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Post Info TOPIC: I'm No longer Ranting I am finally on the Harvoni Train. Time to slay a Dragon.


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RE: I'm No longer Ranting I am finally on the Harvoni Train. Time to slay a Dragon.
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Hi Bilbo,

Thanks for the info, but some dates would help in communicatons (you are man of so few words!) a refreshingly concise kinda guy heehee.

So, I assume this is your latest (pre-thyroid treatment) TSH result (42.50), up from a prior TSH of 41.50. Thanks for the update.

The UND (you posted yesterday), was that the "6" week one, that you already told us of, or, another one you have now had done?? No date mentioned yesterday.

If you had basic dates in your signature line (such as ... 8 weeks of Harvoni, SOT May 8 (or May 15?), EOT Jun 26 (or Jul 3?) - we would then be able to figure it out, peice together some of the other missing bits of info, such as what dates (which post-treatment week) your first or second UNDs were drawn on . ie at 6 weeks or 12 weeks post-treatment. We want to know what day is your "official" post-treatment 12 week UND SVR party to mark!

Regardless, I am so pleased you have been so well cured, and I hope you and your docs will now, next, get this thyroid thing figured and controlled. Glad you have noticed some improvements (comparatively) in how you are feeling now, now that you are HCV-less and finished with that treatment.

Do keep us posted - we, of course, would always be interested to know more.  : )  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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THS 42.50 H range 0.30-5.0

 

Hepatitis C

 

(HCV), RT-pcr Quant ) 9:30

 

The Quantitative Range of this assay is15 IU/mL to 100 Mil

 

HCV Not Detected



__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Hey bilbo,

Nice to hear from you, and your update.

So, be patient with the thyroid therapy, they WILL try to get you back on an even keel, but sometimes it is a bit of an up and down adjustment period for a while when they first start these things. Should help if the ass-dragging is solely due to thryroid. Just make sure they go slow and careful with you until your get your dosing as right as it can be - be prepared to offer up your arms for as frequent bloods as they ask for, and as you can, (so you and they can all see how you are responding to thyroid therapy) aside from judging by how you are feeling.  

I hope it helps, it should - do you have any of those thryoid panel tests they did, to share?

Hey, wonderful if the tinnitus is from ear wax!!!!!!!!! Did it and the ear wax just disappear? They cleaned it out and no more tinnitus?

So, remind me again, why does it appear you had a EOT+6week blood draw, and what were the ALT/AST to go with that UND, and will you still get the EOT+12 week bloods?

Funny, we used to bame the cat for missing objects, moved things, glasses disappearing, chocolates bars gone, then she died, still happens, we figure a burglar or vandal, weird they would come over to your place and sleep? wink C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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So I went to my PCP today the Fatigue is probably Hypothyroidism like most of you deduced.  The Tinnitus is wax buildup since I wear Ear Plugs to bed.  Someone in the house snores and it isn't the cat.  I start Thyroid supplement treatment tomorrow. 



__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Welcome to the zero club! 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Bilbo,

Sorry I was a bit late for the party, just got back into town. Was on one of those medical toursim vacations.

Congrats on your hard won win!  

2 great big UNDS under your belt!! First UND at 4 weeks and now a EOT+6weeks UND. 

I hope you just continue to feel better and better.

Ya, I had the same question Tig did (often, they do bloods/VL) at EOT, but very most often we see them also done at EOT+12 weeks, and then again at EOT+24 weeks. EOT+12 weeks has been time frame most considered a "sustained" vrial response (SVR). But ... techinically, UND at EOT+6 weeks IS a SVR (but it has just been sustained for only 6 weeks versus 12 weeks) - it's just dif than when most people get a VL at EOT+12, to mark a EOT+12 week SVR, that's all. 

(If your EOT was about Jul 3, then for this 6 week VL, you must have had this blood draw about Aug 14? - is that right?).

Are you very sure they won't be doing another VL (after this EOT+6 week one), until 1 year from now? 

Being you responded SO wonderfully (with your first and early UND at only 4weeks, ALT nice and normal at 13, everything in your favour to win, a low F score, and pre-treatment load under 6 mil), and, as shown by being UND again at EOT+6 weeks, indeed you were an excellent candidate for ony 8 weeks of treatment. These conditions all bode well for nice sustained response, whether that be as early as EOT+6weeks, or 12/24 weeks or 1 year!

