Author Topic: Scared and about to stary 24 weeks ribo and sovoldi monday (Read 14875 times)

TexasC+ · « **on:** May 29, 2015, 11:29:27 pm »

Insurance is making this more difficult to be, then it needs to be. Approvals are for 6 weeks at a time. viral load every 4 weeks, doc has to submit the viral load and another preauthorization each time. Will be doing 24 weeks of ribo and solvoldi.
Side effects scare me but, I am happy to get started on treatment,
Any tips on how to take it, eat with it, tricks/tips for dealing with side effects.
Any thing you can share will help.
My shipment should be at my doctors office Monday. I am taking Tuesday off just to chill and get a day overwith without the pressures of work,
Thanks
Mary

KimInTheForest · « **Reply #1 on:** May 30, 2015, 01:05:32 am »

Hi Mary. And welcome to the journey!

I gave you a longish reply over on the C+ thread:

http://forums.hepmag.com/index.php?topic=2675.msg22584#msg22584

kim

Downnout · « **Reply #2 on:** July 02, 2015, 02:47:55 pm »

Hi everyone, I've had Hep-C since my tour in Vietnam. Found out I had it in the '90's. I was exposed to a lot of blood while there. Course no one knew about this disease back then and that you needed to be protected from blood born diseases.

Anyway.... I've looked on this site but have found no threads about patients who have already had a liver transplant and fixing to stat the meds. I've had my transplant for almost 4 years now, and have just now finally.... got the VA to give me Solvadi and Ribavirin. I'm told, because I have type 2 Hep-C this is what I must take. I've been prescribed 2 Riba in the morning with food as well as 2 in the evening with food. Also prescribed 1 Sovaldi in the morning. I've read all the side effects and I too, am nervous about all these side effects.

Having had the transplant, I'm on several immunosupressive drugs that being cyclosporin and mycofinic acid sp? or Myfortic is another name for it.

I'm wondering about two things.... Should my immuno's be somewhat lessened and the other thing is.... I haven't seen any other post of other people that have already had a transplant and starting these new Hep-C drugs and what their experiences have been.

Anyone know of others who are in this situation. I'm starting it this Sunday 06-06-15 and dreading it.

rainbowray · « **Reply #3 on:** July 02, 2015, 05:29:41 pm »

Hi Texas C+
I completed 24 weeks of sovaldi/ribavirin Around 8 months ago. I am genotype 1B and have tested no virial load. The treatment is a rough one and I am still having effects. It lingers for awhile. You should not have major issues till around the 10th to 12th week.
I know a girl who weighed about 105lbs and was given the full dose of 1200mg a day with the sovaldi, after 3 weeks she went off-line and has not posted for about 3 months. They gave her too much. If you weigh from 100-125lb you shoud get a lower dose. Toward the end, I was in dire straights at work with the fatigue and I lowered the dose on my own and felt better, and able to keep going to work. I still am undetected, so the ribavirin builds so much in the system, I did not have a problem believing lowering the dose was going to have any effect. You are gen 3 so I don't have the same "solution" for you if the going gets rough, as 1B has better outcome. Drink alot of water and get rest all during the treatment. Your going to itch like crazy, I still am getting itchy issues, not as bad though. Keep an eye on the blood work, watching for anemia.

Downnout · « **Reply #4 on:** July 02, 2015, 06:09:49 pm »

i don't know or understand the types. All I know is I have type 2. I suppose if I re-read my lab work it might have a B or something.

I weigh 217 and they've prescribed 200 mg 4 times a day for the Riba and 1/400 Solvadi a day. The VA let me go so far with cirrosis I got cancer and almost died. Did they tell me I had cancer....? NOPE!

Only way I discovered it was, I felt "The Good Lord," told me to get a copy of my records from about a year and a half before and there it was in black and white.
Heptocelluarcarcinoma! Been trying to get them (the VA)to give me the meds for the Hep-C from them but I had to go outside to a Dr. and he wrote the script for it which kind of forced them to give it to me.

KimInTheForest · « **Reply #5 on:** July 02, 2015, 07:05:22 pm »

Quote from: Downnout on July 02, 2015, 06:09:49 pm

I weigh 217 and they've prescribed 200 mg 4 times a day for the Riba and 1/400 Solvadi a day.

