Hep C Discussion Forum

Cinnamon Girl · Guru

RE: The Four Week Mark: Whoopie!!!

Mona · Member

Congratulations Fem,

I am at 1 &1/2 week mark. Still a newbie. I love seeing everyone's progress and experience. Thanks for sharing

Femapples · Veteran Member

I'm doing 1200 mg per day, 600 mg in the morning and 600 in the evening. Oh, yeah...right, Bubble.

I was positive my numbers would show me going backwards and everything that had improved had declined. I guess I was wrong about that, thankfully.

The depression comes in waves. Yesterday and the day before, I was filled with energy. Today, not so much. I think it may have to do with the occasional 1/2 Xanax I take to help me sleep. I think it gives me a hangover and exacerbates the depression. Also, my husband hovers over me constantly and he's driving me nuts.

Fem

Tig · Admin

Bubble,

Maximum weight based dose of Ribavirin is 1200mg per day (600mg am/pm).

bubble · Senior Member

Great numbers Fem, WBC's are awsome! 206 on the Platelets is my number also. (up from 160's) Are you doing 1200mg Riba twice daily? I'm on a see-saw with the fatique and depression, but it appears to be letting up. 16 days to go!

Tig · Admin

Hi Fem,

Thanks for the update. Everything looks good and the anemia is expected considering the Riba, but you're holding your own. Unfortunately the fatigue and weight fluctuation is part of it too. You're getting close too. Seems we're going to have several here ending tx about the same time. We'll have lots to celebrate in the weeks to come! Just rest and take care of yourself, you're almost there! Good luck =-)

Femapples · Veteran Member

Ok Folks,

As promised, here are my most recent lab results. Viral load was not measured in this round but will be in on June 27th. It was already undetected. The doctor has increased the ribavirin back up to the original 1200 mg dosage as of today. All of my counts seem to be normalizing. The uric acid in particular has decreased from 9.5 (in April) so that's very good. I'm having another CBC next week. I also asked that the protein the my urine be tested as well since my kidneys are involved. I'm just curious since its high numbers alerted the docs to the kidney problems. I know I'll have to see the nephrologist when this is over in 20 days (but who's counting).

I'm gaining weight and feel like crap because of it but I seem to have no control and the weakness from the riba doesn't help the situation. But...no more desserts! Yeah, sure.

FemA.

WBC 8.7 thous/L 3.8-10.8

RBC 3.70 mill/L Low 3.80-5.10

Hemoglobin 11.2 g/dL Low 11.7-15.5

Hematocrit 35.0 % 35.0-45.0

MCV 94.6 FL 80.0-100.0

MCH 30.2 pg 27.0-33.0

MCHC 31.9 g/dL Low 32.0-36.0

RDW 15.0 % 11.0-15.0

Platelet Count 206 thous/L 140-400

MPV 9.0 FL 7.5-11.5

Neutrophils,Absolute 5510 cells/L 1500-7800

Lymphocytes,Absolute 2590 cells/L 850-3900

Monocytes,Absolute 370 cells/L 200-950

Eosinophils,Absolute 250 cells/L 15-500

Basophils,Absolute 10 cells/L 0-200

Hep C, viral load 26,000,000, monoclonal gammopathy of undetermined significance (kidney), glomerulonephritis (kidney). 1994: Interferon, 2005: Interferon & ribavirin, 4/1/ 2015: Viekira Pak & Ribaviron, 12 weeks EOT: virus UND

Femapples · Veteran Member

Thanks everyone. Viral load won't be measured until 12 weeks but all sorts of other counts will be measured. I'll post when I get them.

I do wonder what's going on with my kidneys but, first things first...then the nephrologist.

Scruffy, I never would have said that. But we'll leave that for another time.

F.

Scruffy · Guru

Hang in there Fem.

Your hb isn't bad at all considering your on TX. Mine tanked at 7 weeks 7.4. I had to have my hb checked weekly also. You can do this, walks in the fresh air like Tig said do wonders for ya. Anger is another side effect of the riba. Try to slow down and think before you speak or act.

Your name reminded me of a story I will share.

One time a head doctor asked me If I was out in the woods and I saw a police car, a ambulance and a hearse parked around a tree what do I think would be hanging from the tree. I looked at him and said apples!

Best wishes for you.

Tig · Admin

Hi Fem,

That's a decent Hgb, considering what you're going through. You've got some wiggle room now and will hopefully stay up through the end. The fatigue and mood may be more of an issue, but you'll do it because you want to. This is the last leg of your journey and your finish line is in view. I learned to always smile after I bit my wife's head off! She's getting even with me now, lol! Sounds like you have a great guy there. It will be over soon....

