Author Topic: Starting Solvadi + Riba this week (Read 10433 times)

etgal · « **on:** November 17, 2015, 11:28:30 am »

Hello. I've been hanging out here for a little while, but 1 st post. I opted to pass on peg+riba in 2008 and honestly would rather skip the riba, but I am just worn out waiting. I just turned 57, pretty healthy, need to lose 20 -25 lbs. I have a wonderful NP advocating for me and got the RX denials done and meds on there way this week. I am seriously anxious (a condition I fight with every once in a while with ativan) but counting my blessings as I have read many folks just can't get the meds.

Anyway, just wanted to say hello. I will be the newest resident, I'll try to not be too whiny or needy.

etgal · « **Reply #1 on:** November 17, 2015, 12:38:01 pm »

Also, I work in a small office and haven't / won't discuss my HCV. Any suggestions for what might ail me so I don't become the office topic. Thanks

beto · « **Reply #2 on:** November 17, 2015, 01:36:49 pm »

etgal,

A big welcome to you and "whine" all you want but, perhaps not "wine" for a while..teehee

yes unfortunate that so many are unable to get the meds. I am assuming since you skipped the Peg, you are treatment naive, which improves your chances (which are excellent by the way)

The small office and the Hep C stigma. I feel ya. If the cats out of the bag, just play it down. The other thing to do is to make sure everyone is educated. If anything, folks should be sensitive to your predicament. Then there is the old, if it's hep C you are an IV drug user. So whether you contracted it through a transfusion or, you made a few bad choices in the past (who hasn't) you are sort of lumped into that category by the ignorant few.

It does not matter how we got here we all deserve compassion and you will get plenty of that right here. Avoid the places where you do not get it.

Hep C is curable and everyone need to stop fearing it. You are going to get rid of it probably in the 1st 2 weeks of Tx.

Hang out with us, it's therapeutic...peace

MaryC · « **Reply #3 on:** November 17, 2015, 06:37:22 pm »

Welcome etgal,
So glad to hear you are starting your recovery journey!

I loved beto's response...not much to add as he said it so well. You don't owe an explanation to anyone in your office or personal life. But if you feel a need to open up, you might start with a small group of close associates. I was embarrassed/ashamed/reluctant to tell others of my medical status - esp at work. I had a couple of close friends who are fantastic friends, but I even had trouble confiding in them initially. I have subsequently 'come out' so to speak and I am pretty open. It feels freeing to me. It has also provided the opportunity for me to educate others about this disease and break down the stigma a bit. Since I spent much of my career as a nurse working in the mental health field, I am well aware of how stigma can drag folks down. But also the value of education to attack negative perceptions and stigma head on.

Good luck to you. Looking forward to see some updates as your treatment progresses.

Mary

etgal · « **Reply #4 on:** November 17, 2015, 07:10:24 pm »

Thanks Beto & Mary. I've been hanging out here a while so I feel like I know you as friends. I am very excited, as well as, seriously anxious. It's been a long 8 years of living with this dragon and keeping it to myself, except my dear husband. On one hand I would like to be an advocate, but on the other I work with some pretty small minded people. I know from experience it would be best if I didn't talk about my health issues. They love (LOVE) drama and gossip. Sad, but I just tend to my business and ignore their crap.

Doctor's office confirmed I should receive my meds on Thur, so it begins for me.

Philadelphia · « **Reply #5 on:** November 18, 2015, 05:55:39 am »

Auto immune disorder if you need to use anything. There are so many and you can just say the name is so complicated you can't remember it!
And welcome

etgal · « **Reply #6 on:** November 18, 2015, 08:13:29 am »

Thanks so much Grace. I started reading your blog, you have a great talent for writing. I am enjoying it, thanks for providing your trek.

JAF · « **Reply #7 on:** November 18, 2015, 11:52:44 am »

Etgal. We're in the same boat. I'm GT2b and I just finished my 5th week of Sovaldi and ribas. Everyone handles the meds differently. Besides a bad migraine during the first week and slight nausea on the 3rd day, the only side effects I have are fatigue and riba rage. As bad as they can get some days, they are never constant. I can go 2 or 3 days feeling awesome, then want to rage over the most insignificant matter. There are times I can do everything and times when I don't want to leave my room. However, for the last 2 years I was having a multitude of what seemed like unrelated issues. I was put on meds for anxiety, had back pain which they attributed to severe arthritis of the spine and I was diagnosed with an irregular heart beat called long QT syndrome. After my doctor ruled out all these other causes he told me I could no longer ignore my HCV status. He recommended a hepatic specialist and in 2 weeks I knew my GT, VL and course of treatment. 2 weeks after that I was approved for the meds. I have to tell you, when I'm not experiencing the sides of the meds, I am feel healthier and stronger than I have in years. Tomorrow I start week 6 - almost half way through treatment! The first 5 have been much easier than I ever expected.

I understand your reluctance to disclose your status. I didn't until now. But when i found out there are millions of people living with this disease, a large number of them unaware, and the fact that so many are still unsure how they've been infected, it changed my way of thinking. Baby boomers are the largest group sick today and the fact that they suggest anyone born between 1945-1965 be tested, goes to show it's no one's fault and it definitely doesn't matter how you got here. Everyone survives this in the way that works best for them. I stayed silent while my kids were younger but now that they are adults I try to educate as many people as possible.

