Author Topic: new to forum/ solvadi/ribopak/pegasy approved (Read 56278 times)

beano · « **on:** August 29, 2014, 10:45:11 am »

Hi everyone. went on Humana site this morning and seen they approved the 3 meds, now i'm waiting for the call from the doctor to start treatment and I'm nervous as hell. I was really hoping to be able to skip the feron shot but doctor said I needed all 3.
I've been with hepc for 45 years (65 yrs old), I haven't seen the new blood work results but 2 years ago I was gen1. My question is does the shot hurt, burn etc? and will my mood change? (I am not a depressed person at all)

Mike · « **Reply #1 on:** August 29, 2014, 11:44:38 am »

Hi Beano,

I completed the same treatment in April. As far as the Interferon shot, it doesn't burn when you inject it. I injected in the upper thighs with no problem.

Interferon can make you tired and cause flu like symptoms for a few days after the injection. I did my on Friday nights so it wouldn't interfere with work.

Interferon effects people differently and some have no issues with it. It can cause a little depression (at least for me) and I started taking Paxil a week before I started treatment.

I did 48 week s of Interferon in 2001 and that was not much fun.

The 12 week course went by very quickly and I didn't have any issues.

The treatment worked for me and I'm now cured.

Make sure you drink plenty of water, as this really helps with the side effects(and I mean lots of water).

Let me know if you have any questions.

Best wishes, Mike

lporterrn · « **Reply #2 on:** September 02, 2014, 10:12:32 am »

Hi Beano.
The shots don't usually hurt. Be sure to let the alcohol on your skin evaporate before you inject - that is what causes the slight stinging. Just fan the area with a piece a paper (don't blow on it - that will blow your germs on to it).

You may have mood changes. The ribavirin agitation starts in a few weeks and increases gradually. The interferon is also gradual, and starts to really kick in around 12 weeks, but then you'll be done.

Wishing you a successful treatment journey with gentle side effects and a hep C-free future.

beano · « **Reply #3 on:** September 03, 2014, 08:54:46 am »

Thanks Mike and Iporterrn
Rats! I just received a letter yesterday from Insurance co. stating I was approved for 30 days only! Reason given, I'm within 90 days into my plan and I should talk to doctor about changing drugs or request an exception.

So I called the nurse about letter and she said this is normal and they've already sent letter to who ever it is they send it to and it will be about 6 weeks before they receive an answer from Humana.

Later on in the evening I received a call from TLC RX (who the doctor is using for Pharmacy and I don't think their in my network) They're aware of everything that's going on and I should be approved within 2 weeks and meds will be fed ex to me from them or who ever Humana chooses. If I don't here from them, call them back in 2 weeks. They were Very nice and seemed confident all will turn out good.

Insurance letter says call If I have any questions but I'm afraid to, worry I'll screw up what ever is being done by doctor. What a BUMMER!

lporterrn · « **Reply #4 on:** September 03, 2014, 09:11:20 am »

Frustrating, but it looks like you are getting closer.

Mike · « **Reply #5 on:** September 03, 2014, 11:45:17 am »

Hi beano,

I would call the insurance company and tell them to deliver the first 30 days. You can store these meds for up to a year if you have to. That way you have 1/3 of the meds you need and can start when the other two shipments are approved. I don't think the insurance company will let $35,000.00 worth of meds go unused, which is what will happen if the other 60 days aren't approved.

That's how I'd handled it.

Best wishes, Mike

beano · « **Reply #6 on:** September 12, 2014, 07:06:40 am »

Hi Mike and Iporterron

Monday evening I called the pharmacy to have them send the one month supply, was told they couldn't because insurance sent one of the drug's (pegasy) fax ok's to doctor in New York who's now my doctor in Florida.(smells funny?)
she tells me insurance co was not returning calls for days on getting fax # correct and when they do they now want more blood work, ( 6 vials) before they'll ok the other months.

So Tuesday morning I called Doctors office and ask why no one has called me about the new blood work needed? Nurse called me back with which lab to use, to which I said, by the time this is approved New drugs will be out and pegasy may be obsolete! she said nothing new on the way to replace pegasy and not to worry and assured me I will get the 12 weeks approved.

Since some of the blood work results takes a week I'm back in limbo again. Do you think I should call Humana and ask them why the hoops and about the 1 month that is approved?

lporterrn · « **Reply #7 on:** September 12, 2014, 05:46:25 pm »

Beano,
I think Mike is better at this sort of question than I am, but in my opinion, the new treatment which is expected to come out in October will be a vast improvement over this one. Perhaps this is a blessing in disguise (albeit a very frustrating one!)

Mike · « **Reply #8 on:** September 12, 2014, 06:20:53 pm »

Hi Beano,

What a hassle. I would probably have the blood work done, as the insurance company will most likely ask for this with any of the new treatments coming out.

I would also ask Humana about this (the hold up) and what exact blood work they are looking for. The more info you have - the better.

Best wishes, Mike

beano · « **Reply #9 on:** September 12, 2014, 06:59:37 pm »

Thanks Mike

I Did the blood work, she drew a extra vile just in case they forgot something.

