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themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 11/12/2015 7:05 PM (GMT -6)   
We will resume our Hep C Treatment Thread here! Big Hugs treating members.
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 11/12/2015 6:34:49 PM (GMT-7)


Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/18/2015 8:52 AM (GMT -6)   
Just checking in. I've gone to some old threads and found some people have no sypmtoms at all. maybe some fatigue. I'm so happy that they had such a positive response. But, also wonder why some of us are struggling so. 2 of the 3 I found doing so well are using MMJ. Not available in my state, but can this make that big a difference. Might it be worth hitting up that pot smoking cousin we all have? Can't help but think there is something else. I drink my water. I try to rest. If I cannot go rest when the fatigue hits I will pay the rest of the day. If I don't get proper rest all the other symptoms bombard me. But, these people are working and running and OMG... how are they doing it?

I guess it doesn't matter. It just is what it is. Again, so glad to see that some will do so well.

I do blood tests again this week. I think just CBC and Complement Metobolic Panel. I'll post results when I get them. I expect to still see good numbers in the ALT/AST components. I don't think they will be doing another viral load until 12 weeks after treatment.

Hugs..... Rubi
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/18/2015 6:23 PM (GMT -6)   
Well...I'm on ER.waiting on blood work. Could not get a call back from the doctor so I called the specialty pharmacy and their nurse and pharmacist called back.both think I may be dehydrated. I had a very bad sPell today. Will update when I have more info.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 11/19/2015 4:51 AM (GMT -6)   
Rubi,

I am sorry you are at the ER. I hope you are feeling better this morning.

Let us know how you are doing when you can. We care. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/19/2015 12:14 PM (GMT -6)   
I am doing a little better today. Thank you. The nausea and vomiting are pretty bad and I was dizzy and weak and the aches and fatigue and just everything was bad last night. Even rest did not alleviate the problems. They have given me a prescription to help with that. I'm hoping with improved food consumption I will feel a little better. The doctor said it's hard for my body to flush the dead virus from my system if I can't keep fluids in. I'm sure that's layman terms, but I get that.

Then I had to contact the hospital this morning to get them to fix my file. They don't have my Cold Urticaria (allergy to cold) listed in the allergy section. So the nurse sees my pretty red bracelet, checks the allergy list and sees codeine. Then procedes to administer cold IV meds and cold IV flush. So I lay there cold, achy, sick, weak, and my arm is burning from the IV port in my wrist to my elbow from the vein being subjected to cold fluids. Thank goodness they now have it listed where that will not happen again. It can through me into shock. I am going to order my medical allert bracelet TODAY. lol

For today though I am a little better. I think I need to try to rest before I get so tired.Once I get to a certain point it just seems to take forever to recover. Yesterday was a bit of a set back, but I am still thinking positively. I do not want to give up.

I can't view my lab results yet, but the doctor at ER said things still look good. I'll try to post the results when they show on the portal.

Thank you for being here.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 11/20/2015 7:05 AM (GMT -6)   
Hope you are improving day by day, Rubi. Good to know they have given you something to help the nausea. I am sure you will be glad to be done with treatment. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/20/2015 8:38 AM (GMT -6)   
Yes, maam. I will be glad to be done. I am 30 days and counting.

I find it very interesting to see the variation in the severity of the side effects in people. I'd be curious to know what the common factors are in none vs severe. Is it the genotype? It doesn't appear to be age or gender. Even activity level does not seem to be a contributer. Perhaps when my brain fog and exhaustion no longer haunt me I will look into that. Could I post a thread with non-identifying questions that related to this issue? Although, I'll bet with some research its already out there.

OK> Rambling now. I've been up a few hours. Even cleaned some much neglected areas in my house. I knew if I was going to do it I'd better do it early. But, if I don't rest now I'll not have anything for later.

Love, love, love that I have a place to go where people understand.

