Author Topic: Gilead Calling to check on me? (Read 29415 times)

Else · « **on:** February 10, 2016, 10:24:15 am »

So on Monday a rep from Gilead called me to see how I was doing post-treatment.

She also asked if I could give her the lot # of the medication I'd received. I'd kept the first bottle I'd received so was able to give her the number. For that sort of follow-up, I commend them. But has anyone had that sort of phone call? Yes it did spook me a bit.

First month post tx I felt okay. Second month, not so much. 3 weeks or so 'til my 12 wk post EOT labs. This third month is getting rough. If this is my body healing, it has a hell of a way of showing it. $:-\$

gnatcatcher · « **Reply #1 on:** February 10, 2016, 10:55:55 am »

Verrrry interesting. Gilead has never called me, even though I used their copay coupon deal. Else, sorry things keep getting rougher for you. The longer I go post-tx, the more aches and pains I experience, although still not as bad as pre-tx. Was Harvoni masking our decrepitude or causing the release of feel-good chemicals that have now gone back into hibernation? Darned if I know.

It is spooky that they wanted the lot #. You'd think that something that expensive would have a consistent manufacturing process.

slats1056 · « **Reply #2 on:** February 10, 2016, 12:31:03 pm »

Else, Hate it that it's getting rougher on You. No phone calls here! Things seem to be getting better little by little with Me. No Migraines which is a relief of epic proportion. Neck and back seem to have eased up to mild annoyance. Still have foot and knuckle pains. Knock on wood , the lower G.I. issues seem to have abated to minimal with liberal application of Kefir and Yogurt to increase pro-biotics in the gut. I still think that the problem were probably there Pre-Tx. , but the Virus and immune system working on it over shadowed the problems we are now experiencing.
I'm sitting at about 18 weeks post Tx. right now. I hope You start leveling out and getting better soon. Go slap an Idiot and get in a good jog!!!LOL.

IT'S FUNNY THAT WHEN I AM LOUD, PEOPLE TELL ME TO BE QUIET! BUT WHEN I AM QUIET PEOPLE ASK WHAT IS WRONG WITH ME!

gnatcatcher · « **Reply #3 on:** February 10, 2016, 01:34:59 pm »

Tommy, glad your vexations have been subsiding.

Maybe Gilead is calling only a random sample and asks for lot # to be sure that has a random distribution as well.

beto · « **Reply #4 on:** February 10, 2016, 02:08:09 pm »

They know who we are. I have been asked for the lot number when I called them. I had my questions and then they started asking me. They did call my doctor to check up on me to see if I had been in to discuss the things I had brought up to them. I was merely inquiring about certain side effects.

My lot numbers on 2 of the bottles were similar numbering. However, one of the bottles had a strange number that had no similarities to the others. The Gilead gal had not heard a number sequence like that one and said "huh'.

Of course I started freaking out thinking that mine got switched out in the mail with a fake one...haha. It always had occurred to me that mail theft was a possibility since they willy-nilly just put 28 k of meds in the mail. This seems so stupid to me. It would be better if they just had secure location to pick them up.

Else · « **Reply #5 on:** February 10, 2016, 02:33:59 pm »

Quote from: gnatcatcher on February 10, 2016, 01:34:59 pm

Tommy, glad your vexations have been subsiding.

Maybe Gilead is calling only a random sample and asks for lot # to be sure that has a random distribution as well.

I'm glad your issues seem to be resolving, Tommy. I like your all-caps quote.

Ain't it the truth. Don't be complacent but don't be pushy. Do be proactive but do be patient when the ball gets dropped - over and over and over. $:-\$ Damn, almost 20 years of "get treated!!!!" then "what's your hurry?"

I have great respect for sound science but I'm starting to understand why people go the 'alternative medicine' route.

Gnatty, I used the co-pay coupon as well. I wish I'd had bottles #2 and #3. I have no idea if those lot numbers would be the same. So a little better checking on my part. The phone call on a Saturday

not Monday. It came from Newport News, Virginia. A little googling came up with this - https://clinicaltrials.gov/ct2/show/NCT02258581

The above link is to a Hep B trial. I've never been involved in a medication trial. But maybe it's just a third-party follow-up organization?