Glad you think I should call them about hold up and extra blood work. I'll let you know what happens. Maybe I should tell them i'm borderline for the 24 week course if I don't start it soon/ jk

Mike · « **Reply #10 on:** September 12, 2014, 07:04:35 pm »

Let me know what they say,

Mike

beano · « **Reply #11 on:** September 15, 2014, 02:59:48 pm »

Hi Mike

I called insurance co. 20 minutes with one girl who couldn't figure it out, transferred me to claims who said the case was CLOSED cause doctor never submitted form within the ten days of the fax sent. I told her you sent fax to wrong place gave her correct fax number, she said it would be there in 2 to 5 minutes.
Asked her about the blood work they requested, she said she had nothing there about more requested blood!??
Ask her if the first was then denied also, she said no and gave me the ref authorization #'s for the sovaldi and pegasy which she's also sending to doctor in fax.
This sounds like my doctor is dealing with a different dept in the insurance company that the one I'm dealing with.
Dean

Mike · « **Reply #12 on:** September 15, 2014, 05:21:33 pm »

Hi Dean,

Sounds like you made some headway. Make sure everyone is following through (even if that means calling daily - this includes your doctor). The squeaky wheel gets the grease!

Regarding your doctor, he may have been contacting the specialty pharmacy that handles prescriptions for your insurer.

I would recommend getting a hold of the pharmacy (which is not the same as the folks who handle your prescription drug benefit) and talk to them. They can expedite things and contact your doctor directly.

In any event, you're doing a good job with a frustrating situation!

Keep me posted.

Best wishes, Mike

beano · « **Reply #13 on:** September 20, 2014, 10:35:26 am »

Hi Mike

You can't make this stuff up!

I called pharmacy handling the case Friday late afternoon, person I talked to said she'd call back Sat.
Well I received her call this morning and it was denied because the blood work came back clean(no HepC) she said something was done wrong at Lab or read wrong she didn't know.
She's going to call Doctors office Monday and get back to me.

I Told her I as well will call Doctor Monday. I've had hepc for 40 yrs, 25 blood tests showing hepc, and on the last test when it counts most someone screws up!
I doubt I had the miracle of miracles in one week.

I'm baffled, did they misread samples, sent wrong blood? What do you think is going on?

Dean

beano · « **Reply #14 on:** September 22, 2014, 03:11:03 pm »

This soap opera continues.
Called doctor this morning and left message.
Two hours later while driving home my Doctor calls and tells me the blood work came back and I have hepc but it cleared and

( I was in heavy traffic and shock) so i'm not sure what he was saying. Then he said after some more numbers I have stage 3 cirrhosis and stage 4 is cancer so I should come in 6 months and we'll do tests to monitor it.

I said to him, the doctor I seen two years ago got the lab test results back and said I should start the treatment ASAP. and the doctor before that told me the same and your telling me all my numbers are to low for treatment? and i'm just carrying it or something? He then proceeded to read some more numbers and other things from lab tests to back his claim( at this point my brain went into a fog) then he STOP said " thats not possible" and the lab numbers were conflicting and lab definitely screwed up it's not possible (he was them mumbling to himself, stuff about the numbers) and then said " lab tech made big mistake I'll get back to you.

At least he found the mistake! I've decided also If he calls back and says the same stuff, I'm going back to the original liver doctor for second opinion (and treatment)

lporterrn · « **Reply #15 on:** September 22, 2014, 05:33:56 pm »

Wow - this is quite something. Well, the good news is that if they drag their feet much longer, the new drugs will be out and they are sooooo much easier.

Mike · « **Reply #16 on:** September 23, 2014, 06:15:34 pm »

Hi Dean,

I'm sorry you've had to go through all this. The ups and owns must be very frustrating to say the lest!

Given the conflicting blood work, the labs will have to be redone. The lab completing the work will most likely not charge if it was their mistake (I had a similar experience a few years back and that's how it was resolved).These things do happen; but Sheeish!

I'd also call the lab and find out what exactly happened and see if the next lab work can be expedited given the circumstances.

Not that you need it, but I'm going to say a little prayer for you tonight.

Best wishes, Mike

beano · « **Reply #17 on:** September 23, 2014, 10:00:37 pm »

Hi Mike

The drama is finally over!!(i hope)

My Doctor's nurse called today!! everything is a go, doctor called lab personally yesterday and results were corrected ,(17 mil viral load) HE then called Humana personally about the lab mistake and I needed to start treatment Immediately!

They approved treatment and just needed correct lab work. Nurse said I'll receive a call from TLCrx about shipment and instructions within a few days.

Looks like I'm back in the game again.

Mike · « **Reply #18 on:** September 24, 2014, 11:10:38 am »

I'm so glad to hear that, Dean!

Finally, some light at the end of the tunnel.

Best wishes, Mike

lporterrn · « **Reply #19 on:** September 24, 2014, 11:19:41 am »

You get an A+ for your tenacity. Wishing you the best.

beano · « **Reply #20 on:** September 25, 2014, 12:24:25 pm »

Thanks Mike and Iporterrn for your help and support.

Your right about having to grease the wheel Mike. Called tlcrx to see when it's being mailed, lady said they're waiting for insurance approval yet. I called insurance and rep. said it's approved and all tlcrx has to do is fill it or who ever I want to have fill it.