Rubi

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 11/20/2015 9:41 AM (GMT -6)   
Hi Rubi, sorry to hear what you're going through...I can totally relate when I think back to 2 years ago.
I know you know this, but it never hurts to hear it from a "kindred spirit".
It is so, so worth it. Life without hep c is a blessing.
The 30 days will soon be a thing of the past and post-tx. most of us started to feel better in days and again...substantially better in 2-3 weeks.
Honestly though, it took me about 6 months to get back to some semblance of normal.

I'd love to hear what you discover about side effects and any commonalities, although I think the the answer is just gonna be...we're all individuals. I was very close to about a dozen others who were in tx. about the same time. We compared and researched side effects, etc., but it just came up the same old thing. Attitude is so important, but it just doesn't explain everything. Whether it's a response to chemo, hep c tx, etc., we're likely to fall close to the middle of the old, bell curve.

Hope you feel better...soon!
Hang tough and keep the faith.

______________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 11/20/2015 12:43 PM (GMT -6)   
Rubi,

about the sides and who gets worst case vs. who gets few to none. You are not the first person to ask this:)

My husband treated with the old treatment, interferon/riba. Twice.
A lot of Hep C folks have treated multiple times. The older meds were not so efficient.

The first treatment themister did, he had a difficult time for 2 days after his interferon shot. He gave that to himself on Friday's. So, the worst sides of interferon were when he was off work. Then he would manage the next 5 days pretty well. He never felt good after his bloods tanked from the riba at about 12 weeks in, but he only missed a couple days work in 6 months. He failed that treatment and relapsed before his 4th week post EOT(end of treatment).


The 2nd time he treated... 5 years later. Same combo of meds, same dosage. He did ok at first. He had same problems the 2 days around his interferon injection .....until about 8-12 weeks.

Everything become different. He was jittery, had insomnia, could not walk without being totally breathless. He was nauseous, had a nasty rash on face, trunk, legs. He had wooly spots in vision, and he was bedridden the last 3 months, except for about 2 hours in the morning hours. His gallbladder became sick and he got an infection that was life threatening. He developed an egg size cyst on his neck, that was benign. His gallbladder crapped out and he was hospitalized needing platelets, transfusions, and rescue meds. They removed the gallbladder.

I wanted him to stop treatment because frankly, I was afraid he would die. But, the specialists convinced him he could continue. He only missed one does of riba in that time. And he now has been cured of Hep C since he went undetectable in Aug 2011.

So back to you question. Why do some people get awful side effects when others get minimal to none? Even the same person... on the same treatment... can have different sides when treating more than once. It makes no sense.

Keep plugging along, kiddo, you are almost done! I will watch for your last days countdown. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Post Edited (themiz) : 11/20/2015 11:51:14 AM (GMT-7)


justvlm
New Member


Date Joined Feb 2015
Total Posts : 2
   Posted 11/20/2015 2:39 PM (GMT -6)   
Hello, been hiding in the shadows, reading and gathering knowledge. Started my journey today. Sovaldi + Riba.
GT 2B, DX 2007 BX F0/1
Sept 2015 VL 6 million , AST 125. ALT 100
Start Sovaldi + Riba on 11/20/2015 for 12 weeks

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 11/20/2015 3:15 PM (GMT -6)   
Welcome to the Hep forum! Glad to see you out of the shadows. Let us know how things go as you move through the 12 weeks.
This treatment is really successful. So happy to see more and more people eradicate Hep C. We have a nice group of members treating right now, and a few pop in that treated in the past.

Did your doctor tell you to drink a lot of water? We suggest you drink 1/2 your body weight in oz. of water, per day. (If you are 100 lbs, drink 50 oz water, per day). Also, eat a little something fatty when you take riba. It can be something light like a couple of crackers with nut butter or avocado. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/21/2015 10:37 AM (GMT -6)   
Thank you everybody for the encouraging words. I keep a good attitude most of the time. There have been a couple of moments when I wasn't as on top of that as I should be, but as a whole my attitude is good.