I think it would have garnered a big 'whatever' is I wasn't feeling so bad. I did not expect this downturn. And here's what really scares me and it's not the return of HCV. It's having to re-enter the Health Care Industry processing plant.

Just saw your post, Beto. That eases my mind that tracking lot #'s is not uncommon.

gnatcatcher · « **Reply #6 on:** February 10, 2016, 02:39:08 pm »

Quote from: Else on February 10, 2016, 02:33:59 pm

. . . the Health Care Industry processing plant. . . .

very well put (unfortunately)

beto · « **Reply #7 on:** February 10, 2016, 03:27:30 pm »

Else

I just had a worrisome setback at EOT16. That relapse fear hit me too. For some of us, the healing part could take awhile with ups and downs. Funny I remember reading posts like a year ago form folks that had been through treatment and very many reported that while healing they had good and bad days (or weeks).

I think some of our issues are delayed or masked when with the virus. I think our bodies or more overwhelmed than we think. I believe that even those that never had a symptom from HCV were sicker than they felt.

There was a study of men before and after retirement that was meant to follow them for years. The study was aborted due to the sudden onset of issues after retirement. idea being that they put the health problems on hold so to speak. Kinda like when we suddenly have vacation time and we get sick or depressed. They say migraine sufferers often get them on the weekends. I think some of us may have a list of maladies that have wanted to heal for some time and after the disease is gone they have their chance.

For me I think there is a lot of emotional stuff that i could not face head on before and now it is coming to the forefront. I will say my brain might be getting better. My skin color is still good. My fingernail are losing the slightly yellow cast...my eyes are clear.

The relapse anxiety pretty much sucks, but it is understandable that it crops up. You are OK...you are still good Else.

Else · « **Reply #8 on:** February 10, 2016, 04:57:26 pm »

Thanks for the insight, Beto. This last year has been a fiasco. It's taken a toll on my psyche, no doubt. And that certainly doesn't make me a rare orchid in the HCV community.

lporterrn · « **Reply #9 on:** February 10, 2016, 05:57:43 pm »

Else - was this a random call or had you called to tell them and they were following up? I do know they are legally obligated to report any adverse events they hear about, but was wondering how they knew in the first place.

Else · « **Reply #10 on:** February 10, 2016, 07:32:12 pm »

The only time I've contacted Gilead was regarding their Support Path in late March of last year. Six weeks before my initial consultation with my hepatologist. And I did use their co-pay coupon. I called Support Path again after the July 1st changes to see if I could be "grandfathered in". No such luck.

But, no, I had not called them regarding adverse events so it wasn't a follow-up call in that regard. I guess that makes it random?

The only other thing that occurred to me was that my hepatologist closed her practice (moved to another facility) at the end of the year. On Jan 27th, someone from the liver center called to find out which physician or NP I would like to be reassigned to. I asked that my final labs be done at my GP's office and that I would be looking for a new liver specialist, if needed. There didn't seem to be a problem. But maybe Gilead called them for a follow-up and was told I was no longer a patient of record so they called me?

Lynn K · « **Reply #11 on:** February 10, 2016, 08:07:51 pm »

I haven't had a phone call like that as of yet.

I have a bottle I saved but I cleaned off the adhesive which I see now also removed the lot number.

Our local ABC affiliate TV news is doing a piece about how hard it is for us to get meds from our insurance companies.

http://komonews.com/news/local/scientists-discover-miracle-cure-for-fatal-disease-but-not-everyone-has-access

Else · « **Reply #12 on:** February 10, 2016, 08:55:21 pm »

Yes!!!

Wonderful that "independent third-party review" is getting press. And that the insurance commissioner is tell people too!

I wish a large poster with that info was up in every specialist's waiting room in the country. Thank you, Affordable Care Act!!!

hope2bcured · « **Reply #13 on:** February 10, 2016, 10:28:42 pm »

Quote from: Else on February 10, 2016, 10:24:15 am

So on Monday a rep from Gilead called me to see how I was doing post-treatment.
She also asked if I could give her the lot # of the medication I'd received. I'd kept the first bottle I'd received so was able to give her the number. For that sort of follow-up, I commend them. But has anyone had that sort of phone call? Yes it did spook me a bit.