So I called tlcrx and left message, if I don't hear from them today I'm going to drive to doctors office am and ask for the prescriptions and take them to walgreen's myself. Imagine the balance reward points i'll get! lol

Mike · « **Reply #21 on:** September 25, 2014, 12:56:35 pm »

Sounds like a plan! You might call the pharmacy again and ask if they've actually contacted the insurer. And if not, when will they do so? I would also ask what their (the pharmacy) policy/procedure is in getting the authorization, and how you can help in the process.

Remember: You're the customer, the customer is always right and the pharmacy is going to make money on the transaction.

Keep us posted!

Best wishes, Mike

willie g · « **Reply #22 on:** September 25, 2014, 01:53:03 pm »

hey BEANOOO, ITOLD YOU if this hep c thing wasn't going to teach you anything that there would be 1,,,,that would,,, patience!!!! and a nicey voice when you called those cockaroaches who say 'yes we will get right on that sir''' and when they hang up they pick their nose and go back to their 20 inch sub texting to who knows who 50 million times a second[how in the hell do they do that? I tried it and id wake up with my fingers all crooked and definitely was having more nightmares] guess what they did to me a few visits ago and I just happened to look at the paperwork for next blood draw where usually I would just look at date on apt card,, THOSE mutant robots had my last name wrong on the form so this other guy got my results and I got his! his last name started with a t and mine is a g, besides that we have the same exact name,, imagine that,,,that day there was no nicey TALK, so beano whats the moral or answer to all this? nothing my friend, the whole world is really going LCRAZYO and YOU JUST CANT FIND ANY GOOD WORKERS OR HELP ANYMORE![except of course the moderators and folks on this site,,and there probably shaking their heads right now thinking''No willie g we kinda have a few around here too'' so BEANO my friend just always tell your self everything, I mean everything in life is going to get WORSE, and then your guaranteed a good day here and there and youll be thanking GOD more he he he] oh boy,,, PS don't forget to read the labels good cause THE NEW WORLD ORDER are slipping estrogen, Viagra, acid in your stuff here and there and if they get caught[they never will] they will say '' Sir, I don't believe you read the label right, especially the fine print[which you would need the hubble space scope to see] and then they will ask you to come with them so they can clear this up and yup you will end up in a fema camp across from QUTAMINO BAY,,,,,,lol lol you hang in there BEANO and remember for the rest of your life ,HECK,, IT COULD BE WORSE,,,, ''just Willie g

beano · « **Reply #23 on:** September 25, 2014, 05:06:04 pm »

LOL thanks for the pep talk willie g

I just received phone call from doctor's nurse who was excited for me. New blood work results showed I went from gen1 to gen2 so doctor changed meds to solvadi and ribopak and NO pegasy. She said she just got off the phone with tlcrx and they'll be calling me shortly about shipping arrangements.
I didn't know you could go from 1 to 2. is this true?

Mike · « **Reply #24 on:** September 25, 2014, 05:34:28 pm »

Hi Dean,

Given the screw-up with the blood work, it is, in fact, true you can change genotypes (but only when the lab makes a major mistake).

I would make sure this is correct - just as a back-up plan.

However, if you don't have to take the Interferon that would be great news!

Best wishes, Mike

beano · « **Reply #25 on:** September 25, 2014, 08:00:28 pm »

Hey Mike

I think he's right and I was never gen1. in 2012 the old liver doctor I had never sent my primary the hvc genotype results nor I. They sent only part of results and what i had and showed new doctor says, The limit of detection of the assay is !7.1 IU/mL for genotype1 then further down on the page it says note( !) indicates they was not dispersed into the flow sheet.
further tests needed for it.
So tomorrow i'm gonna call lab for hcv gen results from 2012 just to make double sure new doc has it right.

Mike · « **Reply #26 on:** September 25, 2014, 08:17:29 pm »

Hi Dean,

To quote Willie G ~ "Patience's a virtue. And Hep-C will teach you this."

I'm just glad you got the ball rolling and are on your way to slaying the dragon!

Your sword (AKA Sovaldi) will arrive shortly!

Best wishes, Mike

lporterrn · « **Reply #27 on:** September 26, 2014, 03:01:16 pm »

The plot thickens! That is great news. Beano, when you are done with treatment, I hope you (and everyone else on this forum) submit your Hep story http://www.hepmag.com/hep_stories.shtml Yours is especially rich.

willie g · « **Reply #28 on:** September 28, 2014, 11:19:40 pm »

you sure about that LUCINDA lol [as far as submitting full story?] your computer definitely will start smoking and literally say WARNING, WARNING ''just'' Willie g

beano · « **Reply #29 on:** September 29, 2014, 03:24:56 pm »

YES! Chapter 1 is finally over but not without a glitch.

The pharmacy never called as nurse said they would so I called them last friday and asked about shipment of meds, lady who answered phone said everyone was gone for weekend but she would look on pc and see, then She says " I see you started treatment the 28 of August"!?? Willie's post immediately entered my mind (Patience) and I said never mind I'll call back Monday when everyone is in.

Pharmacy Called today and Solvadi and ribopak will be fedex , and arrive tomorrow and I just need to pay the co pay now, gave them my visa credit card #'s(you can't make this stuff up) she runs it and she says, it's denied, numbers don't match address, after several failed attempts i give her my discover card same thing?

Now I'm worried they got my address wrong and my meds are mailed to God knows where! She said it might be a pc glitch on their end and she'll mail them with an invoice but mail check when it arrives. After we hung up I called back got a different lady ran a different card and it took it. Then I called the other card companies and made sure I wasn't a victim of identity theft.