I am glad you will have your thyroid tests coming up next - hopefully we might see that has just vanished, all by itself! Maybe. I hope so. We'll see.

Do let us know how they find your throid now (now that you have been finished with the harvoni at least for a little while). Please do keep letting us know how you feel and how you are doing.

I am very happy for your EOT+6 week UND - looks good on ya!

What was your ALT and AST this time? C.

 

Image result for stylized letter U Related imageRelated image



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Congratulations! That's wonderful news. Why did they do a test at 6 weeks and not 12? I'm sure it will be the same, but the rule is to wait until EOT + 12 weeks to confirm SVR. The difference is miniscule so I wouldn't lose any sleep. 

The side effects from Harvoni should be gone by now. The fatigue and health issues related to HCV itself may take awhile. The improvements are going to come but people are always excited and hopeful they will get immediate relief. I wish I could say you will, but it took me an entire year to start to feel somewhat normal again. It'll come, but on it's schedule, not yours, unfortunately. Don't be discouraged though, the hard part is over, let the healing begin. You can help it out by living a healthy life, eating right and planning what you'll do with that new Hep C free liver!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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So I just had my 6 week post Blood test Not detectable.  Yeah  He wants to see me in a year because he dose not expect any changes.  Yeah.   I am still somewhat fatigued and still have some tinnitus. I am getting my brain less foggy and my dexterity is coming back.  I am seeing my PCT next week since my thyroid levels are still high. When do the side effects end?



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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Ah Bilbo,

A no nonsense man of few words, so succinct, concise, to the point. I aspire to be like you.

All in two words ... "I'm done"!

Surely, you could have splurged and wasted a few more like ... " yay, yipee, wow, yes I DID do a great job, didn't I!!" ?

Never mind, we'll take care of that!

CONGRATS!!!! I am SOOOO happy you are finished!!!! Now, I highly reccommend a happy dance, I've been practising a few of these moves just for occasions like these. biggrin wink C. 

https://www.youtube.com/watch?v=CNI7c9n4HJ8&list=RDV9Xm82IleF8&index=5

 

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Bilbo626 wrote:

I took my last pill last night I'm Done


 Congrats Brother!

I would like to comment further on the accuracy of the HCV RNA Test.

Personally I feel this is where the "Sustained" aspect of SVR comes into play. 12 weeks from last night, (84 days from now) you will take another blood draw. When that one comes back UND that will establish a Sustained response to treatment allowing the Medical Records to reflect Cured.

I believe they will continue to drop the time required EOT to Cure =?

The incredible short life of the Virus is to me the obvious key. You can only be <12 for so long and then it is impossible for the virus to reemerge. The Dragon quickly replicates or it ceases to be.

Have you ever wondered how the Dragon stalks us?

  http://www.epidemic.org/theFacts/hepatitisC/lifeCycle/

To me this is a fascinating short read. I am one of those, "if you are going to do something TO me, I am going to study you." Kind of guys.

In my Home The Dragon is Dead. You know if I were to say... "the dragon was mortified." Most folks would think, the Dragon was thoroughly embarrassed. That is kind of how we use the term today. The term is used to signify shame.

no Nope.

It means "To Kill". Just play with the term mortal a bit and it becomes clear.

I am not seeing folks that are UND at EOT having a relapse on Harvoni. Further I would even be so bold as to say those folks that are UND at SOT = 4 weeks have MORTIFIED the Dragon, provided they continue the mop up to EOT.

At any rate it does not matter what I say. You are going to second guess things for the next 12 weeks. Trust me and remember I said this... We all did the same thing. wink

 

Again, Congrats.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I took my last pill last night I'm Done



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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Generally hep "tests" are very accurate, but there are dif "hep" tests, just "initial" antibody detection, and/or "qualitative" and "quantitative" tests. There can be situations/conditions where antibodies might not be detected, at first, when your disease is in "progress", or in transit (so to speak). In hep c testing, if you show a pos antibody test, you can count on it being accurate, that they have found the c antibody in you, then the only question left is whether you have chronic hep c, or, whether you beat the infection off by yourself in the past. (Someone will still show pos for hep c antibodies after they are cured with hep c drugs, or if they were one of the lucky ones and successfully defeated their hep c infection all by themsleves.) A "first" positive hep c antibody test then requires further testing, usually the PCR (RNA) "quantitative" test (your VL) to confirm whether an infection is active or not. It's "complicated" to explain.

