Of course there is only your sick time and if you qualify for temp disability. But the law is on your side here They can't fire you and have to take you back. If not Law suit. Most employers don't even want to challenge it. And back right off and open the door. i didn't take the full 12 weeks I only used 8 I needed the distraction of work to keep moving.
you may be really surprised on how much your peers and management at work will support you in this ( they are people with families too). I was shocked by their compassion
It all starts with doctor filling out forms think about it peace of mind will also help in you fighting the virus. Best of luck Fourlocos
Hey there, fourlocos. I am on day 18 of Harvoni and yes, it does get better. My nausea, head aches, insomnia, and joint pain are all so much better now. In my case, I think I spent too much time anticipating and looking for side effects in the beginning and I think that wasn't helpful at all. Try to relax a little about it and get outside for a short walk if you can. My fuzziness is still here ( much better, but still here) and I have the opposite problem as far as diarrhea! I also read that Harvoni can cause sinus problems so I started using a saline nasal spray and it actually helps with the headaches and pressure. Plus, the spray can't harm you, except maybe a couple bloody noses, but the relief was worth it. ma snart is right, if you can take a couple days off it might be a good idea. Hang in there, it will get better. And congratulations on starting treatment.
Mary
-- Edited by Mugsy on Wednesday 10th of December 2014 07:20:19 PM
Tig, really so few people actually understand the rules of FMLA, applying for it with documentation can alleviate so many worries about lost days for side effects or simply being drained from fighting the virus, the law requires employees be advised to file for it when there is issues with illness and attendance.
Snart
Snart has provided some excellent suggestions! I also got a lot of relief from the generic Zofran (Odansetron) for nausea/vomiting. It is definitely worth asking for if it continues. We had another member here that utilized FMLA during treatment and it worked out very well for him. It's worth investigating if you decide some extra time off will be required. Do what you have to to finish treatment, it's very important! But you know that! We like to remind you though! Call it friendly needling!
Tig
If you have been employed for over a year at your current job, you should definitely apply for FMLA, you don't have to use all 12 weeks at once, a day here and there and no one can fire you from your job.
My wife Helen had very bad case of nausea for the first week or so, now after two weeks not so much, her doctor prescribed ZOFRAN or generic Ondesetron for the nausea and it helped a great deal.
Snart
Hi FL,
I'm sorry you're having a problem this morning. One of our members on this Tx will drop by and give you some first hand advice soon. I remember you mentioned that you're sensitive to medication anyway, so I'm hoping this is just temporary. We've had others complain about the diarrhea. Can you call your doctor for some advice? There are some OTC medications that will help. In the meantime, oatmeal, toast and tea may help put some substance to it. The first week is always the hardest to get through. Your body is trying to adjust to those powerful medications and it doesn't like it. Hang in there and give yourself time to adjust. If you have a day or two of sick time, I'd use it if possible. Do your best to not let it stress you out already! Give your doctors office a call and describe what you're experiencing. Stay in touch! We're here for you...
Tig
Hello. I started my first pill yesterday with dinner. It has hit me hard. I don't feel good at all and so far can't leave for work. I am feeling too fuzzy headed and hung over to drive a car let alone work. Will this get better over time? I might be the first treatment failure if I can't make it to work. This disorientation feeling has me very anxious which isn't helping. I need more sleep! I normally am up at 5am and at work already. This is scary because I will lose my job if I don't show up. I also had the runs during the night and this morning from it. I wish I had someone to talk to since I am worried I won't be able to leave home.
All cirrhotics will develop portal hypertension. That means increased pressure in the portal venous system. The severity varies widely. The main reason is narrowing of the portal vein branches by fibroblasts ( scar tissue). After SVR, the scar tissue is resorbed, the portal vein branches can dilate and the pressure decreases. This is why cirrhotics won't develop new varices after SVR, and existing varices may shrink. The early changes of portal venous gastropathy can be resolved. Scar tissue in the liver can resolve in many patients. It is still uncertain, but wide bands of scar tissue may not be completely resolved. In up to 80% of cirrhotics, liver cell regeneration occurs, and liver failure becomes unlikely. The risk of HCC remains but is significantly less. So overall, cirrhotics can reasonably expect a normal life span after SVR.
Prayers go out to you and your family while you deal with this Mary!
Gob Bless and good luck.
Mugsy, your dad sounds absolutely amazing for an 83 year old! Really pleased to hear how well he`s doing, and he obviously has all his mental faculties intact to react so quickly when he realised he needed medical assistance. Great to hear that, thanks for giving us the details, I didn`t like to ask too much.
Best of luck, good to see so many of you getting on with your Harvoni treatment!
Mugsy , Glad to hear your dad is doing better. We are all praying for your family.
Im not feeling more tired . And I found that sometimes when I feel to sick to get up and do something , I get that small window of time when I feel pretty good . Then I jump up and run out the door and get on with life. It usually makes me feel better; until I get back home and settle in. Then it all catches up with me.
