Hep C Discussion Forum

Marypetrecz · Senior Member

RE: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?

TomF · Member

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. confuse

I'll keep you posted.

Thanks!

Mike716 · Member

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

Dzdayscomin · Senior Member

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 ? hmm

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 ??

TomF · Member

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.

Mike716 · Member

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

Mike716 · Member

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

Caryn · Senior Member

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!

Huey · Guru

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.

-- Edited by Huey on Tuesday 8th of July 2014 02:11:36 AM

Mike716 · Member

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

Fireman Rob · Senior Member

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!

Mike716 · Member

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

Mike716 · Member

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

pierre · Member

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.

TomF · Member

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

TomF · Member

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. :)

Isiscat2011 · Guru

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.

Tig · Admin

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

Mike716 · Member

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

Peter M · Veteran Member

Thanks also from me, Tig56.

Dee Dee · Senior Member

Thanks so much Tig56 wink

Tig · Admin

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

Dee Dee · Senior Member

Good luck Peter.. I finished on June 12th and my VL was taken on the 13th. It came back undetected and I want to do another one soon. Hopefully good news for us all

Peter M · Veteran Member

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

jimbob · Senior Member

Tom wrote:
>>. 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.

-- Edited by jimbob on Friday 4th of July 2014 02:51:16 AM

Huey · Guru

TomF wrote:
>>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.

TomF · Member

>>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. biggrin

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!

jimbob · Senior Member

You too Rob. Got firecrackers and everything.

Thanks again.

Fireman Rob · Senior Member

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

-- Edited by Fireman Rob on Thursday 3rd of July 2014 08:01:22 PM

jimbob · Senior Member

Rob, if that's the case then obviously it's not an issue. Of course, in my case the peg-inf had to be refrigerated, and the Sol/Rib were along with it. My mistake. I was thinking someone on here had mentioned their Sol shipment was refrigerated. My bad.

Thanks.

Fireman Rob · Senior Member

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

jimbob · Senior Member

Tom, something to think about tho, if you request signature and you're not home, it will set in the truck until driver's route ends,...could be 7 or 8 at nite. The stuff is refrigerated. The special pharm can give you and idea of when it ships and what day it will arrive. Fedx and UPS run the same routes daily, so it will come roughly around same time on delievery. I chose the 'no signature' . Just depends on your preference.

Good luck Tom.

-- Edited by jimbob on Thursday 3rd of July 2014 05:39:28 PM

Tig · Admin

Hi Tom,

That's the easiest approval I've seen yet! My medications were half the price and they refused to leave them without a signature and I recommend you do the same! 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!

You should do very well on this treatment and hope you will share your progress with us. I wish you the best of luck!

Tig

TomF · Member

After several phone calls and many questions, my insurance company has approved my prescriptions for Sovaldi and Olysio. I am getting the first 4-week supply via FedEx on Monday. smile

Of all the questions, the oddest question was: Should we send this No Signature Required? FedEx can just leave it on your front porch.

-- Edited by TomF on Thursday 3rd of July 2014 03:05:20 PM

Cinnamon Girl · Guru

TomF wrote:
Hello!
I am new to this message board. I hope to be starting Sovaldi/Olysio soon. I am waiting for the insurance to preapprove. (Fingers crossed...)
Tom

Hello Tom, welcome to the forum!

All the best of luck with getting approval from your insurance, it`s a great treatment combo. Fingers crossed for you too!

Cinnamon Girl · Guru

Audreyanna wrote:
No no no! I looked again and now it says Undetected!!! Don't know what happened but disregard all that. I'm thrilled!!! Omg I know what it said Before. Am I losing it or did they repost new results? I'm afraid to look again. Thanks everyone!!!

That`s amazing, Audrey, congrats!! biggrin Who knows what happened... it`s certainly excellent news!

TomF · Member

Hello!

I am new to this message board. I hope to be starting Sovaldi/Olysio soon. I am waiting for the insurance to preapprove. (Fingers crossed...)