(In general, in my book, it is not unwise/unreasonable to "re-test" when ANY blood test (not just hep c) is "questionable" as a pos or a neg, or not the expected result, appearing too high, too low; false pos's and false neg's can and do occur in varoius lab tests, or may "appear" that way, sometimes for a myriad of reasons! - so, in some cases, repeat testing although it may be expensive, inconvenient or redundant, can be helpful info. The adages apply ... can't count chickens before they hatch; measure twice, cut once; the safer than sorry rule of being surer about things.)

It would help to know what kind of first test you had (that was "neg") and the second test you had that was pos (after your heart procedures) and the timelines of same.

What were all your heart procedures (over time)? Just being nosey, as I can't really recall you mentioned much of this before.

Great your family doc (or hep doc?) has ordered your fuller thyroid panel, you are right, you and he may just need to follow this well, test and wait and see what is found and what is required in response. Like Tig, maybe your thyroid blood work will just right itself, by itself?

How's it going today? Are you trying to get more time off, for more rest?? Hint, nudge. I am thinking you are not getting enough time off to do nothing, smell the roses, or to savour that UND! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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My Doctor ordered a full thyroid panel TSH, free T3, free T4, reverse T3, thyroid antibodies and thyroglobulin antibodies. I wont take action until I'm off Harvoni. From what I've read, Some people have had their thyroid effected by treatment only to go back to normal after.  Regarding The HCV test how definitive does that show? I remember after my third heart surgery when they suspected this the first test came back undetected then they did a second more comprehensive test that found it?



__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Bilbo,

Don't fret (yet) about your thyroid test! Yes, convey the thyroid test result (and ALL your lab results) to your family doc (like the hep doc said to). Your family doc will probably order you a "repeat" TSH blood test, and, likely (I hope) some other thyroid blood tests as well. Your family doc may order these right away, or, he may wait, until you have finished with your HCV treatment first.

It could just be a one-off, who knows, but it should be checked out further, and repeatedly to see if any abnomalities persist. It's possible your thyroid system could be sputtering about in defense of itself, reacting to demands, but it should be established if this is indeed continuing, to what degree, and why, to suss what exactly is wrong, if the bloods continue to indicate something is out of wack. 

If it was me, yes I would definitely want a "repeat" TSH, after I had been finished with the HCV treatment, but along with the TSH I would definitely also want the "whole panel" of thryoid tests (more telling) - there are (at least) 6 further parts to a whole "thyroid panel" ... TSH, free T3, free T4, reverse T3, thyroid antibodies and thyroglobulin antibodies.

You wrote ... "THS 41.50, H, range .30 - 5.0",  (I am assuming typo?, and you mean TSH). My book lists a similar "normal reference range" for TSH, .40 - 5.0 mU/L.

If your family doc does not want to do a "full panel", or, if he is not comfortable dealing with endocrine/thyroid work-up things, then get him to refer you to a thyroid specialist. Endocrinologists do this kind of assessing and work-up in their sleep.

It could just disappear! But, maybe not, so, I would have it checked out, thoroughly AND repeatedly, to be sure it is out-of-wack. There's always something, eh! Just keep relishing that big ole UND! biggrin (BTW - what were some of your pre-treatment ALT/AST's to compare to? These ones below are sure lookin' mighty fine!) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Test Results Hepatic function panel, CBc w/diff, TSH, Uric Acid. 

