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Author Topic: Is anything safe anymore?  (Read 3332 times)

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Offline Queen Tokelove

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Is anything safe anymore?
« on: July 30, 2007, 02:00:19 PM »
I really hate that I just lost my entire post and have to start over again. I made some pretty good points in the last one. I was reading my email and saw an article about Advandia again. How they are still trying to get it taken off the shelf or given a black box for the side effects, the most fatal being congestive heart failure and heart attacks. Being in a haze, I got to wondering some things....Like why would the FDA approve something like this? But who knows how the government thinks? Then I got to thinking about my own doctor, why did he prescribe it to me? If I can get information about it on the net then I am sure he been knew about it, prolly at some medical conference. I stopped taking it immediately. At my next appointment, I told him why. He had no problem with my decision and started me on Actos. In same article, it says Actos has the same risks as Advandia. Here is the article I am talking about...

http://www.latimes.com/news/nationworld/nation/la-na-drug7jun07,1,5604283.story?coll=la-headlines-nation

I was concerned about the side effects of Haart Medication, now I have to worry about diabetic medication too? Isn't there anything out there that does the job without fatality from using it? This makes strike 2 for my doctor. I was going to call him but decided to wait til my appointment so we can have a heart to heart. We need to re-evaluate our relationship. He's a sweet man but if he doesn't have my best interests at heart than why am I even seeing him?

Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Miss Philicia

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Re: Is anything safe anymore?
« Reply #1 on: July 30, 2007, 02:10:05 PM »
You're right Queen, though the LA Times article is recent, one would think your doctor would have gotten some advance heads up on something this significant.

At least Rep. Waxman is on the case.  He's a pitbull and will hold 20 hearings on it, I'm sure.  Hopefully some FDA reform will come about because of this if the media pays enough attention, as well as voters.  It's not like diabetes is a niche disease.

Good luck with your doctor.
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #2 on: July 30, 2007, 02:21:27 PM »
Philly,

I was just sitting here thinking I should print out this article and take it. I got to thinking some more...Yeah, I 'm on a roll with all the thinking....I'm sure my doctor has an email addy, maybe not his personal one but I think his office should....I'm gonna check it out...
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Miss Philicia

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Re: Is anything safe anymore?
« Reply #3 on: July 30, 2007, 02:45:20 PM »
When's your next appointment?  If I encountered this I think I'd pick up the phone.
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #4 on: July 30, 2007, 09:07:47 PM »
When's your next appointment?  If I encountered this I think I'd pick up the phone.


My next date with the doc is September 12th...I guess it is still awhile away. I guess I'll get on the phone.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Oceanbeach

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Re: Is anything safe anymore?
« Reply #5 on: July 30, 2007, 09:20:29 PM »
Dear Queen,

Isn't that the truth?... I was prescribed Vioxx, two months before it was pulled off the market.  I was taking it for PN.  That doctor was one of the HIV specialists I met at several "New Horizon of HIV treatments" in the mid-90's and sponsored by APLA.  I would have thought that this doctor would have been aware of the Vioxx risk before prescribing.  He was not my doctor in L.A., but after moving hundreds of miles north to a tiny little community, I was relieved he was there.  Within the first year of living there, I attended his funeral.

After doctor died, I began having increasingly more difficult times with PN.  I reached a point where every step was in screaming agony and it had not been long since I was running two miles every day.  To me, the doctor is like a god, I trust their training and experience but, I do and always will participate in any decision that affects my ability to get around.  Have the best day
Michael

Offline cjc

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Re: Is anything safe anymore?
« Reply #6 on: July 30, 2007, 10:01:19 PM »
Hello Queen. Read your post and the link . That kinda stuff makes really nervous because these Doctors are supposed to know about that kind of thing.Maybe he didn't think the risk was that great  Might be time to try and find another doctor.  Cristy

Offline Miss Philicia

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Re: Is anything safe anymore?
« Reply #7 on: July 30, 2007, 10:27:45 PM »
I heard a report on TV tonight that sounded less alarmist, for what it's worth.
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #8 on: July 31, 2007, 01:06:42 AM »
I heard a report on TV tonight that sounded less alarmist, for what it's worth.

My intentions wasn't to alarm anyone. I was just wondering if anyone saw the point I was making. I know everyone doesn't get congestive heart failure and heart attacks but I would hate to keep taking it not knowing which one I am. The one who does or doesn't get it. I know the doctors have no clue on who will suffer what but it makes me feel like they are playing russian roulette with these medications. And what did this report say Philly?


