Thanks for the good wishes!!

Congrat's to your hubby!!!  Thrilled for him and you.  Here's to your husband's SVR12...

Thank you for sharing the good news, Pl1952!   He has passed the first milestone and it is a big one.  You must both be very happy about this.  

congrats!!

We just got the good word today that hubby is UND 4 weeks EOT!!  Grateful, excited, thankful...Onward march to 12 weeks EOT!!!  Wanted to share the good news with everyone!

Dang you are smooth!!!

The Granddaughter thing just made my weekend!!!!!!!! Thank you !

Duane

Dzdayscomin wrote:

---

I'm wondering if these maladies will slowly diminish? so far that has not been my experience.....I do have ESLD so it maybe that it's not so much the virus but the damaged liver that sets off the other conditions

---

I truly believe that once you attain SVR these symptoms will gradually improve.  No, we won't feel like 25 year olds because we aren't 25 year olds.  But, the virus itself is probably causing a lot of this.  Many people who don't have severe liver disease do have significant extrahepatic symptoms.  

SVR will also stop the hepc caused liver damage and it is possible for even a damaged liver to do some self-repairing.  Just give it time, Dzdayscomin.  

If I wasn't certain that this outcome is probable I might not even bother with the tx at all but SVR can and does improve quality of life.  The trick is to use a tx that doesn't do much damage and we seem to be making great strides in that direction. 

Heck, if we live long enough, we will be able to improve our liver fibrosis with medicine and at some point people will just grow another liver when the old one gets too bad. 

Hang in there.  Life is tough but so are you!  I'm thinking back to a few weeks ago when you were enjoying that time with your granddaughter and that is the image I'm holding onto of your future.  

Thanks for the links Maddie,

I most definitely have at least one or more of those, the one that sounded closest was the morning pain, joint pain and general all over pain...now being i am UND at least as of 6/12/14 I'm wondering if these maladies will slowly diminish? so far that has not been my experience.....I do have ESLD so it maybe that it's not so much the virus but the damaged liver that sets off the other conditions, that first link reads like my list of problems, Thrombocytopenia, probably have FM and or PN and FORE SURE the cold sensitivity, the thing is there just doesn't seem to be much they can do to treat the problems with out further damage to the liver...a vicious cycle for sure....

Oh well poor me I guess...life's tough!

Pep wrote:

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My Rheumatologist feels hep c is causing my joint inflammation. It is called an "Extrahepatic manifestation, Cryoglobulinemia" . That is why she routinely checks for hep c on new patients. Google it and find studies.  My Gastroenterologist does not agree with her theory, in my case anyway. 

---

 Hi Pep:

My understanding is that Cryoglobulinemia is a blood disorder that can cause inflammation of the blood vessels throughout the body.  It is definitely linked to hepc and it is often found in people who have autoimmune disorders as well.  Muscular inflammation and joint pain seem to be connected to the hepc virus as well, but I would be careful about treating any inflammation with Corticosteroids or NASIDs,  because these drugs are not good for hepc patients as you probably already know. 

I recently saw a Rheumatologist because I have a positive elevated ANA titer.  My PCP thought it a good idea to rule out any autoimmune disorders even though positive ANA titers are not unusual in hepc c sufferers.  

The Rheumatologist said she was 80% sure I have no specific autoimmune diseases and whatever inflammation I have is probably caused by the hepc virus.  My hepatologist and PCP agree so that is good enough for me.  I expect to see some improvement in this area once I attain SVR and I expect you will too. 

Duane in the HCSP Fact Sheet on extrahepatic manifestations of HCV, arthralgia, fibromyalgia,and cryoglobulinemia are listed among other maladies.  Here is the link  http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

http://www.rehab.research.va.gov/jour/07/44/2/pdf/silberbogen.pdf is an article about pain in veterans with hep c.

My Rheumatologist feels hep c is causing my joint inflammation. It is called an "Extrahepatic manifestation, Cryoglobulinemia" . That is why she routinely checks for hep c on new patients. Google it and find studies.  My Gastroenterologist does not agree with her theory, in my case anyway. 

Hi Pep,

Welcome to the forum, I'm glad you're here! You picked a great time to treat, the new protocols are incredibly effective. Sounds like you could've been exposed either by the needle stick or the transfusions, doesn't matter really. What matters is this great opportunity to finally treat with a protocol that offers minimal side effects and maximum effectiveness. 