White Blood Cell 6.1

Red 4.4

Hemoglobin 13.4

Hematocrit 41.5

Mcv 94

mch 30

mchc 32

Platelets 198

mpv 9.5L

Rdw-cv 15

Neutrophils 53

lymphocytes 35

Monocytes 10

Eosinophilis 2

Basophilis 0

Neutrtropil count 3.3

Lymphocyte count 2.2

Eosinophil count 0.1

Basophil Count 0.0

Uric Acid 6.2

Hepatic Function panel

Total Protein 6.6 

Albumin 4.5

AST (SGOT) 23

ALT (sgpt)13

Alkaline Phos 68

Total Bilirubin 0.8

Direct Bilirubin <0.2

TSH 41.50 H range 0.30-5.0

Hepatitis C

(HCV), RT-pcr Quant ) 9:30

The Quantitative Range of this assay is15 IU/mL to 100 Mil

HCV Not Detected



-- Edited by Bilbo626 on Thursday 15th of June 2017 09:44:56 AM



-- Edited by Bilbo626 on Thursday 15th of June 2017 09:46:55 AM

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Greetings,

I was all set for 24 weeks and at 12 they cut me off. In retrospect I am glad they did. The 12 cured me.

The 8 week course is very effective.

Yes contact the Doctor. He will decide if there are reasons to push for the 12 weeks.

Best of luck and NO Worries.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

Tig


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You can try for an additional 4, and as Canuck mentioned, 8 weeks of treatment, with your pre treatment history, fit the current guidelines exactly. They have actually been working on reducing the length of treatment even further. 6 weeks has shown some spotty promise in trials, but the rates of success at 8 and 12 weeks are much better. 

In this day of bean counting, they are doing everything in their power to reduce costs. With your Hx and fast response to treatment, 8 weeks should do it though. Call your doctor and see if they discussed this before or after the initial treatment decision was made. If your doctor has any supporting evidence for 12 weeks, s/he will have to provide it to your insurance provider. Appeals can be drawn out, so get on it if you plan to submit one. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hmm, I wondered if this was going to happen - 8 weeks versus 12 weeks.

You can try to ask your doc about the need for 12 weeks, but all of them (insur and doc), may deem an early crash in ALT with an UND at week 4, in a person with a low Fscore (no cirrhosis) and a VL under 6 million, may mean to them, that 8 weeks is a sufficient course length.

I cannot recall which test gave you your prior Fscore of F1, nor what your pre-treatment ALT's were (for comparative purposes), nor can I recall any ALT's during your first 4 weeks, to be able to "see" your ALT crash, but, your VL at 2.8 mil pre-treatment, now down to UND! at week 4, is definitely a nice early crash! Just what everyone wants to see.

8 week therapies work perfectly for many people. Many people, that fit the parameters, are routinely treated with 8 weeks of Harvoni and are perfectly cured. Bonus happens to be a short treatment time. 8 weeks versus 12 weeks is a decision only your doc can make.

Savour your nice early UND! biggrin I would ask, but you may not have any luck getting them to agree you need 4 more weeks. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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I received a phone call today from my insurance today saying they only approved me for only 8 weeks should i call my doctor and fight for another month?

 



__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Bilbo!,

The sound of your VL (and probably your ALT), crashing! - https://www.youtube.com/watch?v=p-U4p3r48BU, and, the sound we are all making for you, in response!  biggrin  heehee  https://www.youtube.com/watch?v=Jd-22sVAryY

Congrats on a very hard won and a very well-deserved Und! C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Congratulations of your first undetected viral load! It will be that way from now on, too. Once undetected, the odds of it ever relapsing is quite low. Stay on it and keep doing what you're doing, it's working!

There are reports on the web from others that experienced thyroid abnormalities on Harvoni, but the overall percentage of patients is pretty low. You can find reports of HCV drugs causing all sorts of maladies and side effects, and I'm not going to deny it happens to some, but endocrine problems aren't widely recognized as a stand out problem. I had some Thyroid trouble when I was on treatment, a lot of us did. It was common to experience those problems on the Interferon protocols. The doctors were aware of it and monitored it throughout treatment. They also felt that once I finished treatment and recovered, it would return to normal and it did.

If you look for complaints on any drug regimen, you're going to find it. Just watch an hour of TV and you'll hear enough to wonder how Big Pharm gets anything approved! It's that CYA thing... If you search for negative keywords, you'll find references to people that had issues on anything and everything.

The one thing to remember is, the percentage of people on treatment that experience a serious adverse reaction, is low. If we search for good reports on a drug's effectiveness, you'll find lots of those too. I wouldn't be worried about anything. Finish treatment, and allow yourself time to recover. Let your doctors keep your thyroid function monitored, you concentrate on killing that Dragon. It takes time, but destroying this virus will bring improvements in many areas and is far better than not treating it at all. JMHO...