Welcome justvlm. Please don't let my symptoms discourage you. Many on here have had none or minimal side effects from the medicine. This is definitely the place to be. People here understand exactly where you are because they have either been there, are there, or love and support someone who has been.
I was looking over my labs this morning. I'm not sure why I have not really been paying too much attention to the GFR numbers. They have been running less than 60 for most of the time and now I have a couple that read 52. This test is kidney related and indicates there is something going on there. Does anyone know if this is hep c related or treatment related? I'll be researching as well. Sometimes I have to read through many articles to find one I understand. lol

Hugs
Rubi

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 11/21/2015 12:28 PM (GMT -6)   
Starting my final (I hope) last 30 days today and feeling much much better than a couple weeks ago when I was at the half way point.

I decided to take the at-home blood test and it took several minutes to show just a very slight indication of virus present. So I'm hoping that it will be gone after another month. Starting from 17 million is a lot of virus particles to remove.

After making some diet changes to eliminate foods high in ammonia and starting taking a small daily dose of lactulose my ammonia levels are half what they were (now only slightly elevated) and the brain fog and confusion are nearly eliminated. I still have some dizziness but my endurance is getting much better. I know the Riba is causing the dizziness because I don't have it in the morning until I've taken the Riba. If I had it to do over I would take another med instead of the Ribavirin even if I had to knock over a liquor store to pay for it. (Joking)
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 11/21/2015 7:24 PM (GMT -6)   
  you will always test positive for hep c. im cured, but still test positive for hep a,b,and c.
 
your body will maintain the antibodies created by hep c tx. save your money, and wait for your next pcr rna.
 
Wish you, the best, going forward.
barry

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 11/22/2015 4:18 PM (GMT -6)   
Thanks for that info.
It's $150 and a 4 hr drive round trip to get a load count. I think I'll be getting the test about a week before meds finish.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 11/22/2015 4:28 PM (GMT -6)   
Hope you are doing better rubi. I only felt as bad as you do a couple nights. I can't imagine how you are dealing with it everyday.

How many ribavirin are you taking? I think it's 5 x 200 a day if less than 165 lbs and 6 if over. I know the riba was doing the bad. I'm feeling better in the morning before I start taking it.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

virgomrs
Regular Member


Date Joined Sep 2015
Total Posts : 23
   Posted 11/26/2015 1:44 PM (GMT -6)   
Well three weeks left. My last labs are essentially unchanged since the previous two weeks report. I'm pleased that the RBC's and hgb have not gone down any more.

I tried to go for one of my walks last night and struggled to get back to the house. Fortunately my walker has a seat on it! I'm not sure it's worth trying to go any more until the treatment is done.

I still feel fortunate that my fatigue is my only bad side effect. N & V and headaches would be much worse for me.

I'm optimistic that my not detected status will continue and I will be truly cured. Very thankful for that on this Thanksgiving Day. May you all have a great day.
F 66 - detected as a blood donor in '92
RN for 32yr - on disability in 2002 (fibromyalgia, chronic back pain post 3 surgeries, depression)
GT 2b
Viral load 8,110,281 - 9-4-15
Sovaldi/Ribavirin (12 weeks) start date 9-23-15
UNDETECTED at week 4 of treatment - so far.

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 11/27/2015 7:22 PM (GMT -6)   
Best of luck virgomrs. I'm counting down the last 25 days. I haven't had a load count but I feel so much better and getting my appetite back. We will recover.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 11/29/2015 8:40 AM (GMT -6)   
Hope everyone had a great thanksgiving. I have been down the last two days. I cooked for two days and had a little bit of help, but it was just too much. I hope I do better today.

So good to hear from you Virgomrs. Exercise will have to wait for me too. But we are into the last few weeks. We can do this. I think you will be cured as well.

Thought, I am taking 3 Ribaviran in the morning and two at night. At this point I'm pretty frustrated with the doctors. My GI won't help and my PCP up and quit. Right in the middle of everything. So now I have to get re-established somewhere else. I don't intend on going back to my GI and he will no longer be on my insurance come January so I need someone to order my final blood work. I'm just not going to worry about it now. I have more than 3 months to get it worked out. For now I'm just going to take my meds and struggle through.

Fatigue is still the number one killer for me. The vomiting is better, but I'm nauseous most of the time. Joint aches, chilis, dizzy, weakness, and then crying come often. But it's ususlly if I've done too much during the day. And almost always in the evenings. I have gum and tooth pain that comes and goes.