Christy,

I really hate finding another doctor. He is good and I have been with him for some years now. I can allow for some human error but not at the expense of my life. I will have that heart to heart with him on my next appointment but I will be calling the doctor's office and leave a message, letting him know that I am stopping Actos too and that we must find something else. Maybe my only option will be the shots, I dunno. Moonlight needs to let me know.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Is anything safe anymore?
« Reply #9 on: July 31, 2007, 03:14:27 AM »
Hi Queen~

With insulin shots there are no risks at all, you just have to be good with keeping a schedule, counting carbs and testing sugars.  Hell you could be remote control like me, on a pump, lol.  I could help you a lot if you go on insulin.  I am on an insulin pump which has a button that you push to deliver insulin.  Or ask your doc about "insulin pens," which have very teeny tiny needles.  You prob don't need a pump, you're not that bad off, and you can carry a little pocket memo book to help remind of carb counts.   I have one for fast food, lol!  You have to be a numbers girl, ask your doc how much insulin you would need, how many shots a day, counting carbs, meal planning, testing.  It can be done.  I started when I was 11 yo, and its a way of life for me now.  I have only been on my pump for a year now and I'm still getting used to it (www.myomnipod.com).  Be sure to ask your doc what your Hemoglobin A1C was on your labs and what the normal range is.  This is an average of your blood sugars. 

I'm always here if you need me, GF.

~Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Miss Philicia

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Re: Is anything safe anymore?
« Reply #10 on: July 31, 2007, 11:42:29 AM »
My intentions wasn't to alarm anyone. I was just wondering if anyone saw the point I was making. I know everyone doesn't get congestive heart failure and heart attacks but I would hate to keep taking it not knowing which one I am. The one who does or doesn't get it. I know the doctors have no clue on who will suffer what but it makes me feel like they are playing russian roulette with these medications. And what did this report say Philly?

I was not implying that you were alarmist, but the LA Times article seemed to be.  The report I heard last night was on CNN or MSNBC, and I was in the kitchen at the time so it wasn't like I was taking good notes.  You'll see that the LA Times article is dated 7 June and we're now about 8 months after that, and the report seemed to somewhat calm the early reporting that's all I took from it. 

Then again, maybe the LA Times article simply alarmed ME more than it should have initially.

Oh, here a quick google shows that the CNN report was due to FDA saying Avandia should stay on the shelf.

http://www.iht.com/articles/ap/2007/07/31/business/EU-FIN-COM-Britain-GlaxoSmithKline.php
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Is anything safe anymore?
« Reply #11 on: July 31, 2007, 11:45:56 AM »
Still Queen, this article below leads me to believe your doctor was a bit lax with this issue.

You're not clear on the timeline with your discussions with him but maybe this will assist you in evaluating how he handled it:

http://www.rockymountainnews.com/drmn/local/article/0,1299,DRMN_15_5652377,00.html
"Iíve slept with enough men to know that Iím not gay"

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #12 on: July 31, 2007, 01:51:08 PM »
Thanks for the links, Philly. Your link still gives me cause for concern, even with being on Actos now. I called my doctor's office and he was not in but at another office and to call out there. I call the other office and the nurse was basically saying I should wait til tomorrow and call back to his office. Can you say RUN AROUND..I explained to the nurse my cause for concern and asked if he could still call me even if it is at the end of the day. I am hoping he will call me but has the funny feeling that he may not even get the message.. :(

Modified for short update: My doctor called me. He said he hasn't really heard that when it comes to Actos. I said if I had his email that I would email the articles to him. Of course, he didn't offer it. But he said instead that when he gets back to his office that he will look at what my H1AC are. He told me to keep taking what I have which is the glypizide and that maybe he will have me take a shot at night, once a day. I could live with that but will have to take the diabetes class which what I have been trying to do anyway. I will add more tomorrow because he told me to call him back then...So Moonlight I am going to need you girl.....
« Last Edit: July 31, 2007, 04:00:53 PM by Queen Akasha »
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline jack

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Re: Is anything safe anymore?
« Reply #13 on: July 31, 2007, 06:01:33 PM »
I understand your concern, but its difficult to believe anything the media puts out anymore on the first go around. The first story always seems to be an attempt to panic and put fear in the public in attempt to gain viewers.  Its difficult to find a drug that doesnt have some bad side effects. The FDA works in mysterious ways. I sure wish I had been warned about the side effects of HIV meds. Remember all the hysteria over vioxx? I am not sure but I think Merck has lost only one or two lawsuits to date. Many of the people who took vioxx were older and prone to heart attacks anyways,so its tough to make your case. I took vioxx for over a year because of extreme pain from frozen shoulders side effect from Merck Crixivan.
The media created hysteria over vioxx also caused me to sell all my Merck stock in low 30s, and of course the stock immediately went to 58.

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #14 on: July 31, 2007, 09:11:52 PM »
This is not the first article I have seen on the side effects of Advandia, it was on the evening news as well. What surprises me is the fact that Actos has the same side effects. I would like to know if something I take is going to give me heart failure and since I am getting a number of almost 50 percent, that is enough to not take the chance to see if I'm one of the ones who won't get the heart failure or whatever. From what I have been told, the insulin shot doesn't have those complications. I'd rather take a shot once a day and feel a pinch rather than have a heart attack which would more than likely take me out.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline BT65

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Re: Is anything safe anymore?
« Reply #15 on: July 31, 2007, 09:19:02 PM »
Queen-
  I'm a diabetic also and I take one shot a day, at 8:00 p.m.  The insulin is called Lantus.  It works pretty good.  I wouldn't take that other shit.  I don't know why your doctor would prescribe it to you in the first place.  I can't believe they're still prescribing Avandia.  Now there's something else.  There's always something, ain't there?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #16 on: August 01, 2007, 11:27:13 AM »
Queen-
  I'm a diabetic also and I take one shot a day, at 8:00 p.m.  The insulin is called Lantus.  It works pretty good.  I wouldn't take that other shit.  I don't know why your doctor would prescribe it to you in the first place.  I can't believe they're still prescribing Avandia.  Now there's something else.  There's always something, ain't there?