Post your labs when you get them.

Femapples · Veteran Member

CBC will be next Tuesday along with a battery of other tests. They're checking my hemoglobin every week. It was at 11.3, which is just .3 south of normal so they raised the ribavirin. My husband is worried about me and the power of these drugs. My anger is wearing on him.

Fem

Tig · Admin

Riba is a strange egg and effects us all differently, yet in many ways the same. Did you have a CBC this week? I'm curious what your numbers are. You can tolerate a pretty low Hgb, but it's a strain, no doubt. It's worth fighting through the nasties and we'll do all we can to help you through it. Food, water and rest are your friends. Handle the fatigue any way that works. Try a stroll in the fresh air, it improves many things, try it daily. Staying idle can add to your tiredness, so keep the joints moving and oxygen flowing. Just watch the sun exposure!

Femapples · Veteran Member

Second day on 1000 mg of ribavirin and it's kicking my ass. But I hope I can get through this without my hemoglobin dropping again.

Thanks for the support.

FemApples

Cinnamon Girl · Guru

HI Fem,

I`m pleased your Hb count increased a bit after a little break from riba and it`s good news that your doctor has put your dose up again.

Another 4 weeks isn`t long to go, just go with the flow, relax and let the drugs do their work.

Keep us updated and best of luck! smile

Tig · Admin

Hi Fem,

I'm pleased to hear you are hanging in there. The 1000mg dose of Riba is a valuable tool in your treatment. 4 weeks will go by fairly quickly and every extra arrow in your quiver is a plus. If you run out of breath and energy, as Bubble mentioned, sit down and relax. It's a good time to enjoy some of your favorite movies and books. Keep it up!! =->

bubble · Senior Member

Hi Femapples, My take on Riba is if you have room in your Hemaglobin stats the Doc will most likely try uping it. This supplies more oxygen to your blood, but at the expense of your red blood cells. Maybe thats why I am huffin and puffin. It increses the effectiveness of Tx. Take care on that Riba, you are taking more than me and I give you alot of credit. Stay in control. Keep us all informed. Good luck.

Femapples · Veteran Member

Count remained stable. In fact, it increased very slightly, so the doc increased riba again by 200 mg. Let's see how that goes. Now I'm up to 1000 mg. I'd rather be miserable for 4 more weeks and destroy the virus rather than feel good and let one little piece of it hide.

Femapples · Veteran Member

So my hemoglobin count went up slightly but is still a little low, hematocrit and RBC are also a little low. They are all just the other side of normal. The doctor increased the riba 200 mg more making the total dose 800 mg. I'm much happier with that. But I have to have another blood test on Thursday. Personally, I have a feeling my counts may fall again. But here's hoping I can handle it.

Paul B · Senior Member

Scruffy wrote:
I don't know how important the Riba is with the new treatments. On the old treatments we used to fight when a reduction was mentioned.

Yea. When I was instructed recently to reduced Ribavirin I laughed at them and said that's not gonna happen.

I stayed the course at full strength all the way through. Was tough but satisfying knowing I had taken control of the process.

I imagine for some though a reduction is necessary.

Femapples · Veteran Member

Sonogram today and results came within hours. I'm normal (well, in this aspect). The next hemoglobin test is tomorrow. The nurse told me she asked the drug rep about the riba reduction to half its original dose and she told me he said it was ok. However, I don't really believe it and asked if I could at least increase 200 mg more. She, of course, said to wait for the test results and the doc's recommendation.

Yesterday I felt pretty good. Today I feel very tired and heavy.

Femapples · Veteran Member

Bubble...

Heart med? Why?

Scruffy · Guru

Hi Fem

Talk to your Doc and get some info from him on that dose reduction. Maybe hes being a little wary if your HB dumped fast. Like Mallani said 10.6 isn't bad at all but your Doctor knows best talk to him and ask why.

bubble · Senior Member

Hi Femapples, Yes, that bloated feeling does come with the Tx. I find it usually subsides at night, and then goes back up in the morning. Ginger Ale helps. Wishing for a good burp helps too. LOL. Watch too much Riba, it can cause anemia at too high or too low a dose. Tell your Doc about heart med. also. I am 600mg Riba- morning and night. The night dose has no sides at all for me. The 4 to 8 week area is tough, but like LoneWolf says soon you will have no side effect at all ! I agree as most days are better now than bad. Relax and think of better times to come. Keep us posted. On to SVR!!!!!!!! (Oh it's almost Blueberry Season in Jersey)