As you're aware, be cautious in the sun. Even protected exposure outside can cause problems. I've witnessed heat related problems, so do your best to limit outside time during the times sun exposure is highest. I believe it's very important to keep yourself well hydrated anytime you're going to be outside, as well as keeping yourself well hydrated anyway! It will help the headaches that seem to be one of the most commented on side effects. 

If you're interested, go into your profile section and add a brief explanation in your signature section regarding your genotype, tx protocol and any info that comes to mind. It helps when replying to posts and knowing what treatment you're on, viral load, etc. and some of your history. You'll see many of us have done that and it follows all of your posts. I look forward to hearing all your good news! Good luck...

Tig

Hmmm another link to joint pain in people with Hep C and/or Liver disease, are there any real studies that connect these two things?

I am convinced they are related, but don't have a clue what the mechanism tying them together is? Everybody seems to have some indication of joint pain in long term exposure to the Hep C virus.

Any of the smart people here care to share some knowledge on this? and if they do know is there anything that can reduce the discomfort??

Thanks,

Duane

I am 58 years old, have genotype 1.  I found the hep c when liver studies were done prior to starting treatment for inflammatory joint disease. God bless my Rheumatologist. I have never had elevated enzymes or bilirubin. I am guessing I have had the virus since early 80's. I got 6 units of blood after an accident in 1984. I am a nurse and had a needle stick from a patient that may have  had HepC before that.   Who knows?  

My liver biopsy two years ago revealed stage 1 liver disease. 

Welcome, love to hear more about it. Can you tell us what type and how long you've had it? There are some super smart supportive people here that can really help you understand what is happening to your body pre tx during and after, welcome !

Duane

I started Sovaldi/Olysio 12 week treatment 3 days ago. I am feeling great. Waited 2 years for an interferon free treatment. Between my health insurance and assistance from the drug companies my cost is $30.00 out of pocket each month.  This is such a blessing.  My feeling of "Impending Doom" is beginning to subside. My first follow up lab will be 4 weeks after starting the treatment.

I spend a lot of time outdoors. Concerned about the need to stay out of the Sun. Applying generous amounts of Sun screen and limiting time in the Sun. That is so much easier to deal with than the Ribaviran rash. 

Pep

Yes, sugar is the enemy -- I started a low-glycemic diet shortly after I was diagnosed with HCV & kept it up for the 2 years until I started SO treatment, carried it on throughout tx, still do it now 2 (UND) months after end of TX. My sense is to keep it going for life -- it is indeed insuline toxicity that is the greatest enemy (after or with the virus) of liver health. (A month or so ago I posted details of my low glycemic diet on this list for those who are interested).

Pierre

interesting Huey.  Maybe that's why they are so diligent about checking my blood sugar.  I though it was because my mom was diabetic,...mom was obese her entire life....im 60 and have never hd any problems with my blood sugar.

now I'm thinking you are on to something,  hummm

Marypetrecz wrote:

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Hey...I just saw my doc.  I have 3 and a half weeks of the S/O......I won't be seeing them for 6 months.  I have to finish the meds....then blood work....followed by 12 week bloodwork....followed by a doc visit and 6 month bloodwork.

i guess I'm finished,  it feels so uneventful.  I think there should be a party or something,,,.wow...a year ago, I never thought this would happen,,.....

i did talk to her about relapse..and she looked at me over her glasses.....she said it's always possible, but don't worry about it,,,,,I cleared early..my bloodwork is all good,,,,I have nothing to worry about....I do believe her,,...if I relapse, I'd be surprised but I know they are always here for me,,,,,...so no worries.

---

 I have a hypothesis about this,, I think  you can detect a relapse coming on just by checking your sugar.  I don't have proof but I think when or If  the virus comes back, your sugar spikes .  If you just check your blood sugar like a diabetic does and if you don't see a significant spike that goes out of range for your body mass index, "usually above 110", your good,  But if it does spike get in-touch with your Dr and talk to them about getting back on tx.  I do not have proof but I really think you can preempt a relapse just by watching your blood glucose level.

Hey...I just saw my doc.  I have 3 and a half weeks of the S/O......I won't be seeing them for 6 months.  I have to finish the meds....then blood work....followed by 12 week bloodwork....followed by a doc visit and 6 month bloodwork.

i guess I'm finished,  it feels so uneventful.  I think there should be a party or something,,,.wow...a year ago, I never thought this would happen,,.....

i did talk to her about relapse..and she looked at me over her glasses.....she said it's always possible, but don't worry about it,,,,,I cleared early..my bloodwork is all good,,,,I have nothing to worry about....I do believe her,,...if I relapse, I'd be surprised but I know they are always here for me,,,,,...so no worries.