First month post tx I felt okay. Second month, not so much. 3 weeks or so 'til my 12 wk post EOT labs. This third month is getting rough. If this is my body healing, it has a hell of a way of showing it. $:-\$

Yikes, that does sound creepy, i would freak if they called me. I started Harvoni in Jun finished in Sept had some cardiac and very high blood pressure issues during tx. I am also tx naive when I stopped I had awful joint pain, then this overwhelming fatigue began, am still having it am SVR 12 Fibrosis 1-2 had Fibroscan about a month ago. My latest issues are a creepy discoloration on one of my breasts that developed about 2 weeks ago, had Mammogram, I had a little scare w/Inflammatory breast cancer a few years ago, so they ordered some old films to compare, now I am getting bizarre rashes all over my body, they start out red and burn and then itch horribly, and also some itchy welts that I have had in the past (i thought were due to hcv). I dont get this, I am supposedly cured of HCV but, I feel so yucky, so fatigued, had 3 infections since Christmas, ended up w/yeast infection and ear problems, since stopping Harvoni its been one thing after another. In one sense I want to research to know whats going on, in another I am afraid to know. I wonder if we have the same lot number lol If you want to send me yours privately that would be fine with me, I saved my bottles, I dont know why but I did. I hope you feel better soon!!!

Else · « **Reply #14 on:** February 11, 2016, 11:04:22 am »

215 views of this thread and no one has had Gilead call them? What the hell. Nothing confidential about the lot # of my first bottle - Lot: 004703 Exp: 03 2017

My 12wk labs were "undetected", with a CBC, BMP, and HFP all normal.

I just wish I had saved the last two bottles. Then again, I can't untake them.

Hope, I'm sorry you're having problems. I'm definitely of the "want to know what's going on" camp.

I've called the gal back twice and left messages. Odd that she'd called me on a Saturday. Odd that her voicemail is just her name and "leave a message" - it does not sound like a business line.

lporterrn · « **Reply #15 on:** February 11, 2016, 04:06:38 pm »

Else, I am one of the most laid back people in the world, and not easily perturbed, but this is creeping me out. A couple of thoughts. 1) Ask her to connect the dots. What triggered the event for follow-up? 2) If you don't get a satisfactory answer, and you are wiling, I'd like to let some advocates know. I will not do this without your express permission.

gnatcatcher · « **Reply #16 on:** February 11, 2016, 04:39:35 pm »

Else, I have 3 empty bottles. The lot numbers are all different and in ascending order according to fill date. I dealt with CVS Caremark Specialty Pharmacy; perhaps CVS stored the lot numbers in my database entry, in which case Gilead could get them from CVS? In September I did get a phone call from a third party surveying how well CVS Caremark had served me.

FutureThinker · « **Reply #17 on:** February 11, 2016, 04:54:06 pm »

I'm with Lucinda -- let's try to get to the bottom of this. And, if I EVER get my hands on a bottle of Harvoni, I'll be sure to keep them! FT

Else · « **Reply #18 on:** February 11, 2016, 05:55:12 pm »

Lucinda - the woman who called me was Ann Marie Baker, location on smartphone showing Newport News, VA. Doesn't look like she intends to return my calls from yesterday and today or I'd LOVE to ask her to connect the dots. By all means, let whoever you'd like know with my full consent.

Gnatty - just got off the phone with Walgreens Specialty Pharmacy. They don't store lot#s. They're very familiar with Harvoni prescriptions and when I explained the call I'd gotten and my concern she said it was weird and she'd be concerned too. And to call my doctor.

And I did. My GP. Am going in to get my "12wkpostEOT" labs today. They should have already had the lab orders from the liver center. Requested 2 weeks and 1 day ago. Nope. Goddamn that place. It just doesn't stop. And my GP's office doesn't lose stuff. It was just never sent.

So post-tx labs will be done 2 weeks and 2 days early. I DON'T CARE.