When I hear of someone avoiding treatment in hopes of the next best wonder drug, I remember thinking the same thing, what if something better comes along. I didn't want to wait any longer and neither did my doctor. It was time. They R&D these drugs for years and then when they release them, someone has a negative experience and right away the rumors start. Some people are going to have problems, it's reality. For every 5 people that have a problem, 95 didn't. I would've preferred these new drugs to Interferon, anyday. Interferon did cause me long term problems, but my liver is doing nicely! I'm recovering slowly and that's better than having that virus continuing to destroy the rest of me on it's terms. smile



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Well I called my Doctor they said my thyroid levels are off and I might want to get my Primary care doctor to look at it. They also said my viral load is undetectable.  



__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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Hey Tim,

Dude, you've been having nothing but trouble with Walgreens! I have had my problems with my local Rx too. They do their best to put you in a head lock and make you dance to their tune. I quit going there after the pharmacist starting berating me in front of a lobby full of people. I know times are tough, but the cost and profits made by some of these businesses, especially Big Pharm, leads me to believe they're probably doing better than most... 

Ask your doctor if they provide a patient portal for your lab results. I ran into the same problem with Quest. They have one, but your doctor has to either set it up for you or provide a PIN number to access the files. Your doctor or nurse can sometimes sign approval on the original request form. Then they just mail you one if the online portal isn't available. It's an unnecessary obstacle IMO, but some doctors want to deliver the news first. Seems fair, as long as they do it immediately upon receipt. Share the results when you can.

Congrats on bottle #2! Sorry about the reason for your work tardiness though. Better late than the consequences of not paying heed to the rumble in the nether regions... wink 

Good luck this week! Make sure you carry your sword with you when you strap on the armor! Let them know you mean business...



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Week 5 is done.  I was late for work twice since I had to run back in the house to hit the bathroom.  Hmm I wonder if that's why bathroom has a Black Eyeconfuse.  Yesterday we received a nasty-gram from our insurance company telling us that they would not pay for anymore specialty medication from a local Pharmacy only from Cigna's mail order pharmacy.  I called them and explained what happened.  The specialty pharmacy rep explained that when Walgreen's gets approval to fill it locally The Insurance company is in effect purchasing this Drug for you and you just pay the copay. This is why Walgreen's is being so grabby. It is loosing $10k-$15k in profit each refill.  I tried to get the testing lab to send me the results of Mondays test. They told me they could only release the results to a Doctors office any doctors office.  So I said let me get this straight, you can only release my test results on my blood to somebody other than me? Yes Sir that is correct.  So this week I get to put on my armor and get my test results from my doctor and tell Walgreens to back the hell off and  any refills of this prescription.



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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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I Just took the first pill of my second bottle. Blood test this week. Hepatic function panel, CBc w/diff, TSH, Uric Acid.

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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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Bilbo,

Gotta hand it to ya, you can sure muster through things, no matter how you are feeling! - you are doing so well, under trying times - especially noteworthy is your abilty to push yourself to work like you are - I have a feeling your business is VERY busy, and you are VERY motivated/dedicated to it? 

 ... "Wednesday was terrible. It seemed like everything inside wanted to exit as quickly as possible. My head and body and skin hurt. I Still had to go to work" ... 

Just because you have been able to keep working like you are, doesn't mean you should be pushing yourself this much. Is there not SOME way, some staff, something you can orchestrate, that will alow you a bit more "down time" at home.

It is good you are cooperating with the "program" showing up for all these time-consuming bloods, etc., but I am not sure (at all) that your "rest" factor is really being addressed - please think about it - how you could get a bit more rest in.

Not only did I have to go for VERY frequent bloods, (a very strict trial schedule) on that same day, I had to be examined by the doc and have other tests done, EVERYTIME! It was an "all day" event (the bloodletting and doc exam/appointment day), a five hour drive one way and a motel stay overnight, 5 hour drive back home the next day! Now, mind you I am retired and had no real demands being made of me, so was easier for me than you.  

I am not at all surprized they want to physically see you at the docs office, in my book they should be asking you to come in for appointments!, for good thorough following. 