I should be posting again later today. I'm waiting for the results of my 4 week labs. We are all in this together and there are great people here with loads of info. It's helped me so much.
Good luck on your journey!!!

etgal · « **Reply #8 on:** November 18, 2015, 12:38:20 pm »

Thanks, JAF, i'll be watching your journey to being Undetected

Rubi · « **Reply #9 on:** November 20, 2015, 04:07:28 pm »

I am in week 7 of twelve of sovaldi/Ribavirin. The first couple of weeks were tolerable and I had more good days than bad. Then it switched and now I have no good days. But I do occasionally have good moments. They don't last long so I usually pick one area of my house that is very neglected and clean it before that little burst of energy disappears.
While my days are difficult my numbers are looking good and that keeps me focused on the end result.

I look forward to getting to know you all.

etgal · « **Reply #10 on:** November 23, 2015, 02:54:57 pm »

Hello all. Day 4 in progress. I am taking the sovaldi at about 5. am without food, 2 riba with breakfast. 3 riba with dinner around 5:30 pm. Day one and two had brain fog until lunch. Day three, ate a small breakfast and late lunch which I ate way too much. Paid for it with extreme nausea and vomiting all afternoon. Finally got to feeling well enough for the evening riba then off to bed. Slept well and woke feeling okay. No side effects today, so hoping it will last through the holiday weekend.

BillT · « **Reply #11 on:** November 23, 2015, 09:03:06 pm »

Hi Etgal and welcome to the dance floor,
As has been said the sx's are different with everyone.If the riba's start messing with your sleep you can always start taking them earlier in the afternoon.I'll let those taking them fill in the blanks for you.I wouldn't worry about the people at work much unless it really starts taking a toll on you.If that happens the only one that needs to know will be your boss.If you're anything like Cal with the riba's I wouldn't worry about it at all.There might now be much of a office left in a few weeks.

TexasC+ · « **Reply #12 on:** November 24, 2015, 06:43:17 pm »

Welcome to the riba/sov party!! Water is the beverage of choice during the 12 or 24 week happy hour.
Everyone has sides of some kind. Sleep interuption and lack of sleep were my most challenging. The second dose was my headache dose most days. I stayed busy, worked hard and counted down the days.
I focused on something good every day. I stuck to my guns that I would filter out any negative or riba rage moment out of my work day. When I got home I worked with plants and if I wanted to throw something outside or yell I sure as heck did lol. Good think I live in the country .
I finished my 24 weeks 11/14/15. My last week I was pretty worn out from working 7 days a week though the whole treatment. My company let me work from home the last few days and sent me flowers. I did tell them my status, as I am a nurse and I would have had some restrictions while I was positive and God forbid something happened to me I did not want them to risk becoming infected.
You can do this and you can be one of the ones CURED. I get labs in 3 months and at 6 months.

JAF · « **Reply #13 on:** November 24, 2015, 07:01:41 pm »

Etgal - I just wanted to give you some encouraging news. I had my 4 week labs done on 11-14 and just got the news I'm undetectable. My ALT is 17 and my AST is 19. I finish week 6 tomorrow and so far nothing major is happening as far as sxs. The doctor is still looking over my labs to check RBC and liver function but he told his assistant to call me so I can enjoy my thanksgiving. He said he doesn't see anything that looks like a problem. I have a visit on 12-7 so I'll know more then.

Rubi - I had a pretty easy time with TX the first few weeks and kept thinking the more it stores up in my body the worse it would get. But like I said, I finish week 6 tomorrow and besides my bouts of riba rage I've been lucky. I did notice that this past week I've been busy moving and I wasn't sitting around waiting to feel every little ache. It went by so fast and I had to set alarms to remind me to take my meds. Hope you're feeling better soon. Listen to TexasC. Water helps so much.

Half way through treatment and undetectable! So much to be thankful for!

etgal · « **Reply #14 on:** November 26, 2015, 06:15:32 am »

Thanks Bill and TexasC. Excellent news JAF.

Rubi · « **Reply #15 on:** November 29, 2015, 10:17:53 am »

I am finishing week 9 of 12 week treatment. While I have some pretty severe side effects I'm hanging in there.

I have told the people closest to me but for others I just say I've been really sick and am undergoing treatment and I am expecting good results at my post treatment checkup. I explain that I am not broadcasting this news and I would simply appreciate prayers and well wishes.

KimInTheForest · « **Reply #16 on:** November 29, 2015, 10:52:49 am »

Good luck to both of you, Rubi & etgal! You are each on your way to being cured! Side effects are burdensome but temporary. Your future life without HCV will be permanent.

kim

etgal · « **Reply #17 on:** December 02, 2015, 03:31:02 pm »

Just an update. I know it's early yet, but my sx have been minimal and every day is new. So far: heartburn becoming more frequent. Some heart pounding on a few nights- wakes me up and 1/2 of an ativan stops it. I was prescribed ativan for this very thing, dx as anxiety attacks. I have the insane itchy, crawly skin last 6 nights, tried benedryl but doesn't help, it just sort of passes to now the Riba dry cough.
So, all sx happen when I need rest. I am hoping my body adjusts and these don't get worse.
I hate meds and have always avoided them as I generally have worse reactions than they help.
Again, these come and go and aren't worth much more than me just whining.

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Author Topic: Starting Solvadi + Riba this week (Read 10433 times)