Else · « **Reply #19 on:** February 11, 2016, 06:11:55 pm »

Btw - would be going in there, labs or no labs. I still have my late friend's Omron blood pressure monitor. So what the hell, right. I feel awful. BP 132/102 with a resting pulse rate of 128, with the little heart icon showing irregular heartbeats detected. I don't have issues with blood pressure. I'm a 120/80 gal and have been forever.

So off I go. Glad I know the labs I need. And again, thanks for NOTHING liver center. They're word means nothing. Consistent incompetency since May 11th, 2015.

beto · « **Reply #20 on:** February 11, 2016, 07:56:11 pm »

Wow Else,

You need all the support you can get right now. All of this will make sense in the end. You will clear the virus. Sounds like you are having A BIT OF A Panic attack. Every one of us are here. Peace...

gnatcatcher · « **Reply #21 on:** February 11, 2016, 08:01:09 pm »

Else, there is an Ann Marie Baker, MD with her office in Mechanicsville, VA, which is not that far from Newport News. I'm NOT saying that's who called you, but FYI here's the link to her Virginia Board of Medicine page: http://www.vahealthprovider.com/results_generalinfo.asp?license_no=0101245196
If someone has "borrowed" her name, she might want to know.

Don't worry about that BP reading -- I get far worse white-coat hypertension whenever I'm in a doctor's office, and also when a burglar was casing our house with me inside.

lporterrn · « **Reply #22 on:** February 11, 2016, 09:18:33 pm »

Else - I removed the phone # from your post - I feel protective of everyone here on the Forum, but by extension, it seems prudent to leave phone #'s and email addresses off of our public forums.

As for that BP, not alarming - take it easy, breathe, drink lots of water, and take it again in the morning.

slats1056 · « **Reply #23 on:** February 11, 2016, 10:58:15 pm »

Else, Take a chill pill and relax, take a long walk and get some fresh air and stretch Your legs a bit. Step back from things for a moment and breathe. My blood pressure shot up after Xmas. Normal was 135-140 over 75-80. Then it went up and stayed at 185-195 over 90-95 for a while ! Internist couldn't explain it. Nor could My G.I.! They put Me on a low dose (5mg) of Amlodipine. After 2-3 weeks it started dropping. Now it's 120-130 over 70-80 and dropping! Sounds like a lot of it is after treatment Sx. , stress , and anxiety brought on by all the B.S. that You are experiencing. Get with Your GP to be on the safe side and try to relax. Maybe a massage or a sauna. How about a You day at a spa? All about You getting away and pushing all the drama aside for a day! I really hope You get to feeling better!

WHEN I FEEL DOWN AND SOMEONE TELLS ME TO "SUCK IT UP", I GET THE URGE TO BREAK THEIR LEGS WITH A BASEBALL BAT AND SAY "WALK IT OFF"

slats1056 · « **Reply #24 on:** February 11, 2016, 10:59:22 pm »

I SEE YOU

Else · « **Reply #25 on:** February 11, 2016, 11:19:10 pm »

Yeah, that was stupid of me to put the phone #. Sorry Lucinda. I did go see my GP and glad that I did. I don't race into the doctor's office at the drop of a hat and she knows that. That's what's cool about a 13 year long family doctor relationship.

Murphy's Law - that Newport News tele # called back while I was in the doc's office. No message. And it would have been almost 8:00 pm their time.

Still weird. Left no msg so I guess we'll just see.

Thanks for checking that out Gnatty. I think that MD is a podiatrist but maybe she's moonlighting? Or a common name. Back to I guess we'll just see. Wow, burglar creeping around outside with you there? Ack. I'm glad I had my heelers back on the farm. A bit like living with a Special Forces Team... with tails.

Beto - thanks for the kind words. No, not a panic attack. Those are immobilizing. But a bit of an anxiety meltdown for sure. Thank you for wishing me peace.

I see you too, Tommy.

Omg, ahahahaa!!! Your Tommyisms need to go in a book. I really didn't think I'd be laughing tonight.

Thanks for sharing your literal ups and downs. Glad I went in and so was my doc. Some tests I didn't expect but funny how that doesn't unhinge me if I'm just treated like a human being. Yeah, the stress has been cumulative. For better, for worse, I just want to be done with downtown.