I talked to my doc this morning and he wants me to start Lantus but I have to take the diabetes class. But do you know he still wants me to take the Actos. I'm not doing that. I will have to take the Lantus once a day then take glypizide and glucophage.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline JamieD

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Re: Is anything safe anymore?
« Reply #17 on: August 01, 2007, 01:48:33 PM »
Queen Akasha-

I don't know what your doctor is like in other situations, but this one seems to me like he is simply not paying attention to the manufacturers warning or your fears. Personally, I would get another doctor if mine did that, but I don't know if you can do that. This is not the first time concerns have been raised over these diabetes drugs. This very same concern was raised earlier in 2003, I believe. I remember that because I was obsessed with the Atkins diet at that time of my life (I was Bulimic) and anything concerning blood sugar fascinated me.
There are many new drugs, as well as older drugs that do not carry these same risks and I do not see why he is not listening to your fears if there are other options out there. Please do your research on other drugs and then talk to him again. He may listen better if you come armed with information.

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #18 on: August 01, 2007, 08:11:31 PM »
Jamie~~

I appreciate your input. But I will stick with my doctor, I think he is still good and he is human. The error wasn't fatal and it was caught before taking them a long amount of time. I was on Advandia for 2 years and the Actos only for a month. He has a good manner and doesn't treat me like a number. I appreciate that about him. And I love him for returning my calls so promptly and doesn't treat me like I am bothering him. Now his nurses, they could use a little help.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Is anything safe anymore?
« Reply #19 on: August 01, 2007, 08:13:58 PM »
Hi Queen~

Yes, I agree, its amazing that your doctor HIMSELF calls you back.  That's very nice to hear!  You know I will be here to help, and Bettytacy is taking the VERY insulin that you are going to go on!  Cool!  I have Humalog in my pump, which works VERY quickly, within minutes, so my system is very sensitive to exercise and changes in activity.  You're going to need to test a lot, which is a good thing, so you can see where you're at.  This is especially important first thing in the morning (fasting blood sugar) and then 2-3 hours after meals.  This post-meal test will help you to see how well the insulin is working.  Now is NOT the time to start an exercise program, it will just throw a wrench into the system!  Just be yourself, do your normal activities, take your normal walks, sleep in............all the same as before.  You want to see what changes the Lantus will make in your usual lifestyle.  Later on you can incorporate activity into your routine if you choose to!  Do you drop low a lot?  I do because I am on "quick acting" insulin.  I always have a couple of granola bars in my purse.  make sure you have something with you, a juice box in your purse, whatever works, about 20-30cHo (carbs).  With insulin in your system now, you always need to be prepared, trust me.  Its better to be safe than on your ass while you try to walk to a friend's house!  Good luck with everything!  I know we'll be chattin' up about how you're doing!  You'll probably have more energy as you get your sugars under better control!  Watch out world, here she comes!!

~Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline JamieD

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Re: Is anything safe anymore?
« Reply #20 on: August 02, 2007, 02:01:58 AM »
It's okay, QA. I just simply don't accept anything less then perfection from my doctors. I change my doctors more often then I change my hair colour. I have had so many doctors since I have lived in Washington DC area, although I think I have settled on the two I have now.
All I was really saying though is that these are not new concerns with these medications, he should have heard something about them by now. That's what worries me. I understand that you like the fact that he did call you back in a timely manner, but from what you said it seemed like he was shrugging off your concerns and that is an absolute no-no for me.

Offline Queen Tokelove

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Re: Is anything safe anymore?
« Reply #21 on: August 02, 2007, 02:23:38 AM »
Moon~~ I actually am excited about taking the class. I have been wanting to do it for so long and it will be at the hospital close to my house. You said yours is fast acting where as Lantus is what slow? Or because it lasts 24 hours? I am a bit confused on that, I need clarity.

Betty~~ I really need to hear from you since you are on Lantus. What is this pen thing like? Moon said the needles are very thin, so I am relieved about that. Where are the best places to inject? What is this Lantus suppose to do? I am thinking because it's only once a day that my sugars are high but not real high. My doctor told me he would like my fasting sugar to be a 100.

Jamie~~ I understand your need for perfection, I think. What sign are you?  ;D As my ID doctor likes to tell me, they are human, not Gods. I have to agree with that. I mean they shouldn't be neglectful but sometimes they make mistakes too. Some fatal, some not. Let me know when you find that perfect doctor, will ya... ;)
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

 


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