My lab results never seemed to come fast enough for me! Good you asked for your last labs, you will get them, and you will get these 4 week ones as well - persevere.

You are doing a fine job of dealing with it all, including getting through that horrendously long delay at the start. Keep mustering. I hope some of these symptoms start decreasing more and more now. And, i hope you can figure a way to get some more rest/time off even if this is a busy time. 

Ah, the lovely sound of only one or two pills rattling around inside a near-empty bottle! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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They want me to set an appointment with the doctor

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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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Just tell them you're smarter than their average patient and will wait while they prepare your copy. They can't deny you a copy, you paid for it and have a right to it. Perhaps they could educate their patients about the results, instead of keeping them wondering. That can be more stressful than anything. I have yet to see any of these new DAA's provide anything but promising and morale boosting test results. Regardless of the length into treatment!

Congrats on the end of bottle #1 smile 



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Update for the last week I have had little or no side effects other than mild headache and fatigue which seemed to for the most go away with water. I have found one sports drink a day helps with fatigue. I put a propel drink mix in my water at the beginning of the day and as I fill it up every half hour it just gets more diluted. It helps refills the electrolytes since I owe once or twice an hour. Wednesday was terrible. It seemed like everything inside wanted to exit as quickly as possible. My head and body and skin hurt. I Still had to go to work since my Garden center was still restocking from Memorial Day weekend. Today I called my doctor's office to find out my results from my blood draw they said they normally don't share the test results until my treatment is done. They said it confused people. Monday when I get my 4 week blood draw I will go demand a copy, Then check the little box on the blood draw paperwork to send me a copy of the results. Two more š pills in my first bottle.

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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You both realize you have been carrying on for an entire day, about getting or having been high. Do I need to be concerned? biggrin lol

Each day is a better day, make it so...

 



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Nice, when you get to day 20 or so, it's a special sound, that sound of only the last few remaining pills rattling around in a "near-empty" bottle isn't it? Accomplishment!

Then, the bolstering feeling, of that next nice brand-new shiny bottle of harvoni re-inforcement, "army in a bottle", at the ready and waiting to keep backing you up!

Aw, so nice when we have partners like that - she "smiling and nodding" whilst allowing you expressions of your harvoni high! My partner still does that for me!! But, nothing to do with drugs in my case today as to why I go on and on!

There were periods during treatment where I was as lively and as mobile as a one ton piece of lead, but the brain was sputterring around uselessly in some kind of frenetic-quality mis-firing overdrive - both at the same time - felt weird. But, my drugs were completely dif than yours, I have no idea what a harvoni high feels like. 

Won't be long now! - and you will get to go for your 4 week blood draw soon, and perhaps get your first bits of good news, even tho it is "early" days . Let us know BTW (when you know) what your last LFT's (ALT/AST) were, from your week 2 draw. 

Good job, Bilbo, yer killin'it! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Walgreens got the business they want it that bad they can have it. I might write corporate when this is done. Putting in a prescription that I didn't need to test the insurance is fraud.

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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I guess my mind is going south on me. I see where you started now, so what happened with the two pharmacies? You must've gotten one bottle before they started battling for your business. I'm easily lost... 

You're going to have those weird moments sometimes. Seems all of these drugs, even the stuff I took, would make me speedy one day and a slow mess the next. I think you're getting this under control. 2-3 weeks is about average. Good job!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Just took day 20. 64 to go

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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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On the plus side today's side effects were just some sneezing and fatigue. But my wife says the Harvoni High kicks in and I start talking a nonstop monologue of what happened in my day. Every detail. She just sits there smiling and nodding. So I think I have crested the hill and my body has just given into having this in my system.

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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Alright, you're good to go! When do you drop the first Nuke? Get hydrated well beforehand and keep it up!  



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Oh I agree.

Let them work the politics.

We have Dragons to whoop.

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Well I received the meds at 8 this morning. They can mess around all they want. I think something shady is going on. But at this point I don't care. I think it is about the money. I just need one more bottle and then Smaug is dead and Harvoni is my ring of power. Then Harvoni will help me throw Hepatitis C into the crack of mount doom.

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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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The Specialty Pharmacy will ship in a cooled container and of course require a signature.