Chapter 2
Anxiously waiting for my "SWORD" to arrive

Mike · « **Reply #30 on:** September 29, 2014, 05:51:05 pm »

Yes!!!! Finally! And you don't have to take the INTF.

http://www.youtube.com/watch?v=3gVPkaZykK4

Best wishes, Mike

lporterrn · « **Reply #31 on:** September 30, 2014, 12:21:07 am »

Beano, treatment will be a breeze compared to this.

willie g · « **Reply #32 on:** September 30, 2014, 12:26:31 am »

Good news beano,you can call and get a Tracking Number (call place sending them) then you will know they have been packaged and Sent and then you can track it from stop to stop and it generally gives time your GOODIES will arrive.. Sounds like the tough part is over and remember when your down to no less than five pills in each bottle (and count them and read label to make sure everything is OK,they once shorted me one pill from bottle once(they said that hardly Never happens,,""well i said ,THIS IS A HARDLY,,, so again congrats and eat alot of BEANS BEANO,with brown rice,, adios. "Just"Willie g killing Hep c(fingers crossed )

beano · « **Reply #33 on:** September 30, 2014, 10:15:30 pm »

The " SWORD" has arrived!

Thanks Mike for the inspiring song, how fitting! And I tracked it like you said willie g.

What an emotion when I opened the fedex box and seen then held then (counted thanks to willie g) what I've been praying for 40 YEARS is finally here

I start tomorrow am, I am a little nervous about the side effects of the ribopak.

Mike · « **Reply #34 on:** September 30, 2014, 10:26:23 pm »

The sword has arrived, and now it's time to lay it on the dragon!

Best, best wishes for a side-effect free treatment. Remember to drink plenty of water!

Mike

lporterrn · « **Reply #35 on:** September 30, 2014, 11:58:54 pm »

Wishing you an easy, successful treatment Beano

Cheydal · « **Reply #36 on:** October 09, 2014, 07:50:23 am »

Starting week 4 tomorrow, Drink water and lots of it.. I "got too busy" and forgot, suffered for it later. Have my 4 week blood work coming up, so I will keep you posted. Nausea and extra pain issues are the main problems ... And if this is all I have to deal with, Smallprice to pay.. I am a bit more emotional at times too. Noticed a weight loss of around 15 lbs.. So that is a plus! Anyone reporting hair loss? I am on Pegasus, ribavirin and Solvaldi .. Expecting next shipment of meds next Tuesday. So far the pharmacy and Humana have been awesome! Checking on my a few times a week. I read some horror stories on Humana And their pharm, but these people I am dealing with, have been awesome... These Forums have given me the info to do the battle .. 64 yr old grandma has a lot left to live!

lporterrn · « **Reply #37 on:** October 09, 2014, 10:53:38 am »

Love your spunk Cheydal. Glad to hear you are having a good experience with insurance and pharmacy. Hair loss typically kicks in around 8 to 12 weeks after starting, and may take 8 to 12 weeks to stop after treatment is done. Telling you now just in case you are wondering if you will ever stop losing hair. You will.

Cheydal · « **Reply #38 on:** October 09, 2014, 03:42:05 pm »

Awesome that EVENTUALLY it will stop, but the big question is.. Will it grow back? Hope hope

Mike · « **Reply #39 on:** October 09, 2014, 04:37:08 pm »

Yes. Your hair will grow back.

Best wishes, Mike

lporterrn · « **Reply #40 on:** October 09, 2014, 04:39:33 pm »

Yes it does. First peach fuzz, then tiny hair, then before you know it, you are sporting a Farah Fawcett look.
Actually, most of the loss and regrowth is only apparent to the wearer. I lived through it 3 times, and in the scheme of things, it didn't even make my top 10 complaints.

Cheydal · « **Reply #41 on:** October 09, 2014, 04:40:31 pm »

I know it's a petty thing, and I am not a vain woman.. And if I need to crop it I sure will.. But I was hoping that besides aging, I wouldn't go thru life bald LOL.. Keep that humor ...everyone!!!

beano · « **Reply #42 on:** October 10, 2014, 10:32:54 am »

Hi Cheydal and Iporterrn

What blood tests should they be doing at 4 weeks? Your right about the water, they told me 80 oz a day and soda, tea etc doesn't count. I also have Humana and they've been good so far.

Mike · « **Reply #43 on:** October 10, 2014, 12:07:57 pm »

These tests should be done at week 4 (a viral load, complete blood count, liver panel and thyroid levels). Here's a breakdown:

Viral load
WBC
RBC
HGB
HCT
MCV
MCH
MCHC
PLT
SEGS
LMMPH
MONOCYTES
EOS
BASOPHILS
NEU CT
LYM CT
MON CT
EOS CT
BAS CT
ALB
TP
ALP
ALT
AST
TBIL
TSH

Best wishes, Mike

beano · « **Reply #44 on:** October 10, 2014, 03:33:09 pm »

Thanks Mike

I really wanted this info so I can e-mail it to the doctor and nurse just before week 4 to make sure there on the right page with what tests need to be done.

Of all those tests which ones do I really want to see?

Today is day 10 for me, the Solvadi and ribavirin so far has been really tolerable just some muscle and joint soreness off and on. The eating a solid meal and plenty of water must be the ticket(thanks to the info I received in here).