Hi Downnout. Welcome to the forums! The amount of Ribavirin they are giving you (800 mg/day) is very low for anyone, and is certainly low for a weight of 217. 1,200 mg/day would be the norm recommended in all the literature and by the manufacturer for your weight. So unless there is a reason why your doctor is starting you on a sub-normal dose, you might want to see if you can get him to prescribe you the full/correct amount for your weight. Perhaps he is giving you lower than normal Riba because of your immuno-suppressant drugs because of your transplant. I don't know. The doctor may indeed have his reasons. But if it were me, I would want to know exactly what that reason is. Sometimes doctors just make mistakes and don't know the new rules for the new all-oral drug regimes.

I am on Week 9 of Harvoni+ Riba. (I am getting 1,000 mg/day of Riba and I weigh 120 lbs.) I have not had any real problems, although apparently my hemoglobin has just dropped below a desirable level (it is now at 9.8 ). That is a Riba effect. So they are going to monitor me more closely for a while, more frequent blood draws to keep track of my hemoglobin level.

Best of luck to you Downnout!

kim

Downnout · « **Reply #6 on:** July 03, 2015, 09:22:59 pm »

hey Kim,

Thanks for responding. I'm having problems with my creatine and my hemotocrit. Both barely out of the range to the bad side. Many who've been through a trans begin to have problems with their kidneys. Some.... actually have to have a kidney transplant after around five years. Course you never know the whole story.... whether they take their meds right or maybe they're being prescribed too much immuno.. Never had time to talk to them very much. Notice i said some..... I've only met one but have read of others.

My Doc has a Hep-c team and they've been at it for awhile so I trust them. They did mention they might contact my transplant team to see about lowering my immunos but haven't heard anything yet.

Sounds like you're knowledgeable on the subject so I'll post my 2 week blood test. I'm already having weakness when I get in the sun which seems to go away inside.
I canactually ride an exercise bike and no leg weakness at all. They're checking my thyroid to see if I need to increase my levothyroxine.
Take care..

KimInTheForest · « **Reply #7 on:** July 03, 2015, 09:54:14 pm »

Hi Downnout. Yes, do post your 2-week blood test when you have your results. I don't know how knowledgable I am. But there are lots of knowledgable people on these forums - especially the moderators. We are all learning as we go and all becoming "mini-experts" in the process.

Re: Sun & ribarvirin - I have seen a number of people here mention having skin problems with sun exposure while on Ribavirin, mainly a rash or reddening. That has not been a problem for me. I am getting sun every day. I have not noticed too much mention of fatigue associated with sun. But it is all possible. These drugs do seem to affect everyone's body a little bit differently. And fatigue is certainly part of the Ribavirin equation due to the eventual lowering of hemoglobin that the Riba causes.

good luck!

kim

Downnout · « **Reply #8 on:** July 03, 2015, 11:02:56 pm »

If I can figure out what numbers to post I will... Going to be interesting for I STILL.. haven't found anyone that's on treatment and has already been transpanted. Even Gilead sciences told me they haven't got any documentation on a transplanted patient......

KimInTheForest · « **Reply #9 on:** July 03, 2015, 11:25:12 pm »

Quote from: Downnout on July 03, 2015, 11:02:56 pm

If I can figure out what numbers to post I will... Going to be interesting for I STILL.. haven't found anyone that's on treatment and has already been transpanted. Even Gilead sciences told me they haven't got any documentation on a transplanted patient......

For sure, yours is an interesting an unusual case. I have not seen your situation (of being treated with the new drugs post-transplant) mentioned by anyone else here on these forums in the short time I have been here. I certainly hope it goes well for you!

kim

Downnout · « **Reply #10 on:** July 04, 2015, 06:01:05 pm »

Thanks Kim,

Maybe someone will read one of my post about my starting on Riba and Sol; post transplant and respond. "IT WAS'"......quite unusual that Gilead Sciences said they'd not treated anyone in a trial on a post transplanted patient! I haven't contacted Abbivie since I'm getting the above meds.... maybe I should. I need to find their number...