That the motivation is money is beyond debate. If you run in to trouble a Specialty Pharmacy is by far a better advocate.

Generally speaking, a Specialty Pharmacy will arrange a brief interview prior to each shipment.

It looks like both are on board for a 12 week course.

From what you are saying here Wall-greens seems a bit unprofessional.

There is little profit with a pharmacy in dispensing drugs, but there is a profit. The cost to fill and dispense remains fairly level regardless of if it is a $5 prescription or a $50 one.

Wall-Greens likely buys direct from Gilead and they would pay a wholesale price while charging Insurance the retail rate.

Given the retail cost, the profit margin of filling an 84 pill count of Harvoni purchased at wholesale prices is certainly far greater than an 84 pill count of Amoxicillin as an example only designed to create thought.

Of course they want to fill the prescription. Math.

 

JimmyK

 



-- Edited by JimmyK on Friday 26th of May 2017 02:53:11 PM

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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Yep, hard to say is right! Clear as mud. 8 weeks or 12 weeks. Walgreen or specialty pharmacy. $5.00/$30.00/or $0 co-pay. I wouldn't have a clue who to go with or who would be better? Hate to cancel the guys, whichever ones they were, (who you think) are the ones saying they are going to give you 12 weeks versus 8 weeks - neither has that shoe seemingly landed (whether "approved for 12" may not necessarily mean you will indeed get 12, if 8 looks like it is curing you well). Sorry, beyond me, I can be of no help here. confuse C.



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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It's hard to say what their motivation is, but I'd venture to guess it's money. Contact your insurance company and doctor's office. Tell them what's going on and don't sign for the delivery. Your doctor obviously called Walgreens, tell them to un-call them! Cancel the order, but be sure the specialty pharmacy is indeed sending the Rx.

These are deliveries that must be signed for. If they leave a $32K bottle of Harvoni in your mailbox or front porch, somebody isn't doing their job. 



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61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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So I received an e-mail from the Walgreens that my doctor sent my prescription to today saying my Harvoni was ready and I could pickup my Harvoni at the Walgreens for a copay of $30. The last time I talked to my insurance company they said that Harvoni is a special medication and only could be filled locally for the first prescription because of the strong instance of fraud. All refills must go through Cigna mail delivery pharmacy. So I had Cigna them fill the first prescription, they told me I had 2 refills for a total of 12 weeks and since I had my Harvoni coupon the cost would be $5. Walgreens said I would have 1 refill for a total of 8 weeks. For those of you who came in late. Walgreens is the same Pharmacists that tried to test my insurance by putting in a prescription for amoxicillin which wasnt percribed to see if my. Insurance it would work. They put on that terrible class that told us that the cure rate was now 90%. As well as describing the side effects of Ribovin as wishing you could die. So I called Cigna and asked what was up. They said they would call Walgreens and rescind the approval because it was against their policy and I didn't trust them. Then I get a phone call from Walgreens saying they already shipped my meds to my house. I saidI thought I needed to pick it up? I said I wanted Cigna to send it because that was their policy and I didn't want to pay $30 when I could pay $5. They said they got a foundation to cover the costs so the copay would be $0. I said I didn't apply for any foundation grants nor do I need them use that money on someone who doesn't have insurance or needs the support more than I did. They then told me it was already mailed. They then told me they misinformed me and I had 2 refills coming the second would be sent in another 30 days. This one will also be zero copay. Am I being paranoid or is something going on here. Is this fraud greed or incompetence?

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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So I received an e-mail from the Walgreens that my doctor sent my prescription to today saying my Harvoni was ready and I could pickup my Harvoni at the Walgreens for a copay of $30. The last time I talked to my insurance company they said that Harvoni is a special medication and only could be filled locally for the first prescription because of the strong instance of fraud all refills must go through Cigna mail delivery pharmacy. So I had them fill the first prescription, they told me I had 2 refills for a total

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1



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This is turning out a bit harder than you thought eh? Carrying this big "to-do" list around with you constantly, whilst running your biz full-time! 

I am impressed with your juggling act! 