Mike · « **Reply #45 on:** October 10, 2014, 04:39:46 pm »

Hi Beano,

The tests I listed were the ones I completed at week 4. I was on SOL+RIBV+INTF, so the protocol may be a little different.

The complete blood count is important, given you're taking RIBV. The liver panel will tell you if the inflammation is subsiding (assuming you had high numbers at the time you started treatment. However, these can fluctuate a little early in treatment; but should trend downward during mid and late tx). The viral load will tell you that the little bastard Hep-C viruses are being killed and how many.

The ones I looked at were the VL, RBC, WBC, AST, ALT and TSH.

Best wishes, Mike

lporterrn · « **Reply #46 on:** October 10, 2014, 06:14:48 pm »

Beano - Mike's right about the protocols varying. If you aren't using interferon, no need for TSH.

Mike · « **Reply #47 on:** October 10, 2014, 06:41:35 pm »

Hi Beano,

Lucinda is correct. The TSH measures thyroid functioning, INTF is known to affect the thyroid, which is why the test was included in my protocol.

That aside, I'm just so happy for you! I mean, the struggle you went through to get these meds approved - the ups and downs - and all the hoops you had to jump through.

I'm pulling for you, Buddy. And it will be a glad-happy day when you report: "The dragon is slayed!"

Best wishes, Mike

beano · « **Reply #48 on:** October 16, 2014, 08:37:09 am »

Hi Lucinda and Mike

Question on cortisone shot.

I've searched the world wide web and can't seem to find an answer, was hoping maybe you would know. Want to get cortisone shot in shoulder, would that effect the sovaldi and ribavirin?

lporterrn · « **Reply #49 on:** October 16, 2014, 11:36:10 am »

No - it is only an issue with interferon

Cheydal · « **Reply #50 on:** October 21, 2014, 03:29:20 pm »

Cheydal here,

Update, just got my labs back after 4 weeks on Pegasus, solvaldi, Ribiviran..

my HCV RNA is <15 IU/mL not detected and the HCV RNA < 1.18 Log IU/mL not detected, waiting to hear from the Dr. now... my white blood cell count is 2.6 L, Red Blood Cell 3.49 L (so that is pretty low and not good... but I guess it is the meds...

I hope this means the virus is getting knocked out!

lporterrn · « **Reply #51 on:** October 21, 2014, 04:46:01 pm »

Fantastic Cheydal!!!!!!!!!

beano · « **Reply #52 on:** October 22, 2014, 10:53:04 am »

Hi Cheydal
What awesome results!!

Have you heard from the doctor on the blood cell count yet?

beano · « **Reply #53 on:** November 04, 2014, 01:30:46 pm »

4 week blood work results

Nurse called said blood work came back and need to come in tomorrow to see another nurse and doctor hasn't read the results yet.
Then she said there was good and bad, I was UNDETECTED! But my red blood count was not good and the nurse will talk to you tomorrow.

Hey Mike
Slayer 1 Dragon 0 with 2 more rounds to play. I hope I hope.

Lucinda, how concerned should I be about the red blood count and would abuse of sugar be the reason or the meds?

Mike · « **Reply #54 on:** November 04, 2014, 02:33:46 pm »

Hey Dean,

4 weeks and undetected!!! That's excellent news!

I wouldn't worry to much about the red blood cells, as there are things that can be done to mitigate this (additional medicine, reducing the RIBV and so on).

The goal is to get you through the last 8 weeks and I'm sure the doctor is aware of this and the fact the treatment is working.

Make sure you discuss this with the doctor/nurse tomorrow.

I'm just really happy for you and the 4 week results!

Please let me know how it goes tomorrow.

Best wishes, Mike

PS - if you knock this dragon down in 4 weeks, it's Slayer: 50 Dragon: -0 and counting

lporterrn · « **Reply #55 on:** November 04, 2014, 03:21:27 pm »

Beano -
I am a little concerned that perhaps no one explained to you what ribavirin does - it caused the red blood cells to burst, and your count will get lower. It will very likely get lower still - a lot lower. This is expected.
So, although Mike is 100% right about not worrying about it, you need to know what the effects are. Fatigue, lightheadedness (may feel faint), climbing a few stairs may be hard, heart rate goes up, feeling anxious, sleeplessness, etc. Normal - yes for ribavirin, as long as it doesn't go too low.

It i yukky, but if you can bear it (and we'll help you), you can slay this dragon for good.

Be informed, skip the panic and hope to see you in the cured club.

beano · « **Reply #56 on:** November 04, 2014, 04:31:40 pm »

Fatigue, lightheadedness (may feel faint), climbing a few stairs may be hard, heart rate goes up, feeling anxious, sleeplessness, etc. Normal - yes for ribavirin, as long as it doesn't go too low.

I didn't have any of that the first week on meds but the last 3 weeks I've had all of those symptoms on and off. I knew the ribavirin would cause that but since I had none the first week I thought maybe my blood pressure meds were causing it being mixed with the ribavirin so I stop taking my blood pressure meds 3 days ago. Geez I feel dumb now.

lporterrn · « **Reply #57 on:** November 04, 2014, 05:13:50 pm »

Beano - don't feel dumb, but don't stop your BP meds w/o doc's advice.