Femapples · Veteran Member

Thank you for your concern. I have read and reread a variety of materials about Hep C and various treatments. The information you provide on this forum has been invaluable. I am one of those people who can easily magnify a health situation into a death sentence. Here's an example. I noticed the other day that I felt bloated. When I spoke to the doctor's office about something else, I mentioned it. But I also mentioned that I think I had a salt mishap. I accidentally salted something so much that it was barely edible. Plus the weather got very hot quickly. My ring was tight, my belly felt distended but I really did think that I was just temporarily bloated. The next thing I knew, I was being scheduled for an abdominal sonogram (tomorrow) to check for ascites (sp?). I, of course, looked it up and went a little berserk. However, I immediately cut the salt and today my ring is loose and my belly doesn't feel as if I have an alien about to burst from it. But I had to take a Xanax the other night to sleep.

In my various forays into Hep C research, I learned that just about all of the physical ailments I've had over approximately the past two years may be attributed to this insidious disease. When I had the interferon/ribavirin treatment 11 years ago, I had this same problem with ribavirin but was about to start Procrit when everything went haywire and I had to stop the entire regimen. I really want to increase the ribavirin and damn the torpedoes, and I've noticed that some people have posted that they're sneaking extra pills despite their doctor's orders. It's tempting to do that.

Thank you for your support. You can't know how much I appreciate it. I have been a mistress of brinksmanship my entire life. This is what got me into this situation and my biggest fear is that I may not have strpped back from the brink in time this time.

Fem

Cinnamon Girl · Guru

No need to be scared, Fem. As Tig said, it`s much better to know the details of your treatment so that you can be more involved with the decisions your doctor makes.

This is why it`s so beneficial for people to join a forum such as this where information is freely shared.

You`ve responded very well after only 4 weeks so you already have a headstart, you`re well on track!

Let us know your lab results when you have them, and best of luck! smile

Tig · Admin

Hi Fem,

No reason to be scared. It's simply good information to understand and be prepared to discuss with your doctor. You would be amazed at the number of people that don't have the first idea regarding treatment in general and when it comes to medication administration/dosages, they are clueless. You won't be in that situation when you go in. It's so important to be able to advocate for yourself and by understanding what has been discussed, you will be ready.

Get your blood work done and since you have reduced your Riba dose beforehand, I think there's a good chance that your Hgb will have gained some ground. Then you can politely inform the good doctor that you want to increase the Riba at or close to the original dose. This will work out! Just go in prepared and I think you'll be fine! Be positive and take notes with you if necessary. Your doctor will know you're involved and committed to winning this battle!

Femapples · Veteran Member

Oh and by the way, now you're all scaring me.

Fem

Femapples · Veteran Member

I was taking 1200 mg a day. Now it's 600 mg a day. I want to increase it to at least 800 mg but I need to wait for the next blood test which is Thursday. I will ask to increase it because I want to keep this virus at UND with no relapse. However, when it comes to meds, I'm a cheap date.

Fem

mallani · Guru

Fem,

The correct dose of Ribavirin is 1,200mg/day for those over 75 kg, and 1,000mg/day for those less than 75 kg.

Ribavirin is made by many manufacturers, and the common ones are Rebetol and Copegus, which are 200 mg caplets/capsules. So the daily dose is 6 (or 5).

Some companies make Ribasphere or Ribapack, which may be in 200, 400 or 600 mg capsules. Check the dose on the package insert for whatever brand you're taking.

Daily doses of less than 800mg may result in decreased blood levels and effectiveness. Cheers.

bubble · Senior Member

Femapples: Wow thats a lot of Ribavirin. I do 1 and 1 at night. I feel this week-end it is starting to drag me down. Getting weeker and more tired. I was taken off Pegasys after 42 of 48 because of anemia. Glad you Doc is adjusting it. Mine might have to also. I do my 8 week blood test next week. I seem to be seeing an elevated serum/glucose. Never had that before. Will watch for it again. I pray you handle the Riba well,and good luck.

mallani · Guru

Fem,

I would want my Riba dose increased. 3 caps/ day is only 600mg. A Hb of 10.6 is no big deal. I would ask to go back up to at least 800 mg/day. Cheers.

Cinnamon Girl · Guru

Hi Fem,

It`s great news that you`re undetectable at 4 weeks, a good sign that you`re responding well to the treatment. Congrats!!