I went to the doctor about my back yesterday.  He does not think the backache has anything to do with the Sovaldi/Oysio.  I don't think the Solvaldi/Olysio caused the issue, but I do wonder whether they contribute by making the muscles more likely to spasm.

The doctor thinks the backache is just muscular.  He prescribed a pain killer, something to reduce swelling, and something to relax the muscles.  Between that and the Sovaldi/Oysio and my blood pressure medicine, I think I could open my own pharmacy!

I am taking the rest of the week off from work.  The pain killer has me foggy enough that wouldn't be productive anyway. 

I'll keep you posted.

Thanks!

Hi, Tom.

Is your back any better, or has it gotten worse? You'd better go see your doctor, or go to an urgent care unit somewhere, don't you think?

And please let us know how it turns out, okay?

Mike 

I am 6 weeks post tx on S/O and that is my biggest complaint..... the arthritic feeling in all my joints, but honestly I think it's more to do with the just having liver disease ( De-compensated Cirrhosis ) and not the tx we probably just start to realize all the other problems we have once our minds are off the fact we no longer have the virus causing the other problems that we had going on pre tx.

I think sometimes I'm looking for a utopian physical feeling, like we had as kids that unfortunately does not appear to be very attainable with age, and having suffered so much damage over the past three decades, it seems the more exercise and physical activity I do to improve things, the worse I feel and then prevents me from wanting to keep that pain cycle going.

And I'm not talking I tried 1 day and it hurt so I'm not trying any more, I'm talking about a routine of stretching , followed by light exercise activities followed by more strenuous physical work over the past 6 weeks and although my mind feels great and ready to go, the body objects to this, and shows me in many ways, be it it cramps, severe joint pain, back pain etc... so maybe there is something else going on causing this, or maybe a case of it took 30 yrs to get like this, it may take many to recover if ever.

I am 6'1" 200lb (that's up 22lbs from 8 months ago) no diabetes, or any other medical problem known except cirrhosis, portal hypertension, and splenomegaly, edema, and acites(That's all) lol..so as type this I'm thinking yeah can't figure out why i hurt in my joints back legs etc.. couldn't be any of that stuff now could it ?

Anyway once I get past my Aug 26 12 weeks post tx test and I am SVR ( positive thinking) I can then go after some of this other stuff if my liver function has improved......maybe I just have arthritis ??

I started taking Sovaldi/Olysio on Monday. 

Generally, it is all good.  But yesterday I started having pain in my lower back.  Today it is much worse.  I am even having trouble walking.  I can't tell whether it is just pulled muscles or something worse.    

I have no idea whether it is related to the meds or just a coincidence.

Hi, Caryn

my medication was delivered and left on the front porch and sat in the direct sun

I would have freaked out.

I stayed und while taking my overheated medication

Maybe what they say about Sovaldi being impervious to heat is true, then. But it's hard to believe.

Mike

Hi, Huey. Thanks for the insights.

The pharmacy packed this second bottle themselves, in a temp-controlled cooler, and they're shipping it by UPS overnight/early-AM-delivery, to make up for their negligence with the first bottle, which spent an entire day at around 120 F on a truck.

I'm worried about storage temperature as well as shipping. The bottle and the Patient Information fact sheets say to store below 86 F. But in the New York summer my apartment gets up to 90 and above. I'm keeping all meds now in my bedroom, where I have a small air-conditioning unit, but it's not on 24/7.

People at Gilead Support Path told me that Sovaldi can withstand up to 120 F. without losing potency, but I'm still worried. I'm tempted to put the Sovaldi and Olysio in the fridge, but the pharmacy said not to do that. Not sure why not.

Do you have any more ideas on the subject? I've been planning on storing the first bottle of Sovaldi I received, the one that got hot in shipping, and using it for the last four weeks of treatment when it's less important. But I wonder if storing it for two months in my hot apartment is going to be okay.

I hate the summer heat, it always worries me about meds. I've been taking supplements for six years and they have gotten ruined by the summer heat on numerous occasions.

Am I taking it too seriously, do you think? Or is there real cause for concern?

Mike

Happy to report I finished treatment on June 28th! Now the waiting begins!!