I read on HepCcentral.org of something like that about 6 months ago where they'd come up with a cure. It was listed by a number rather than than name. They later pulled it because of some kind of requirements of the FDA.

I get regular emails from that hepc site... It's pretty good about info. I'm sorry I can't remember the correct name of the site at the present.

KimInTheForest · « **Reply #11 on:** July 04, 2015, 06:23:21 pm »

Here is something for you Downnout:
http://www.gilead.com/news/press-releases/2014/4/gileads-sovaldi-demonstrates-efficacy-and-safety-among-chronic-hepatitis-c-patients-with-advanced-liver-disease

From the article: "Study GS-US-334-0126 (Poster #1232), was a single-arm open-label Phase 2 trial in which patients with established recurrent HCV infection following liver transplantation received up to 24 weeks of therapy with Sovaldi plus RBV (escalating doses starting at 400 mg/day). The majority of patients had genotype 1-HCV infection (n=33/40) and 88 percent (n=35/40) were treatment-experienced."

"Seventy percent (n=28/40) of patients in this study achieved SVR12. The most common adverse events occurring in more than 20 percent of patients were fatigue, headache, arthralgia (joint pain) and diarrhea. There were no deaths, graft losses or episodes of organ rejection among post-liver transplantation patients, and no drug-drug interactions were reported between Sovaldi and immunosuppressive agents."

Downnout · « **Reply #12 on:** July 05, 2015, 01:19:29 am »

Hmmmm.... Funny that the nurse said exactly the opposite.

Thanks for digging that info up KIM! If I understand what i read.. It sounds promising... We'll see... It may be like you or someone said.. They're starting me off on a lower dose but I got enough meds for 28 days with two refills. They told me it should show the virus "Gone" at the two week blood test prayerfully,but I must continue for 2 more months after that. I guess to make sure there's none hidding anywhere...!

Try to let you know how I feel tonight.... Since it's after midnight now...LOL!

KimInTheForest · « **Reply #13 on:** July 05, 2015, 02:40:24 am »

Yes it does sound promising, Downnout - especially the part about it not interfering with the transplant or the immunosuppressant drugs. And yes, I guess that is why they are giving you a lower than normal dose of ribavirin. But that lower dose will be nice for you in other ways. You probably won't get the anemia that I now have (for another 3 weeks).

best,
kim

Downnout · « **Reply #14 on:** July 06, 2015, 01:05:57 am »

Just found this in an email from Hepatitus Central... Kind of interesting... Started my regimine today. I've only noticed a slight headache.

Antihistamine Study
In search of a more cost-effective way to defeat Hepatitis C, researchers at the National Institutes of Health in Bethesda, MD screened 3,800 drugs already FDA-approved that might have an antiviral activity against Hepatitis C infection. As published in an April 2015 edition of the journal Science Translational Medicine, human liver cells were grafted into mice to test the allergy drug chlorcyclizine HCl.

An over-the-counter antihistamine, chlorcyclizine HCl costs about $17 for 30 pills under the brand name Ahist. The research team found that chlorcyclizine HCl was a potent inhibitor of Hepatitis C infection in human liver cancer cells and human liver cells.

Although traditionally used to treat hay fever, chlorcyclizine HCl also appears to inhibit an early stage of Hepatitis C – most likely by targeting viral entry into host cells. In addition, chlorcyclizine HCl was found to be synergistic with other antiviral drugs used for Hepatitis C, such as ribavirin, interferon, telaprevir, boceprevir, sofosbuvir and daclatasvir.

The authors of the study make an interesting case for further investigation into chlorcyclizine HCl as part of Hepatitis C treatment. They claim this allergy drug (that is already FDA-approved and has a favorable safety profile) could provide a more affordable alternative to the costly Hepatitis C treatments now offered.

Downnout · « **Reply #15 on:** July 06, 2015, 01:11:50 am »

Hepatitis Centrals' website is:

hepatitscentral.com

Anyone can sign up for their newsletter... They provide a lot of info on trials and stuff...

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Author Topic: Scared and about to stary 24 weeks ribo and sovoldi monday (Read 14875 times)