Ya'll rock, btw. I am very grateful.

slats1056 · « **Reply #26 on:** February 11, 2016, 11:29:38 pm »

Like I always say, Laughter is the best medicine when taken in copious amount! AND it don't cost a dime. Maybe at someone elses' expense but what the hell. Somebody has to pay! Right!

I DIDN'T FART! MY ASS LIKES YOU SO MUCH IT BLEW YOU A KISS!

Else · « **Reply #27 on:** February 11, 2016, 11:44:02 pm »

Now that's a Valentine's Day card right there.

Lynn K · « **Reply #28 on:** February 12, 2016, 12:34:15 am »

Hii Else

Have you tried a reverse look up on the phone number is it associated with a business?

Yes agree weird

Else · « **Reply #29 on:** February 12, 2016, 12:44:02 am »

Good idea. I just tried a few sites. The best I got was "private line" or "possible owner of phone unavailable". Doesn't sound like a business line.

Lynn K · « **Reply #30 on:** February 12, 2016, 01:42:27 am »

hummm the mystery deepens

gnatcatcher · « **Reply #31 on:** February 12, 2016, 06:36:41 am »

Lynn, reverse lookups aren't what they used to be 10-15 years ago. Now it's like looking for a needle in a haystack. Plus, there's no guarantee the caller wasn't spoofing the phone number. That's what I meant by "borrowed."

Else, the VA Med. Bd. entry listed her practice areas as "internal medicine" and "hospitalist," but in this era of gynecologists doing laser hair removal, I suppose she could do other things too. Good luck actually getting to talk to your mystery caller.

HealthGal3 · « **Reply #32 on:** February 12, 2016, 09:14:02 am »

Else

Just read your prior posts. Scary! I have 3 more days to go on Harvoni and have been feeling pretty good...more normal. I know there are others with your same issues end of or post treatment. I have kept all bottles of the medicine which were filled through a specialty pharmacy. Never had high blood pressure, but during treatment, my pressure dropped lower than normal. I think that happens with our bodies when based upon our existing medical issues.

I'll let you know if I hear from Gilead. You have to remember that any medication or treatment for illnesses doesn't come without risk. We don't know the long term effects from this drug. However, what was the alternative? I was going downhill from the disease. I'm not sure how much longer I could have held out.

I'm going to continue drinking lots of fluid to flush out the drug and started back on my regime of vitamins and exercise. When my body says rest, I rest. Yeah, there are joint issues, but anything pre existing, will flare up at times.

Keep us up to date and feel better!

HealthGal

Else · « **Reply #33 on:** February 12, 2016, 11:45:31 am »

Hi HealthGal,

I hope I didn't come across like I regret fighting for and taking the Harvoni. Not at all! And absolutely, if you take a new medication you assume a risk of unknown future problems. I accepted that risk willingly and have zero regrets.

Also, there are other health problems that can come up unrelated to HepC or its treatment. I just need to figure out what's going on so I know what I'm dealing with and am not just in a holding pattern.

FutureThinker · « **Reply #34 on:** February 12, 2016, 12:02:38 pm »

Else, I am very unhappy to see having to go thru all this nonsense....... this too will pass. Without reading thru this whole thread, would a call to Gilead help clear this up? This is quite a mystery!! Hope you are having a better day today -- FT

HealthGal3 · « **Reply #35 on:** February 12, 2016, 12:22:29 pm »

Else

I know you didn't come across that way. There are many of us who have similar issues with or without the effects from the medicine. It may just take you longer to rid your body of any toxins. So, drink, drink, drink water!

My med lots were all different. I'll see how I do post treatment.

Just be patient with your body. Let it readjust to life without the virus, and you'll be fine. We're all rooting for you.

Keep us posted. ✌

HealthGal

BillT · « **Reply #36 on:** February 12, 2016, 04:04:37 pm »

Hi Else,Wherever you got your meds from should have a history of the meds and all the lot numbers in case of a recall if I'm not mistaken.Call them and ask.

BillT · « **Reply #37 on:** February 12, 2016, 04:15:43 pm »

Else,I just checked the FDA website and there are no recalls or safety alerts on Harvoni.Just thought I would pass it on.