Carry a gal of water, imodium, spare underwear, ibuprofen, box of kleenex for runny nose, leave a trail of gingerbread cookie crumbs whereever you go, to mark your trails between home/work/and frequent loo and lab vists, do not sneeze in your red rubber nose entertaining children, nor during labs when trying to hold in bladder and bowels.

I anxiously await your 2 week lab results too - maybe you will already start to see a wee early drop in your ALT/AST, but betting you will, by the 4 week one!

Your doing a great job (all round) Bilbo! Keep doing it. (And, oh don't I like men who are not afraid of a kitchen!) Try to get some good rest in too tho. Water! biggrin C.  



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Great post Bilbo. I'm laughing and envious from the rush you had as I never had a high from the harvoni. Damn recovering folk always looking for that!



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

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I had to laugh about your note to the wife! Forgive me no  I can see you sitting (fidgeting) in your seat as you waited on your lab tests. All I can offer is this sound bit of advice, don't fart and always recon the nearest bathroom. 

Let us know about the tests when you hear something. You're coming up on week 4 and those tests will be amazing. I'm sure of that!

WATER, WATER, WATER!!!

 



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Well here I am day 18. It has been a wild ride. The side effects have been strange. It's like wheel of fortune. I will have one or two a day but they all have been manageable thanks to ginger, ibuprofen, and Imodium. With the sneezing and running nose most people at work think I'm battling the world's longest cold. The worst was summed up by the text I sent to my wife on Monday "There's no greater joy than waiting to have a blood test with a full blatter and loose stools." The best was when I was feeling that burst of energy from the Harvoni High when I came home from work. I took out the garbage, sorted the recycling, washed all the dishes, scrubbed the kitchen counters and shelves, changed the š± litter, vacuumed. My wife came home and said. "So this would be a good day." Down side with a drippy nose I might not be able to wear my Red nose at work tomorrow for Red nose day. Yes I really do it makes the kids at the garden center happy. Looking forward to the results of my second blood test and getting my second bottle of Dragon slayer. Thanks for all the support you folks are the answer to a prayer.

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Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

Tig


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It's important to follow your doctor's orders. If you have explained the importance of your work schedule and the concern for bloodwork still holds the same value, then you know what the plan of the day is! 

There may be additional concerns that we aren't aware of, so my best answer is to always follow your doctor's advice. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi Bilbo,

I really would try VERY hard to have the bloods taken just like your doc suggests, on the timetable he laid out, they ARE very important these tests. (I know you have a lot of work demands, but health trumps all). These tests are the only things that can possibly guide you and your doc to know for certain the drugs are working as they should, that nothing else untoward is happening to you. Labs are very incovenient things to have to do all the time, but most people look forward to the relief in actually geting their first inklings (proof) that all is going to be OK, and that this big investment they have made into their health indeed seems to be paying off. You were lucky to receive a good amount of lab tests (some people are not as well looked after, as what was offered to you). They are the feedback that keeps you safe.

All of tests you listed (below) are important, (from your CBC's to your LFT's to the VL's) I would want them all and on time, week 2 will be very telling if your ALT/AST is begining to crash, week 4 is very important too to continue monitoring to look for an ALT/AST drop, and, to see if your VL is crashing yet. (For me) there is not one of them that I would not want know ASAP, so, I would do all of them, on time, if humanly possible, including week 8, week 12 (not yet defined).  

How are you feeling?? smile C.

Week 1 Diagnosis B18.2 Test CBC\ w Diff Baseline

Week 2 Diagnosis B18.2 Test CBC\ w Diff ,Hepatic Function Panel (AMA)

Week 4 Diagnosis B18.2 Test CBC\ w Diff ,Hepatic Function Panel (AMA),Hepatic c RNA, Quant RT PCR

That's all the Orders I have but I have been told I need Blood Tests at 8 and 12 weeks too I just don't know what.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 62 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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So the doctor kind of insinuated that I need to take the blood tests on exactly the anniversary that I started treatment. How critical is that so I need to take a half day of work to take these tests on time or say I started on a Monday and my day off is Tuesday or Wednesday. Could I take it then?

__________________

Harvoni 12 weeks

51yo Cont 1983 by Blood Trans Diag 2003

viral load test 2.8mil

Geno type 1A

TB Test Neg

Eye and Retna Norm

Liver function test. F1

ultrasound of my liver F1

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