Mike, my medication was delivered and left on the front porch and sat in the direct sun. I called the specialty pharmacy and they told me the same thing about the heat tests. I stayed und while taking my overheated medication as well if that helps!

The parcel shipping business is competitive and they will do whatever it takes to make the customer,, ( the pharmacy shipping it, ) more than happy,, The cooler is really just the shipping Company over zealous service.  It comes with the competition.  So when you get drugs in a cooler and you think OMG I got to keep this cold... Keep in mind,,, this cooler is really  overkill on the shippers part.

FYI.. Employed at DHL   5 years.

Thanks, Rob. It helps to know other people's experiences, and that the meds do their work regardless of how they're shipped.

Cheers!

Mike

No Worries Mike,

Mine shipped the same way. I think they are probably fine although it's definitely frustrating. I just did my four week labs and the meds are definitely working. Good luck!

Hi, Isiscat.

Perhaps if you offered to pay yourself to upgrade the shipping method?  It would probably be worth it just for the peace of mind.  

It would be worth it, of course, for the peace of mind. But they don't do that. It's not part of their system.

Apparently Gilead did temperature tests with Sovaldi and published data saying that it can be stored at 120 F. for 45 days without losing significant potency. This opens the door to indifferent shipping methods.

Mike

Hi, Tig.

Thanks for the good words. You're probably right, but I'm a worrier.

Anyway, a very nice young lady named Christine just called me from Covance and told me that they have placed the second bottle in special heat-protected packaging and arranged for UPS to deliver it in the A.M., a big improvement.

As soon as I have a lab set up to do my CBCs and VLs, I think I will finally be able to start treatment. It will be a big relief just to get started.

Cheers.

Mike

I was supposed to take one in the morning and one at noon (maybe to evaluate different reactions) but soon decided to take both in the morning at breakfast time. Worked well for me.

Any thoughts on the best time to take Sovaldi/Olysio?  I am trying to decide whether morning or evening would be better.

I am just waiting for FedEx to deliver my meds.  Tick...tock...tick...tock...  I guess I am more anxious than I realized.

HepC has a way of demanding patience.  It seems that we are always waiting for something -- test results, better treatments, approvals, etc.  It seems like I should be used to it by now.

But the new hope of this treatment has brought a new sense of impatience with it.  Really, that is well worth it.  :) 

Hi Mike:

It should be okay, but geeze, what numbskulls!

Greater precautions are taken with a 30 dollar box of chocolates; one would think they could better protect an 80 thousand dollar bottle of meds.  Perhaps if you offered to pay yourself to upgrade the shipping method?  It would probably be worth it just for the peace of mind.  

Hi Mike,

While I'd be angry as well, I think you'll be okay. Gilead states Sovaldi can be stored at 86 degrees on a regular basis, which is fairly warm anyway. I believe  temporary exposure to even higher temps for that brief amount of time  shouldn't cause you game changing problems. Since you have notified your doctor and the drug manufacturers and they instruct you to continue, that's exactly what I would do. As you progress with treatment, you're going to have tests that will confirm the antiviral action of the drug is working. You'll be able to tell at that time if there has been any effect on the medication. Remember, if this is their standard shipping practice, a problem would have already presented itself. So I would try and put that out of your mind and concentrate on destroying the virus!! Good luck...

Tig

Hi, all.

I was approved for patient assistance for Sovaldi and Olysio and have received the first bottles of each.

However, Covance, Gilead's specialty pharmacy, sent the bottle of Sovaldi by two-day UPS, and it was delivered to my house on a very hot day (100 F. real-feel) by unrefrigerated truck at 7 P.M. When I opened the bubble pack, the bottle was so hot I dropped it out of my hand. It must have been sitting in the truck all day!

I told my MD what happened, and he said to wait until the second bottle to start treatment, leaving the over-heated first bottle for the last four weeks of treatment.

Well, I'm due for the second bottle now, and I talked to Covance and Gilead about the delivery problem, but I have gotten nowhere with them. They refuse to change the shipping method, and it's even hotter now than when they sent the first bottle.

I'm kinda freaked out. Can anyone here give me some advice about what to do?

Thanks.

Mike

Thanks also from me, Tig56.

Peter and Dee Dee, congratulations are in order for both of you! One more UND  VL at week 12 Dee Dee and you'll be awarded with your SVR and Peter since you were UND at week 8, it's probable that you're right behind her! Good luck to you both!