Else · « **Reply #38 on:** February 12, 2016, 05:24:40 pm »

Thanks for the support! And Bill, that was really good of you to check the FDA website. That's comforting. I did call Walgreens and they did not have access to lot #'s. At least not the person I spoke to, but they have been nothing but extremely competent and above and beyond helpful, so I hesitate to doubt them.

Gnatty - I saw the "internist" and hospitalist" but somewhere in there was 'board certified podiatry' as well. Got a chuckle at your reference to a laser wielding gynecologist. heh. Interesting visual.

I have heard of specialists branching out into other lucrative areas. For example a podiatrist doing liposuction. Oy.

Well, Mystery Lady called me back once so no reason to think she won't call me back again. I left another msg and this time have nothing that would prevent me from taking a call.

My GP's office called me this morning with results from labs, EKG and chest x-ray. They weren't done just because of BP and heart rate. When I said "I feel awful" I uncharacteristically omitted the laundry list of symptoms here on the board. But I didn't omit anything to my GP, hence the tests. All is normal.

Probably a bit of a wait for the (2 wks too soon) viral load, but that's fine. I'm still relieved it's in the works.

lporterrn · « **Reply #39 on:** February 12, 2016, 06:15:28 pm »

Else, no worries about the phone # - it was only up a minute. Anyway, have a wonderful weekend - eventually this will be resolved.

KimInTheForest · « **Reply #40 on:** February 12, 2016, 07:26:30 pm »

Quote from: Else on February 12, 2016, 05:24:40 pm

My GP's office called me this morning with results from labs, EKG and chest x-ray. They weren't done just because of BP and heart rate. When I said "I feel awful" I uncharacteristically omitted the laundry list of symptoms here on the board. But I didn't omit anything to my GP, hence the tests. All is normal.

Glad to hear this good news from your recent lab tests, Else. I too was not expecting a downturn in my health post-tx. It was depressing, annoying, and at times alarming since it went on for weeks and even months. But all I can say is: it will pass. Hang in there, and keep the faith. Your body is recovering from many things right now.

And yes, that phone call is weird and spooky. Have been following this thread. I think I would call Gilead directly - see if they know what it is about. What if some 3rd party is calling Harvoni patients claiming to be Gilead and trying to collect data from you for their own purposes? Gilead would want to know about that.

Stay strong,
kim

Else · « **Reply #41 on:** February 12, 2016, 08:46:48 pm »

Thanks Kim! Your words are comforting. It's almost like you were a writer or something.

And I will be calling Gilead directly either way. But I'd like to give this gal a chance to call back again to hear what she has to say. If she hasn't called by Monday, I'll call Gilead.

And thank you too, Lucinda. I plan on enjoying my wknd. Watching my teenager do yardwork. There's such a small window in life for that.

BillT · « **Reply #42 on:** February 13, 2016, 09:49:05 am »

Morning Else,
All of my stocks are in pharmaceutical companies so I'm really good with FDA and clinical trial searches.

FutureThinker · « **Reply #43 on:** February 13, 2016, 11:07:38 am »

My denial was overturned by the state IMR!!!!!!!!!!!!!! I tried to post on this topic yesterday, but I guess since I was crying I did something wrong and it didn't go thru. So looks like I AM going to get my hands on a bottle of Harvoni (actually 3) in the next 10 days, per my doctor's office. Else, your advice of "appeal, appeal and appeal" is absolutely correct..... we should not have to go thru this to get treated for a documented medical condition that could kill us. I burst into tears/sobs when I hung up the phone last night with the news from my ins. co., followed by a HUGE happy dance!

I so appreciate all the kind/inspiring/encouraging words I've received on this forum. Now let's hope I can be one of the successes we keep reading about here! We're finally going to find out. Future's looking good for a change! All have a super weekend and Valentine's Day, FT

beto · « **Reply #44 on:** February 13, 2016, 11:57:00 am »

Thrilled for you FT...welcome to the Harvonian Guild. Now the fun begins!!!!

Else · « **Reply #45 on:** February 13, 2016, 12:02:41 pm »

Wooo-hoooo! And happy Valentine's Day to you!