Tom

Gator Man · Senior Member

Greg,

I just saw your news. I truly believe that you and everyone else with Hep C will have successful txt outcomes in the near future. Gone are the days of only interferon/ribavirin tx, with no alternatives on the horizon. Hang in there! You need to show me where the fish are biting when I get back to Gator country!

Fireman Rob · Senior Member

That's more than great news Audrey! Pheww, after the last couple of days and watching some bad news roll in, I was really starting to question the success of this tx. We win some and lose some but this is definitely a huge win! I know everyone here has a great shot at SVR within a years time, relapse or otherwise.

Thanks everyone for sharing their lab results.

Tig · Admin

That's wonderful Audrey!!! I was just going to ask if you may have read the previous test result by mistake? That happens so often when you get them all together like that. Whatever happened, it isn't important now, UNDETECTABLE!!!! WOO HOO!!!! Congratulations, this is great news. I bet you're having trouble keeping your feet on the ground after realizing this great news! I'm so happy for you! Continued good luck....

Tig

Isiscat2011 · Guru

Yes, yes, yes! biggrin Excellent news! Next stop SVR.

Audreyanna · Veteran Member

No no no! I looked again and now it says Undetected!!! Don't know what happened but disregard all that. I'm thrilled!!! Omg I know what it said Before. Am I losing it or did they repost new results? I'm afraid to look again. Thanks everyone!!!

Audreyanna · Veteran Member

I was thinking that when I got my last pills and they said I have another month. I called Univ. Of Miami but the nurse wasn't listening to my question and simply replied, "yes, it's a 12 week treatment." Guess I'll have to save that question for the dr. I'm game if they are and my insurance is.

I'm just afraid the virus has become immune or something, to be exactly the same Viral load. But it hasn't gone up so that's strange too. Maybe they did post the last tests in error on the web page, if that's possible. I don't know but it's so upsetting like how can this happen with the odds they claim?! Thats what happens in small studies when the drug companies run it.

Tig · Admin

Hi Anna,

I would suggest you ask your doctor if there is the possibility of extending your treatment out to 24 weeks? With your cirrhosis and previous treatment history, I would think that should be an easy decision to support. How are you on that idea?

Tig

Audreyanna · Veteran Member

I'll try calling tomorrow but they're so busy they will probably not get back to me until Monday, well, maybe Thursday if I call first thing tomorrow. The nurses know very little it seems. I'll call. All that I can do now.

Audrey

Isiscat2011 · Guru

It could be a mistake. Is there anyway to find out before next Tuesday? That is a whole week away.

Audreyanna · Veteran Member

Thanks Isiscat. I've been doing everything right as far as I know. Been under a lot of stress as I had to make my only child move out and I'm lonely and worried about him. But the hope this treatment gave me I thought kind of kept me from stressing as much as I would have. Who knows? I wonder about trial results too. I think they can be scewed. Just unreal how the first 4 weeks it killed one and a half million and the next it couldn't handle 15. Almost thought they messed up and sent the old ones since they're identical. Wouldn't that be a nice surprise?

Anyway, thanks for the support and kind words. Glad you were online as I needed someone.

Isiscat2011 · Guru

I know Audrey. It is painful to watch and even more painful to experience. I do know that some docs are not even testing till week 12; perhaps it takes that long for some people to mop up the final few devils that remain.

I think there is still reason to hope that this tx will be the one to work for you. Maybe they will need to extend it a bit. You are so darn close. I know it isn't much consolation at the moment but the S/L combo is right around the corner. Seems like that combo could finish the job without even breaking a sweat if this doesn't work. You are so close, Audrey. Hang in there dear one.

Audreyanna · Veteran Member

I see him Tuesday. How can this be? So tired of the treatment roller coaster!

Isiscat2011 · Guru

Hi Audrey:

What does your doc say about this? I've not heard of this happening but hopefully others have and there was still a positive outcome.

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