Let us know the results of your next blood tests when you have them, and I hope your doctor puts your riba dose back up again soon. A reduction of riba is usually considered when the Hb level drops below 10, but I`m sure it must have made you feel better!

Best of luck to you and keep us updated! smile

Femapples · Veteran Member

Doc reduced the Riba to 2 in the morning and 1 at night with the Viekira Pak. I feel better already. My hemoglobin count had dropped to 10.6. Being retested next week. If it rises again he may adjust the dose upward again. I hope so. I know it boosts the effectiveness of the Viekira Pak. I also noticed that some doctors are using Riba to boost the effectiveness of the Harvoni in some circumstances.

Tig · Admin

Hey Roey,

It's great to get such a nice message! Thank you so much!

I just don't understand why your doctor won't cave in and do that test for you. Have you demanded one? Tell him/her that you don't want to wait that long because it's making you anxious. I had one every 4 weeks for 7 months, EOT and then Weeks 12, 21, and 52! I had to know, lol! How about I give you one of mine? It's already SVR, just like you will be, I'm confident of that! Keep your spirits high and look forward to the future, it looks very bright for all of you! WOOT!

Fem and Bubble, I agree with Scruffy. You're obviously experiencing the drag of Ribavirn. If you can tough it out, do so. Take advantage of every opportunity! Might be a good excuse to buy that new recliner you always wanted!!

Scruffy · Guru

Hang in there Fem and Bubble. I don't know how important the Riba is with the new treatments. On the old treatments we used to fight when a reduction was mentioned. If your running out of gas its probably the Riba effecting your HB. If you don't want the reduction in the Riba express this to your Doc and show your determination to tolerate the low HB if you can. Give your doctor the last say though he knows best. I had to lower my dose of Riba for maybe the last 2-3 weeks I treated. I gave in cause I couldn't see another transfusion being that close to home after 45 weeks. Hang in there its worth it.

Best wishes for you guys!

Femapples · Veteran Member

Bubble,

Doc isn't going to take me off Ribaviron completely, just reduce it if necessary. Tomorrow is the blood test. I've been very tired. I can do one major thing a day and then I'm spent. Could be the Ribaviron side effects, could be the lower hemoglobin or a combination. We'll see.

Fem

Roey · Member

Tig, Wassup? I just had to tell u the I absolutely L O V E your new avatar! Hope all is well with you. The end if July is when I get the results of Harvoni. Since I started the 12 week regimen til finishing it on Aoril 25th. My Doc would not take any viral loads on me. I'm anxiously awaiting July 27th to c if Harvoni killed this freakin dragon. Until then u remain as you are. An uncredible upbeat person! Roey

bubble · Senior Member

I am in the same boat Femapples. Doc may take me off Ribavirin he said at first. Depends on the same. So far so good at week 6. Some heart burn developing I never had. The Monster is choking my windpipe trying to escape. Meet your fate Mr. Monster. Hep C is a dragon, I agree.

I got my statement from Acreedo Pharmacy........ I pay 5 bucks a shipment !!!!!! BuuuuWaaahhhaaaaaaaaaaaaa!

Tig · Admin

Hi Hill,

That's great news! Time flies when you're having fun and killing Dragons! You're going to have a huge drop in your viral load and you'll see how effective Harvoni truly is. We'll be waiting for the results, good luck!!

Groupergetter · Guru

How time flies, seems like just last week when you started. No need to be nervous. You will most likely be undetected.......or very very close. These are powerful meds. Congrats, you're doing great and the news is about to be even better :)

-- Edited by Groupergetter on Wednesday 6th of May 2015 12:30:36 AM

hill418 · Member

Finished my first bottle. Go to doctor on Friday for blood work. Nervous.

Tig · Admin

Hi Fem,

Thats great news!!! It qualifies for one big WOOT! I know how thrilled that feeling is and hope you don't hurt yourself by doing all those back flips. Stick to just happy dancing right now, lol! It won't be long and you can play "Another One Bites the Dust" by Queen! Good job....

Femapples · Veteran Member

(Sung to the tune of "Unforgettable") Undetectable, that's what I am.......

I am positively thrilled. However, my hemoglobin appears to be dropping so I'm being retested next week and may have to reduce the Ribaviron. I saw some posts about that in another section and the posters talked about sneaking a Ribaviron pill here and there. That's exactly what went through my head, but I don't think I'm going to take that chance.

FemA.

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