FT, I am only forwarding on info that I received right here on this forum. Appeal, appeal, appeal!

Most critically, take it to the level of an "Independent Review Organization" or an "Independent Medical Review" - I've seen it phrased both ways. But this means your case is being reviewed by a doctor NOT on your insurance companies payroll.

And don't be fooled by misleading wording from your insurance. For example, on my second appeal an "External Review Specialist" signed off on another denial. It would have been easy to assume that I'd had my independent review. Not so! A more accurate title for this doctor would have been "An Internal/external reviewer".

But to be fair, my insurance's appeals department was very communicative on the phone, giving me the contact info of an IRO and the timeline I would have to adhere to in requesting a review.

It is SO easy to think it is pointless after so many denials. An unbelievably kind forum member shared with me her entire IRO submission (sensibly redacted for her privacy). It gave me hope. It gave me literally a physical template to work with. And IT WORKED!!!

FutureThinker · « **Reply #46 on:** February 13, 2016, 12:20:32 pm »

Yes, the IMR has been a life-saver, literally!!! I think I'm going to start another topic under "Considering treatment" to encourage more to go to their state ins. board, if they have to. Actually, it was the easiest part in this whole mess. FT

lporterrn · « **Reply #47 on:** February 13, 2016, 02:59:07 pm »

Fabulous news FT!!!!!!!!!!!

FutureThinker · « **Reply #48 on:** February 13, 2016, 04:17:33 pm »

Thanks, Lucinda, it has been a LONG time coming!! Happy Valentine's Day, FT

Else · « **Reply #49 on:** February 15, 2016, 03:13:56 pm »

Update: still no return call from Mystery Lady. And Gilead's closed for the holiday weekend. I used a tele # based in San Mateo, CA and from the voice recordings it sounds like the correct one to call. So I'll try again tomorrow. Not losing sleep over it but would just like an explanation.

HealthGal3 · « **Reply #50 on:** February 15, 2016, 03:41:19 pm »

Quote from: Else on February 15, 2016, 03:13:56 pm

Update: still no return call from Mystery Lady. And Gilead's closed for the holiday weekend. I used a tele # based in San Mateo, CA and from the voice recordings it sounds like the correct one to call. So I'll try again tomorrow. Not losing sleep over it but would just like an explanation.

Else

Maybe this was a random call from Gilead or perhaps it might have been from the pharmacy. Did you check your caller ID and Google the number? That might help.

HealthGal

Else · « **Reply #51 on:** February 15, 2016, 04:02:02 pm »

Hi Health Gal,
I have the gal's full name and tele#. It's not a business line that I can tell. It definitely was not my specialty pharmacy (Walgreens). I'm going with random call from Gilead, but that's why I started this thread. I didn't think I'd be the only one who got a follow-up call.

Maybe they have people working from home doing random follow-up calls? I'll likely have more luck tomorrow.

HealthGal3 · « **Reply #52 on:** February 15, 2016, 04:07:01 pm »

Quote from: Else on February 15, 2016, 04:02:02 pm

Hi Health Gal,
I have the gal's full name and tele#. It's not a business line that I can tell. It definitely was not my specialty pharmacy (Walgreens). I'm going with random call from Gilead, but that's why I started this thread. I didn't think I'd be the only one who got a follow-up call.

Maybe they have people working from home doing random follow-up calls? I'll likely have more luck tomorrow.

Else

Google her name and/or phone number and see what comes up.

HG

Else · « **Reply #53 on:** February 15, 2016, 05:16:11 pm »

Thanks HG. I've ready tried reverse look-up sites.

I googled name and #. It's a landline. That's all I got. But the gal's voice msg does not sound like a business. "This is so and so, please leave your name and #... etc."

Following through on this on President's Day isn't going work. Tomorrow is fine.

HazelAustralia · « **Reply #54 on:** February 15, 2016, 05:51:16 pm »

Maybe an investigation into your first gastroenterologist? I got a call from AbbVie the other day, saying 'you started in Decemeber??' and then asking me to read the leaflet about overdose. I was at work so I couldn't speak for long.

Else · « **Reply #55 on:** February 15, 2016, 06:15:10 pm »

Thank you so much, Hazel! Very reassuring that someone else somewhere has been contacted directly from a pharmaceutical company.