It takes awhile for the red count to drop. Also keep in mind that when you are done with the meds, it will take about 4 weeks before you start to feel noticeably better - your bone marrow needs time to make all those red blood cells.

beano · « **Reply #58 on:** November 04, 2014, 06:17:18 pm »

Glad you told me about the 4 weeks to build up again when meds are finished.
As Mike said I'm going to discuss everything tomorrow with nurse so i'm on top of it. Before I started the meds the doctor told me TLCrx (where the meds come from) would be handling everything and they'd be the ones monitoring me weekly and checking up. I must have fallen through the cracks with them. But all is good thanks to you all.

beano · « **Reply #59 on:** November 05, 2014, 08:29:17 pm »

Seen the physician assistant today and got the results. You were right Lucinda, She looked on the pc and ask how many times I've been here I said once, she said I should have had a second visit before I take the meds to explain everything about them etc(as you pointed out the other day) so for the next 30 minutes I was schooled.
She said next blood test will decide if ribavirin might be lowered but not to worry it looks good.

   Cbc        Wbc: 5.3 x10^3/uL   Final
        Low    Rbc: 3.25 x10^6/uL   Final
        Low    Hgb: 10.7 g/dL   Final
        Low    Hct: 31.8 %   Final
        High    Mcv: 97.8 fL   Final
             Mch: 32.9 pg   Final
             Mchc: 33.6 g/dL   Final
        High    Rdw: 16.3 %   Final
             Plt: 186 x10^3/uL   Final
             Mpv: 9.5 fL   Final
             Neut #: 3.3 x10^3/uL   Final
             Lymph#: 1.3 x10^3/uL   Final
             Mono#: 0.5 x10^3/uL   Final
             Eos #: 0.1 x10^3/uL   Final
             Baso #: 0.1 x10^3/uL   Final
             Neut %: 62.2 %   Final
        High    Mono%: 9.4 %   Final
             Eos%: 2.6 %   Final
             Baso%: 0.9 %   Final
             Lymph %: 24.9 %   Final
   Hepatitis C, RNA Quant W/rfl Genotype        HCV RNA, Quantitative Real Time PCR: <15 IU/mL   Final
             HCV RNA, Quantitative Real Time PCR: <1.18 log IU/mL   Final

Mike · « **Reply #60 on:** November 05, 2014, 09:05:26 pm »

Hi Dean,

I'm glad you can continue treatment. It's working and the virus is almost cleared! It is below the threshold the VL PCR test can measure.

That's great news!

Best wishes, Mike

lporterrn · « **Reply #61 on:** November 10, 2014, 02:57:58 pm »

Hi Beano,
Those are some nice looking labs on the viral load! Sounds like you are in good hands. Your hemoglobin hgb is low enough that you are really going to be feeling it, and it will likely drop some more. Prepare for some challenging times my friend, because when we see hgb drop that quickly, it will likely drop some more and the side effects are frustrating. Are you getting help for the sleeplessness? Bit anyone's head off yet? Be very careful with road rage...I don't like taking drugs, but I could not have survived without hydroxyzine for the itch (it helped me sleep), and ativan for the feeling like I was climbing out of my skin.

Keep checking in with us and start keeping an eye on your hgb - if it gets to 8, your doc will likely reduce your meds - below that and maybe transfuse. I've seen people stagger around with 5, so I'm not worried about you. I just know who awful it is.

Cheydal · « **Reply #62 on:** November 11, 2014, 08:04:26 am »

I was reading the other posts, so what I am going thu is common,, crawling out of my skin.. Good description, so very tired and exhausted, and I have left teeth marks in several butts that I have chewed off lol.. I am normally meek and mild. But if it was not for this forum, I would be lost.. Getting feedback and knowing what others are experiencing, is a Great Help!

lporterrn · « **Reply #63 on:** November 11, 2014, 09:26:35 am »

Cheydal - I called it Ribarette's Syndrome (apologies to people with Tourette's) Oh Lord, I am amazed my husband didn't file for divorce. BTW, it takes 2 to 4 weeks after the last pill before it is significantly better.

Cheydal · « **Reply #64 on:** November 11, 2014, 12:21:54 pm »

Has anyone reported issues with breathing? I don't smoke but the last few weeks it I a struggle to breathe, going to see my dr tomorrow so I will check with him too, just curious, since there is such excellent feed back th tone just does not get from Drs. God Bless this forum and the moderators. I know I have cring Drs and staff, and even Right source pharmacy and Humana check in on me regularly, BUt this forum has taught me so much of what to expect, so I was able to push thru, knowing I am not alone out there, we are all slaying the Dragon (I like that)

Mike · « **Reply #65 on:** November 11, 2014, 12:46:12 pm »

Hi Cheydal,

I experienced some shortness of breath from the RIBV. This was due to a decrease in red blood cells, which carry oxygen throughout the body.

This is a pretty common side effect of RIBV, and can be well managed by your treatment team. Your doctor should be monitoring the red blood cell count through blood work while your on treatment.

Hope this helps.

Best wishes, Mike

Doluska · « **Reply #66 on:** November 11, 2014, 02:58:56 pm »

It is so helpfull to have this forum. I guess my health care team didn't want to tell me all those side effects, hoping that i wouldn't have them. But I have... What really helps me - I am telling to myself that this is only for short time and the goal is worth it! Lucinda , Michael you are on top of it and doing grate job! God bless you!