Last night my son was cooking, who knows what and the smell whaffed up into my room. I thought I was going to hurl. He did it twice. And when I got up this morning the downstairs of my house looked like there had been a frat party. Have a Good One MIchaele
Thank you all for your kind words and prayers. He is doing amazingly well for an 83 year old. He drove an hour home after Thanksgiving feeling poorly, turned around and drove himself to the ER. They ambulanced him back to Boise and he was talking and using his phone and his vitals were just fine during the hour drive. Got checked into his hospital room and was talking to his cardiologist and had a massive heart attack right in front of him! He was essentially dead and they brought him back from the Widow Maker. He's out of the ICU and the prognosis is very good. He's a tough old bird.
Michaele, I had to laugh as I was reading your report and I'd felt the same way about the diarrhea, but nope....I'd rather those icky HCV bugs would exit my body a little quicker than they are. Someone had mentioned how their headaches felt like sinus headaches so I tried using a saline nasal spray and it seems to relieve the pressure in my head. I find I am tired a lot recently, but I am sure it is related to life, not HCV. Had my 2 week blood draw today and I am anxiously awaiting the results.
Thanks again for your support. You guys are awesome.
Mary
Mugsy,
Sending out prayers and positive thoughts to you and your family! Hope your Dad is improving!
Take care of yourself!
Ro
Oh Mugsy, I`m so sorry to read that your dad has had a heart attack, I`ll keep you and your family in my thoughts. I don`t want to intrude but you know we`re all here for you.
Hoping and wishing for the best. Hugs, Jill x
Mugsy , Sorry about your dad . Hope you are handling the stress on your own terms. I'll say a prayer for your family.
Im on dose 3 and feel like I usually do: lousey. But the good part is I cant blame it on the Harvoni , as I have migaines, so Im nauseous and have a headache all the time anyway. I have been an insomnic since childhood so Im used to not sleeping. I read it can cause diarrhea , now there is a side effect I could benefit from. I could same money on all the stool softeners and veg laxatives that are not working. Actually, being rid of the stress of anxiety caused by the off and on again has made my mind feel clearer than in yrs.
God Bless You Mary........ Michaele
Hi Mary (Mugsy),
I just saw your sad news regarding your Father suffering from that heart attack. I'm so sorry to hear that terrible news and wanted to check on both of you. I pray he is doing well and will hold you both in my thoughts and prayers. Let us know if we can help and please keep us informed on his condition. My best to him and your family!
Tig
Other than slight headache, I noticed less pressure almost immediately. I have a very good appetite also.
Michaele I am so sorry I haven't been around to cheer you on. After I was sure I wasn't infectious from the GI bug, I had to fly to Idaho because my father had a massive heart attack and I just got home today.
Yes, I could feel less pressure within the first couple days. It has now been two weeks of Harvoni and I get my metabolic panel tomorrow. My headaches are gone and the nausea is nearly gone, too. I still feel a bit foggy, a little insomnia and I don't always follow conversations, but that could be due to being tired and stressed. But I do feel good!!
How are you doing? It is going to take me a while to read through all the postings since Dec 2 so if the answer is in there somewhere, I'll get to it.......after I sleep for 12 hours! Hope you are doing fantastic!
Mary
Mugsy, Im waiting for Fed X as I play catch up reading posts, Does your liver really feel less inflammed? Wonder what, if anything it does for the portal hypertension . Michaele
Thanks for the update, Mena. It's a blessing he's cruising through this with no sides. Because I have been noticing more SEs & symptoms through my Harvoni TX, I've been reading every thread I can find on the subject. Some people simply have no side effects they feel are worth mentioning. Among other SEs, I've had a decrease in appetite. I was hungry in week 3, but have lost 14lbs since starting treatment on Oct 31st. In my case, I'm not complaining about the weight loss, just sharing. ;)
Wishing your husband a speedy, mellow treatment!
My husband Angelo has been on Harvoni since November 24th. He is scheduled for his first Blood test ( 2 weeks after starting)
This is what it says on the script:
HEP C VIRUS (HCV RNA), QUANT, REAL _TIME PCR
Check HVC viral count at 2 weeks and 4 weeks after starting HARVONI
So far his Side effects are basically NONE, except for one.... HE IS ALWAYS HUNGRY! Is this happening to anyone else on Harvoni? Other than that it's almost as if he's taking a sugar pill. Compared to his previous treatement , this time around it's really a "miracle" that he is doing so well!
Mena
I'm sure all my kisses and hugs were what infected me!! Can't help myself. Thanks for your kind words.
And Isiscat, you made me laugh! I am glad you opened your big mouth. And I'm sure my husband thanks you, too. My riba rages would not have been pretty. I'll gladly be your bunny.
Hi Mugsy:
Don't you dare feel guilty. You need tx right now and everyone else will get theirs too. I can't tell you how happy I was to see that you got tx. I had actually been feeling a little guilty for suggesting that you consider waiting for the all orals when you first came here. I thought, "If Mugsy doesn't get DAA tx right away, I'm going to feel terrible for opening my big mouth." Thank goodness you have. Matt, Beacon, Michaele, and I, and many others are right behind you. You are doing us a favor by being the test bunny who can tell us how things are going so far.
