Started Harvoni Today 8-25-2015

[Michael0543]

Hi,
I'm new to the forum. Been HIV+ since 1989. Doing well on HIV meds with undetectable viral load since the late 1990's and CD4 count averaging about 700. I was diagnosed with HCV June 2015. I'm pretty sure I caught it in December 2014. My liver enzymes were normal Nov 2014 and I tested HCV negative just a few months earlier. I started feeling sick the end of January 2015. It got progressively worse. When I saw my ID Specialist March 2015 my AST was 89 and ALT was 128. I was feeling horrible - no energy, brain fog, chest pains, joint pains, nausea. He ran a lot of tests but nothing showed up.  At the time he did not think it was HCV since he had tested for it Fall of 2014. In a followup visit in May 2015 he ran a Hep B and Hep C tests and the Hep C came back reactive in early June. He then ran the HCV RNA test and genotype test. The VL was 650,000 and genotype was 1a. At the next appointment in June, we had this discussion about it possibly clearing my system after 6 months and he wanted to wait a few more months to see if it would occur, but I was feeling so bad, I wanted to start treatment immediately. So he agreed since we concluded that I had contracted it in December and it was basically 6 months and I was not feeling better. He told me there would be pushback from the insurance company, but he sent the Rx in electronically to Optum Rx Specialty Pharmacy. My insurance is with United Healthcare. They approved 8 weeks of Harvoni within 2 days, but my doctor wanted to do 12 weeks. It took him a while to write the appeal letter which he sent on 8/6/15 and UHC approved the additional 4 weeks on 8/21. I immediately ordered Harvoni and it arrived today. I popped the first pill within minutes. I cannot wait to get my life back. The GI issues causing chest pains and the lack of energy has just taken my life away. This has been a far worse experience than HIV. I'm looking forward to better days.

[jjmurphy]

Hi Michael, my story is almost identical to yours. HIV+ for many years, and then I go and get HCV (2011) geno 1a. I started treatment in June of this year. I am on Viekira pak + ribavirin for 24 weeks. I agree, HCV is far, far worse then HIV. Like you I cant wait to get my life back. You must have a really good doctor, to push for 12 weeks instead of 8. I am from Ireland, and even though I have private health insurance, this type of treatment is not covered by any health policy. Luckily the government has stepped in to pay. I would much rather 12 weeks of your treatment, but beggars cant be choosers! I wish you the best on your treatment, regardless of the medication the general advice is to drink water, until it starts dripping out your ears! please let me know how your doing. Regards joe   

[gidget]

Hi Everyone!
I joined this group for "same soul support".  Today, Labor Day, is my first day to start my 12 wks of Harvoni.  I feel a little nervous due to the fact I have such a heavy work schedule and I hope I can continue working.  (No job..no med insurance.)  So a few questions for those who might know.  What time of day is suggested to take Harvoni?   And does it always raise blood pressure?  Mine is already an issue.  Another thing, to be honest...I still smoke cigarettes (5 to 10 a day) and I know I should quit, but that process stresses me beyond belief. 
Diagnosed > 20 yrs ago.  Type 1, Fibrosi,s 3 stage, close to a million viral load, 61 yrs, female, haven't drank alcohol in >15yrs.
Gidget

[jjmurphy]

Hi Gidget,
Good luck with the treatment. I am not on Harvoni but my blood pressure has risen way above normal on Viekira pak I think for me its an anxiety issue around the treatment. My doc is not in the slightest bit concerned, in fact I am banned from taking my own blood pressure! I know that we all have to drink loads of water, to get the toxins out, regardless of the meds. Your so right not to consider giving up smoking at this time. You need less anxiety at this time, not more. You can deal with the side issues like smoking, when the curtain comes down on hep c. This is a good site for support. keep in touch, I reckon I have had most of the side effects at one time. I am just finishing week 10 of 24

[gidget]

Thanks jjmurphy for replying!
I was not sure how and where to post.  If I have comments or questions OR just need a buddy, where should I post or did I do it right?  Thanks again for the contact!
-gidget

[KimInTheForest]

Hello Michael, Joe, & Gidget, and welcome to the forums and to the treatment journey! You are each, in all likelihood, on your way to being cured of HCV.

Just wanted to mention one thing about water and blood pressure… Yes, the advice here is generally to drink lots and lots of water to lessen side effects. Hydration seems to be particularly important for reducing headaches, if that's something you are having trouble with. HOWEVER, excessive water drinking can also wash away potassium and magnesium. (You pee it out.) Potassium is crucial for regulating blood pressure. A drop in potassium could result in higher bp. Also, low potassium and magnesium can result in muscle cramping (feet, calves, hands). A number of us on these forums experienced muscle cramping during treatment while flooding ourselves with water.