Mike · « **Reply #67 on:** November 11, 2014, 05:36:46 pm »

Hi Doluska,

I know what you mean. I was diagnosed with Hep-C in 2000 and for over a decade, never discussed it with anyone (and only told a few family members and close friends I had it). I was ashamed, embarrassed and just buried everything in a little compartment in the back of my mind.

I was so glad to find this forum, and, for the first time in this long journey, was able to share and discuss openly, my Hep-C infection and how it impacted me. I learned, through others, that I wasn't alone and was so grateful for the first class support I received from this community during treatment.

Lucinda was the first person to introduce me to the fact that Hep-C could be cured, which was a term alien to me just a year ago. And still to this day I learn from her and all the individuals on this forum.

So a big thanks to you, Doluska, for being part of this community!

Best wishes, Mike

Doluska · « **Reply #68 on:** November 11, 2014, 09:27:09 pm »

Thank you Mike! My path is rather tragic, I mentioned before, that I am after two open heart surgerys, and now must be treated, cose my enzymes were sky rocketing, and new treatment just came avalible. I am close to finishing 3 weeks, but still don't know would it be 12 or 24 weeks. Interesting, what criteria they choosing for 24 weeks instead of 12?
I was hiding my hep c from friends too. Even I newer try drugs or abuse alcohol . I was infected many years ago.
I am getting a lot of useful information and moral support from this site, really!
And there is nothing to be ashamed. People make mistakes, but all of them deserve second chance. Be good, and sure that you and Lucinda doing a very important thing!,,, D

Cheydal · « **Reply #69 on:** November 12, 2014, 03:49:12 pm »

Just got back from the Doc, I was feeling so bad and had by blood work done after 6 weeks, Do not everything in front of me but my red blood went down 2 more points, So rather than to stop treatment, I am opting for transfusion... I guess...

Interesting I found out that the Doctor SHOULD have had me on Iron and Vitamin supplements.. He said "didn't I give you any? " DUH!!! anyway, for those just starting out KEEP THIS IN MIND! He gave me a big box of Integra PLus to get me through the last 4 weeks. I know they are Doctors but they forget too. and if we are not own own advocates, then NO ONE is!

Cheydal Kicking the Dragon's ass!

Mike · « **Reply #70 on:** November 12, 2014, 07:00:19 pm »

Hi Cheydal,

I'm sorry to hear about the low red blood cell count; but I'm glad you will continue on treatment!

I slayed this dragon with SOL+RIBV+INTF and my red blood cell count dropped, too.

There was noway, however, that I would have let it stop the treatment.

Hang in there, this journey is almost over.

Best wishes, Mike

lporterrn · « **Reply #71 on:** November 13, 2014, 12:27:31 pm »

Cheydal - There is another option - dose reduction - it does not affect the outcome and it will make a huge difference.

zeena · « **Reply #72 on:** November 14, 2014, 08:45:22 am »

Lucinda
thanks for taking us through this lonely , challenging, and completely amazing journey of a type of health many of us havent had for decades.my son calls me bat sh*t crazy these days.its ok, i am carrying on.one more week of no sleep, then, one month of hope. thanks again

willie g · « **Reply #73 on:** November 14, 2014, 10:52:33 am »

HEY ZEENA your right about LUCINDA and far as I GO you think your CRAZY,come and spend a week with me! ''just'' willie g

Cheydal · « **Reply #74 on:** November 15, 2014, 03:24:13 pm »

I had my blood transfusion yesterday, and I no longer have to fight to breathe. I went to the bank this moring, ran my errands. Came home and rested, then I vacuumed my bedroom for the first time in 6 weeks. I feel great, and I think the vitamins and iron are kicking in as well. I am on week 9 of 12 and the light at the end of the tunnel is bright! I just found out a friend of mine went to the Dr and his liver is not doing good, so he may be following in my footsteps.. If I can do it, so can He!

Mike · « **Reply #75 on:** November 15, 2014, 03:35:58 pm »

That's great news! You'll be able to complete treatment and slay this dragon once and for all!

Best wishes, Mike

gulee · « **Reply #76 on:** November 26, 2014, 06:39:04 am »

Lucinda/Mike,

I am so grateful that you both are here sharing your experiences and giving us information that help us fighting and treating the hep c virus! My doctor, who is a very good one, never mentioned those side effects to me, such as road rage, sleeplessness, itching, anxiety, etc. Now I am experiencing all of them, which is a surprise and unexpected to me, but I have reported them to my doctor, and he is helping me go through the last two weeks of treatment.

So glad I found this site and so grateful to people in these forums! Truly appreciate your knowledge and kindness, Lucinda and Mike!!!

Quote from: lporterrn on November 10, 2014, 02:57:58 pm

Hi Beano,
Those are some nice looking labs on the viral load! Sounds like you are in good hands. Your hemoglobin hgb is low enough that you are really going to be feeling it, and it will likely drop some more. Prepare for some challenging times my friend, because when we see hgb drop that quickly, it will likely drop some more and the side effects are frustrating. Are you getting help for the sleeplessness? Bit anyone's head off yet? Be very careful with road rage...I don't like taking drugs, but I could not have survived without hydroxyzine for the itch (it helped me sleep), and ativan for the feeling like I was climbing out of my skin.