I keep telling myself I only have a few more weeks. Just a few more weeks. I think of all of you often, and that also encourages me to be strong and continue. I think of the ones that had to take interferon and that keeps me motivated as well. If they can do it, I can do it.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 12/7/2015 1:38 PM (GMT -6)   
12 more days to go. about time to get a load count test.

I switched the ribavirin to the Abbvie brand Moderiba a few days ago and WOW.. that brand really sent me into orbit. I was so jittery then had lower back pain then my systolic bp went out of whack then I had chest pains. I cut back but it's definitely something different.

Hoping for a "not detected"

Good luck everyone.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 12/7/2015 4:40 PM (GMT -6)   
Why did you switch, T? I'm not familiar with that one.

I think I have 13 more days. But, I could have counted wrong.

Rubi
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 12/7/2015 6:15 PM (GMT -6)   
They have a support program that gave it to me. I was supposed to get it a month ago but my doctor's nurse just filed the paperwork. I think that was probably a good thing in the long run.

I'll take my last Sovaldi on the 20th. Sunday week.

Abbvie manufactures the Viekira Pak the hep c cure that caused a lot of patients to have serious liver problems. Now they came out with a new combination that just about cures everyone with type 1.

If you read other hep c forums you'll read many post from people who were taking Viekira. I believe it did cure a lot of people....

....although I read the other day that less than 2.4% of hep c patients have been treated in the US. And that's really a wild guess because there is no free testing/screaing on any wide scale to have the information to know how many people are actually infected.

Ironically I have seen Hep C at home test available in bulk of 2 to 5 thousand for around thirty cents each. That test is very accurate and I have no doubt that it could be made for a nickel or less if someone with the resources was really interested.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 12/8/2015 9:17 AM (GMT -6)   
Yeah, the 20th is the last day for me. Or should be. We are on the last leg of this race... Haven't heard from virgomrs in a while. Hope she is doing better.

I am still about the same. I don't know how I'm going to get Christmas shopping done. I think I'm going to have to use a wheel chair. I've tried shopping only at stores with buggies so I can lean on them, but I was down for 2 days after a 3 hour shopping trip. And that includes drive time to and from the different stores. It was probably only 2 hours total of shopping. I guess I should have just done it online. I did go to Sams and buy bags in bulk though. I won't have to wrap everything.

Kind of funny the adjustments I'm making. lol But, I'm also making plans for post treatment. I love the Sparkpeople website and have been on it for years. I haven't used it much lately, but I plan on using it to outline and track diet and exercise. I know I will need to start slow and build up strength and stamina. They did not have a hepatitis specific group, but there were some that dealt with liver and kidney issues. I'll probably join a couple of those as well. And, they have a mobile app (all free on sparkpeople) that is a quick reference for tracking diet, water, and exercise.

I know I have to deal with the now, but I sure feel better when I am making plans for the future...

Sorry for rambling..... blame it on the ribavirin...lol
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 12/11/2015 10:51 PM (GMT -6)   
Well our systems are so loaded with powerful drugs now that they'll be around a while. Hopefully they have done their magic.

I'm feeling really good but I did have to cut back the riba to keep my heart from racing and running up my systolic bp. Hope to take lab test Monday or Tuesday.

8 more days
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
Probably got infected 45 years ago

Rubi
Regular Member


Date Joined Sep 2015
Total Posts : 79
   Posted 12/13/2015 6:42 PM (GMT -6)   
OK. virgomrs should finish up in a few days. I hope we hear from her soon. Tblount and I are on our 7 day count down. I have actually had a few days this week where I felt a little better. At least I haven't thrown up as much and the fatigue didn't hit quite as hard. I say that and after I tried to go do some Christmas shopping today it has hit like a ton of bricks. But....7 more days! I know I can make it to the end.
F 59
GT 2
Viral load 5.6 million as of 7-24-15...42 as of 10-21-2015
Sovaldi/Ribavirin start date 9-28-15


"They sicken of the calm that know the storm." Dorothy Parker
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