Peter, the reason so many states aren't covering the costs of these outrageously priced drugs is because their Medicare/Medicaid budgets were already determined before the FDA approval of Sovaldi and Olysio. There was no way those budgets could be rewritten during the same year. There is hope that the budgets will be expanded to include access to these drugs as well as the others currently in the pipeline. If they had unilaterally approved access to these protocols this year, it would have negatively impacted all the other government services. But you're right, it is all about the current price structure. Hopefully next year will prove to be a brighter day for all people needing access to these medications.

Tig

Hi All,

Just finished Sovaldi and Olysio treatment (12 weeks) yesterday. The treatment was basically a walk in the park. Virtually no side effects. I've had cirrhosis for about ten years (compensated) and so my health issues around that continued. After about week 7 I got some energy back and still have it. I was UND at week 8 blood test.  I tried to get my treatment extended for a month but my hepatologist, (Atif Zaman MD) from OHSU was not in the slightest bit willing to go for it. 

Now I'm hoping I stay undetected. To that end I am working with my naturopath to boost my immune system with IP6, medicinal mushrooms (Chaga, Reishi, and Turkey tail), and other herbs and supplements. Aside from the mushrooms and a few well researched (by me) herbs I basically stopped all my herbs and supps during the treatment.

I had my EOT blood work yesterday including a VL and will get the results back mid week.

It's been a great three months and I was very sorry to stop taking the Sovaldi and Olysio. If they weren't priced so high, my doc would have easily been able to be talked into extending the treatment for me. If I relapse I will have a hard time not blaming Gilead and Johnston and Johnston for pricing the drugs way too high.

Their pricing structure has resulted in thousands of people being unable to take these drugs. Oregon's Medicaid, for example, will not treat with Sovaldi at this point in time depriving people with few financial resources access to this life saving medication.

I'm staying positive, nevertheless, and am hoping I am cured.

Cheers!

Peter

Tom wrote:

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>>. I've seen too many packages left on I'm e wrong doorstep, and this stuff is more valuable by weightr than gold, so always have them hand it to you!

I thought maybe they could just leave it on the jewel-encrusted table, right next to the stack of gold bars. 

I totally agree with you -- I did ask them to send it signature required.  I live in a safe neighborhood, and I trust my neighbors, but there are just too many things that could go wrong. 

And as expensive as this stuff is, that is nothing compared to the cost of interrupting the treatment.  Not a chance I am willing to take.  I will just have to make sure I am home when it is delivered.

Thanks!

---

 Know what you mean Tom. I had the same fears, but Im retirrd so I could be home a few days in a row. Once you receive the first package, you'll get an idea of delivery times.

P.S. Ordered mine on Mondays and got it on Thursdays between 10 & 12.

TomF wrote:

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>>I've seen too many packages left on the wrong doorstep, and this stuff is more valuable by weight than gold, so always have them hand it to you!

I thought maybe they could just leave it on the jewel-encrusted table, right next to the stack of gold bars. 

I totally agree with you -- I did ask them to send it signature required.  I live in a safe neighborhood, and I trust my neighbors, but there are just too many things that could go wrong. 

And as expensive as this stuff is, that is nothing compared to the cost of interrupting the treatment.  Not a chance I am willing to take.  I will just have to make sure I am home when it is delivered.

Thanks!

---

Hi,, I have gotten all my meds by mail but have a older brother ,who is handicap, in a daybed right by the door and mailbox.  I didn t use any sig because I knew it was not necessary in my case.

I have been working for DHL Global Mail for five years and lost packages are almost 0%.  The Postal service does a good job and the fedx guys do a quick job. Ups is the best for this.  I think.

>>I've seen too many packages left on the wrong doorstep, and this stuff is more valuable by weight than gold, so always have them hand it to you!

I thought maybe they could just leave it on the jewel-encrusted table, right next to the stack of gold bars. 

I totally agree with you -- I did ask them to send it signature required.  I live in a safe neighborhood, and I trust my neighbors, but there are just too many things that could go wrong. 

And as expensive as this stuff is, that is nothing compared to the cost of interrupting the treatment.  Not a chance I am willing to take.  I will just have to make sure I am home when it is delivered.

Thanks!

No worries Jimbob. I have heard of S/O shipping both ways and I'm sure it's not good for them to be exposed to high temps for long periods of time. Just wanted to throw that out there just in case some are worried if their meds ship unrefridgerated.

Have a great 4th of July friend!

-Rob

None of my two meds are refrigerated and they both came from the manufactures pharmacy. Just fyi, I doubt that makes any difference.