As far as contacting the liver center from whence my Harvoni prescription originated? It's been 8 months of no information or misinformation. They are consistent, I'll give 'em that. But it's no place I'd ever call again.

HazelAustralia · « **Reply #56 on:** February 15, 2016, 10:49:02 pm »

Sorry Else, I wasn't clear - maybe the people who rang you are doing an investigation into your first liver centre doctor - the one who disappeared - for whatever reason - and the call to you was part of that investigation. Just a thought.

Else · « **Reply #57 on:** February 16, 2016, 12:02:22 am »

No, it wouldn't be that. She has a stellar reputation - she just moved to a different facility. And the liver center? Who knows. I'm thinking I'll find out tomorrow.

HazelAustralia · « **Reply #58 on:** February 16, 2016, 12:41:55 am »

Sorry Else, I wasn't clear - maybe the people who rang you are doing an investigation into your first liver centre doctor - the one who disappeared - for whatever reason - and the call to you was part of that investigation. Just a thought.

HazelAustralia · « **Reply #59 on:** February 16, 2016, 12:43:06 am »

posted twice- don't know how. good luck tomorrow, h.

Else · « **Reply #60 on:** February 17, 2016, 06:49:17 pm »

Called Gilead yesterday morning. The same # I used for co-pay coupon. And the only number I ever used. Nice gal took my name (yes, I'm in their data bank), info on the mystery caller including her name and tele#. She said she would give it to her manager and they would get back to me.

So far, no call back. I guess I'm back to 'well, I can't untake them if there's a problem so whatever.'

Ledoc01 · « **Reply #61 on:** February 19, 2016, 01:03:31 am »

1st off..congratulations.

Next: I'm glad you called them and, I hope they follow up sooner rather than later.
Something just doesn't smell right to me and it feels creepy somehow. I mean seriously... I can go right now and pull up invoices for computer systems/parts that I purchased 5+ years ago and get the serial numbers of the items I bought. I therefore find it very difficult to beleive that they don't know exactly where each and every one of those $30k bottles of pills went. To claim otherwise is absurd.

Keep us posted

HazelAustralia · « **Reply #62 on:** February 19, 2016, 02:39:30 am »

I'll be interested to hear too,

H.

Else · « **Reply #63 on:** February 19, 2016, 11:58:43 am »

Yes, it is creepy. And wtf with Gilead not calling me back at least. It's a legitimate enough concern. All my meds came tight and right from Walgreen's. No problem according to them. If the caller was up to no good, why use an identifiable telephone number that goes to a voice msg with a full name? Wouldn't a criminal block their caller ID? And a landline on a Saturday from Newport News, VA? Who uses a landline anymore anyway? Ack. A lot of question marks.

BillT · « **Reply #64 on:** February 19, 2016, 04:41:53 pm »

Hi Else,
I would call Gilead back and talk to them again.This time get the name of the person you talk to,and also ask their managers name.Better yet ask to speak directly to their manager.See what happens.

FutureThinker · « **Reply #65 on:** February 19, 2016, 05:03:22 pm »

I'm with BillT -- need to get to the bottom of this. Good luck, FT

Else · « **Reply #66 on:** February 19, 2016, 06:06:57 pm »

A bit of progress. I called "patient assistance/co-pay" number again.

A couple of things: the above number is not Gilead. They are a third-party servicing organization. Also, Ann Marie Baker IS with Gilead in their client services/product safety department. So that's good. Sort of.

I now have a Gilead 1-800 # to call directly but after 20 minutes on hold, and assuming they're on the east coast from Ms. Baker's tele #, I hung up and will call again on Monday.

FutureThinker · « **Reply #67 on:** February 19, 2016, 07:09:08 pm »

Well, at least this is sounding a bit more legit -- keep us posted! FT

BillT · « **Reply #68 on:** February 20, 2016, 10:36:55 am »

I wouldn't worry about it Else.Since she's with them it was a legit call.The only information she asked for was a lot number so it wasn't fishing,and if there had been a problem they would have definitely called you back by now(lawsuits and such).I would just let it go and bury it myself.

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