Keep checking in with us and start keeping an eye on your hgb - if it gets to 8, your doc will likely reduce your meds - below that and maybe transfuse. I've seen people stagger around with 5, so I'm not worried about you. I just know who awful it is.

Cheydal · « **Reply #77 on:** November 26, 2014, 08:22:28 am »

It is the day before Thanksgiving and I am getting my blood work, this morning. The Drs want to check the effects of the blood transfusion. However, I only have 2weeks after this to go. I still get out of breathe easily, but not near as bad as I was. Most days, no nausea.. Just tire easy of course. Pressing on of course. Happy Thanksgiving to all! We have a lot to be thankful for this year!

zeena · « **Reply #78 on:** November 26, 2014, 11:18:08 am »

hi cheydal.
i dont know about the peg but i do know the riba stays in your system
the last month on it i experienced insane ups and downs, my mania was so bad i was watching it happen to me. not fun, now , a few days stopping it i felt amazing at first, now pretty tired.i expect myself to be able to do everything now! but i am getting this is a process, cant imagine what its like to get a transfusion,i hope you get the best numbers ever for your lab results.good appetite tomorrow! zeena

Mike · « **Reply #79 on:** November 26, 2014, 11:47:39 am »

A good rule of thumb with INTF + RIBV is: For every month you are on this combination, it takes a month for all side effects to disappear. I completed 12 weeks and, although I felt better after I finished treatment, it took about a month or so for all the side effects to disappear.

I would note, however, that I felt noticeably better after the virus cleared and felt really great about 3 weeks after treatment.

Best wishes, Mike

Cheydal · « **Reply #80 on:** November 26, 2014, 02:57:26 pm »

All this info of what to expect as the final weeks are counting down is good to know, I do not expect to feel better immediately, I know it takes time to get the meds out of my system... I was wondering the last week do the Dr. ween me off or is it all the meds on the last day.. and then nothing the next day ? Just curious.. I guess I should have asked him when I saw him last, just so much to remember..

And my mind is a curious thing to waste... LOL !!

lporterrn · « **Reply #81 on:** November 26, 2014, 03:09:15 pm »

No weaning - just total freedom. Every week gets better.

gulee · « **Reply #82 on:** November 26, 2014, 04:02:18 pm »

Mike, It's so good to know and a lot to look forward to in completing my treatment!

I have a quick question to ask you and Lucinda/Iporterrn, would stop drinking coffee in the morning help my insomnia and anxiety? I drink 3-4 cups of coffee in the morning every day, even during my treatment in the past ten weeks, and it never crossed my mind to ask my doctor if my side effects of insomnia and anxiety can be lessoned by stopping drinking coffee. On the other hand I am also afraid of complete withdrawal from caffeine will exacerbate my current problems. I have only two weeks to go, what's your opinion? Thanks a lot!

Quote from: Mike on November 26, 2014, 11:47:39 am

A good rule of thumb with INTF + RIBV is: For every month you are on this combination, it takes a month for all side effects to disappear. I completed 12 weeks and, although I felt better after I finished treatment, it took about a month or so for all the side effects to disappear.

I would note, however, that I felt noticeably better after the virus cleared and felt really great about 3 weeks after treatment.

Best wishes, Mike

Cheydal · « **Reply #83 on:** November 26, 2014, 08:55:37 pm »

Lucinda and Mike, I would like to tell you on a personal level, I am very grateful to the both of you taking your time to help each of us get through our treatment. When some of us are finally free, you have a whole new group to get past the fires of the dragon. I have learned so much from you, and I hope that I will be able to let others know it can be done, and they can be cured as well. I commend you both on the honesty and enlightenment.

Happy Thanksgiving, dear friends, you are much appreciated!

Mike · « **Reply #84 on:** November 26, 2014, 09:16:43 pm »

Hi Gulee,

I was told to only drink 1 cup of caffeinated coffee in the morning while taking SOL+INTF+RIBV, as caffeine is a diuretic and can cause the loss of fluids. Knowing this, I kept my coffee consumption to one 16 oz coffee per day (I did cheat a little bit).

The reason is, that, it is important to stay well-hydrated while taking this combination. In addition, some of the side effects of treatment can include insomnia and increased anxiety and caffeine, in some cases, can magnify these.

Still, I'm a coffeeholic and didn't deny myself this pleasure while on treatment (I just didn't over indulge).

Best wishes, Mike

gulee · « **Reply #85 on:** November 27, 2014, 12:23:08 am »

Thank you so much, Mike, for your quick response! I will cut my coffee consumption to one cup a day for the next two weeks and see what happens. Happy Thanksgiving to you and your family!

Quote from: Mike on November 26, 2014, 09:16:43 pm

Hi Gulee,

I was told to only drink 1 cup of caffeinated coffee in the morning while taking SOL+INTF+RIBV, as caffeine is a diuretic and can cause the loss of fluids. Knowing this, I kept my coffee consumption to one 16 oz coffee per day (I did cheat a little bit).

The reason is, that, it is important to stay well-hydrated while taking this combination. In addition, some of the side effects of treatment can include insomnia and increased anxiety and caffeine, in some cases, can magnify these.

Still, I'm a coffeeholic and didn't deny myself this pleasure while on treatment (I just didn't over indulge).

Best wishes, Mike

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