-- Edited by Isiscat2011 on Monday 1st of December 2014 02:39:52 AM
Don't feel guilty Mugsy, you're one of the lucky ones! This will get straightened out eventually and when it does we'll need treatment experienced veterans to continue on with support and information for those starting. This same thing has happened to many people using different protocols along the way. Someone has to be first and fortunately you are it!!
I'm very sorry your sweet lil cesspool infected all of you! Gotta love em! Hope you're feeling better. Good luck on your upcoming tests!
Tig
Well, it is day #8 of Harvoni. Things were going great until Thanksgiving and my adorable little cesspool of a grandson passed a wicked stomach bug to us all! We thought it was food poisoning because we were out of town and had ordered dinner from the local deli, but when people got home, they passed it on to others who didn't eat our food. I was so afraid I'd upchuck my golden pill I just kept saying don't puke or you'll have to dig for it and retake it! Sorry for the TMI but other than the slight headache, spaciness, and a little stiffness in my joints, I seem to be tolerating the meds just fine. My first blood test is scheduled for Dec.8th and first viral load will be Dec.22nd.
I will admit to feeling guilty when so many of you cannot get the medicine you need and deserve.
And yes, I have forgiven my germy little grandson.
the first 6 days were the worst for me with harvoni... bad headaches, worse on day 6, after that things started leveling out with the headaches and spacy feeling.. I take at 6:30 am, sleep has been really good the whole time and i have more energy...very cheerful... on Day 10
Beacon,I hope you get your hands on those pills soon. As far as when to dose, night dosing works for ME and I would never attempt to tell anyone else when they should. It seems to work for me, but we all have different lifestyles and schedules and need to do what we or our doctors feel we need to do. My hepatologist fully supports my choice to night dose. I just want us who need it so badly to receive the medicine soon, now, today! But dealing with several different companies and doctors makes things tough. Hang in there.
Can't wait to hear you tell us you are onboard the Harvoni train.
Mugsy
Mugsy,
I'm F4 with cirrhosis and not in a fight for treatment yet and hope it doesn't get to be down and dirty.
I just saw the specialist doc who sent me for lab work the same day. So you know the routine she needs those
back before she can do the prior authorization. It would seem to be a bit of a dilemma about when to take
your medication...morning, evening, or night. Different people would be faced with different situations
due to personal circumstances such as work. Night would work as long as there is no insomnia and maybe
since the body seems to heal at night then maybe night would give the Harvoni time to do its' job with no
interference since all systems are kind of dormant and in shutdown mode. At night I could take meds at the
same time, but I'm up at 4am week days for work but on the weekends I don't wake up that early so I
would have to set the alarm for weekends. And once you choose one or the other it might not be good
to suddenly switch dosing schedules 12 hours or so. Ok I'm ahead of myself. But first let me get my hands
on those Harvoni pills and then....decisions....decisions....
I'm taking mine in the mornings. Within 1-2 hours I feel a flush, sometimes chills. For me, beyond general fatigue, the other SEs come and go... here I am up early again because of SEs (cramps & sweats).
I'm reluctant to change my pill time at this point. Once it builds up in the body, it may not matter much.
Trip wrote:
I would disagree, for me i think day time dosing is better. The medication is probably at its strongest during the first hours after taking it which might potentially disrupt sleep patterns.
Thanks, Mugsy. I'm sold on the night dosing. Wow, I can't wait to feel my liver get smaller.
Oh Isiscat, I am not the one to give recommendations to others, especially after only 4 days but night dosing seems to be working for me. I have had the best sleep the last couple nights haven't had the usual hard time falling asleep and have only awakened a couple times and then went right back to sleep.I do not think I have side effects aside from morning headaches that go away with coffee and a little stiffness in my neck(maybe from sleeping so deeply?) But I must confess I was skeptical when people were saying they felt their livers had reduced in size very quickly...well, it is true for me, too. I can sleep on my stomach comfortably and bending over to beach comb doesn't feel like I am squishing everything inside. I do have to remind myself to drink more water. And I seem to be a little spacey, too.
Again, I am just a couple days into this, but I think night dosing works for me. Can't wait to hear that you Michaele and Matt have started, too. Are there any more F/3-F/4s still fighting for treatment still?
Happy Thanksgiving to you all.
-- Edited by Mugsy on Thursday 27th of November 2014 10:35:12 AM
I know! sighs. lol Time's flying, thankfully.
angelseven wrote: "what side effects does it list??"
Tiredness, headache, nausea, diarrhea and difficulty sleeping. Then it lists basic allergic reactions to all drugs (itching, swelling throat, difficulty breathing, etc.)
There is another guy that has the aching body thing going on... I have none of that, thank goodness. It is very strange, the sides are so different for everyone... some guys have virtually NO side effects!!!
I am on Day 8, felt really spaced out first days, that seems to be lessening, headaches are my problem, sleep is better and energy is good.. I hope it stays this way... Day 6 in the morning I had a horrible headache but this situation is improving...I will be happy if things stay this way
what side effects does it list??