I would say at very least double down on foods that are high in potassium and magnesium if you are drinking lots of water and peeing more:

Best Foods for Potassium:

beans
dark leafy greens
potatoes (with skin)
sweet potatoes
squash
dried fruit
yogurt
tuna (fresh, frozen or tinned)
salmon/halibut/mackerel/turbot
avocados
mushrooms
bananas
tomato sauce
orange juice

Best Foods for Magnesium:

spinach /chard (cooked)
pumpkin seeds (very high!)
brazil nuts
sunflower seeds
almonds/cashews
salmon/halibut/mackerel/turbot
tuna
beans/lentils/brown rice
avocados
bananas
dried fruit
dark chocolate
potato (with skin)
cereals
cheese/yogurt

Good luck to all of you. And keep us posted on your progress!

kim

[jjmurphy]

Hi Gidget,
I think you can get involved in any thread that interests you, I have 14 weeks left compared to your 12 (sounds like early release from prison) so we may as well make the journey together. I am from Ireland. The one thing I know, if we all stay the course of treatment we have more then a fighting chance of success. Imagine no more watching every thing we eat drink etc. I don't know about you Gidget, but I have learned an awful lot about myself on this journey. 2 years ago, it looked like curtains for me, no treatment on the horizon that I could afford, but here I am today every chance of a fresh start. Hope you feel the same, from what I hear your side effects will be minimal on Harvoni. Failure is not an option! Joe

[jjmurphy]

Hi Kim,
Thank you for your reply, very good information. I am glad to say I eat most of the foods on both lists. Like the vast majority of us I have become very careful about what I eat and drink. That is one thing that will not change post treatment. Good luck and again thank you for taking the time to reply. Joe 

[gidget]

Thanks to Kim and to Joe.  Made me smile to see responses.  Love the nutrition list, kim.  Will stay in contact.  I really appreciate y'all!
gidget

[Rosie13]

Hi Michael,Joe,& Gidget! Need another buddy? I am on day 3 with Harvoni...so far so good.I fought for awhile too to get treated.In the US they seem to wait till someone's liver is worse (F4 or cirrosis )instead of treating everyone & eradicating the disease & future devastating financial outcomes .The insurance agreed to pay for 8 wks but the Dr. recommends 12 so we plan on looking at the blood work @_ 2 wks & 1st month to decide about starting appeals.Love Kim's food list ! My feelings about how the medication affects me is I take at noon & stay relaxed for a few hours.I feel fine after that & go on with my day.Some people have reported feeling fatigue in the 3rd week but we all are having different results so let me know how you all are feeling.So glad you all landed here ...

[jjmurphy]

Hi Rosie,
The more the merrier on this journey, I feel stronger if I know someone, somewhere is wishing me success and equally the same good wishes back from me to our buddy's. The only good thing I can say about hep c, is that it has made us all stronger people, otherwise we would not be here swapping side effect issues. We have all taken on and beaten Insurance companies, Government systems etc. That is before we have even started on the virus! I am on the Viekira pak with ribavirin. My side effects vary from day to day, my energy levels are up and down "like a fiddlers elbow" but nothing that is unbearable. It seems that most on Harvoni have an easier time with side effects, and I hope that will apply to you. Good luck on the journey. Remember we are free to moan, gripe, and be unreasonable, in fact anything that gets us to the finishing line is allowed. Joe 

[Rosie13]

Hey Joe, you may find some other good threads here on viekera pack & ribiviren helpful. The ribaviren seems to cause other forum members the most trouble. There still are some complaints with harvoni but it has been amazing to see the diverse way it affects people. I read where one person was still running every day. Wow  impressive!One of the best things about getting started is the fear goes away. You know what to expect & embrace the healing whatever it takes. I am keeping a journal too... day by day so I won't forget anything. After I am cured  8)I will stay here on the forum & chime in when someone new is scared like I was . Gnatty & Kim & Bree & Lynn have wisdom that goes beyond this disease...check out their posts if you can. Happy Tuesday!

[Michael0543]

Good news. I am feeling 100% better after being on Harvoni. My low energy, brain fog, bone pains, GI pains when I would eat, occasional night sweats, and hot flashes all went away on day 17 of taking Harvoni and it's only gotten better since. I have had no side effects from the Harvoni except occasional fatigue on some days. I had an appointment with my ID Specialist on 9/22/15 and he did labs. I finished the first 28 days of Harvoni on 9/21; two more bottles to go. He just sent me the results from my lab work. HCV virus is not detected and ALT 13 and AST 24. All other tests were within normal range also so I am happy that I'm on my way to full recovery.  I wish all of you the best with your challenges with insurance companies, side effects, and your road to recovery. My next doctor's appointment is 11/17/15, one day after I finish the Harvoni.

[KimInTheForest]

Good news. I am feeling 100% better after being on Harvoni. My low energy, brain fog, bone pains, GI pains when I would eat, occasional night sweats, and hot flashes all went away on day 17 of taking Harvoni and it's only gotten better since. I have had no side effects from the Harvoni except occasional fatigue on some days. I had an appointment with my ID Specialist on 9/22/15 and he did labs. I finished the first 28 days of Harvoni on 9/21; two more bottles to go. He just sent me the results from my lab work. HCV virus is not detected and ALT 13 and AST 24. All other tests were within normal range also so I am happy that I'm on my way to full recovery.  I wish all of you the best with your challenges with insurance companies, side effects, and your road to recovery. My next doctor's appointment is 11/17/15, one day after I finish the Harvoni.

Great news Michael!! Congrats on reaching undetected! You are on your way.

kim

[Rosie13]

Fantastic Michael0543!!!!!you are having a smooth ride ...obviously doing everything right.I am on day 20 its been pretty good so far..lets hope we stay this way!