Message From My Doc

[Grinch]

Below is a message I got from my ID doc.  Somewhat ominous for those on PI's.  I normally take a wait and see attitude with this type of announcement, but my respect level for this guy is high.
Please note he states clearly: "Do not discontinue your meds."

On Tuesday, February 23, the Food and Drug Administration issued a warning about the potential of life-threatening heart risks when combining two common HIV drugs.  Both of these drugs, Saquinavir (Inverase) and Ritonavir (Norvir) are protease inhibitors and when used together have been demonstrated to lead to sudden death from a condition known as Cardiac Autonomic Neuropathy (CAN).

As many of you are aware, I have been testing for this over the last year within our office.  Many patients have been discovered to have CAN and treatment with a simple, inexpensive medication can re-stabilize the autonomic nervous system and reverse this high risk of sudden cardiac death.

I would like all my HIV patients who are on Protease Inhibitors to have their autonomic testing repeated if your last test was greater than 6 months ago (prior to August 1, 2009).  I am presently evaluating a new treatment strategy for all patients on protease inhibitor as to whether or not we will continue these or will simply need to discontinue the Ritonavir (Norvir).

The following is a listing of all the protease inhibitors in use.  Check your medications lists located on the bottom of your office visit notes to check if your are on one of these medications.  If so, you need to have your autonomic function rechecked.

Brand Name Generic Name

Aptivus               tipranavir

Crixivan              indinavir

Invirase              saquinavir

Kaletra                lopinavir + ritonavir

Lexiva                 fosamprenavir

Norvir                 ritonavir

Prezista              darunavir

Reyataz              atazanavir

Viracept            nelfinavir

For the time being, do not discontinue you medications, just call the office (xxx-xxx-xxxx) and get scheduled to have your autonomic testing repeated so we can quickly identify those individuals with CAN and get them stabilized with medication.

In the meantime,  I am already working out with other clinicians and researchers to determine what is the best course of action for those of you on protease inhibitors.

[Miss Philicia]

When I read this blurb on aidsmap yesterday the only danger was a Ritonavir-boosted saquinavir regimen.  I fail to understand why your doctor is concerning himself with all PI-based regimens, unless I'm missing something and/or reading your doctor's memo incorrectly.

[J.R.E.]

A little more on that :


http://www.poz.com/articles/invirase_norvir_heart_761_18050.shtml


Ray

[Moffie65]

I don't care what your doctor said, he isn't the one taking the meds.  If my doctor presented me with a proven risk this clear, and didn't take me off it immediately; I'd can his ass.  Just so you know I take this statement seriously, I sold my home and moved to another state to get the doctor I have now, and he just wouldn't leave me hanging like this.  Matter of fact, I was on a deadly saquinavir regimen when I arrived here, and he immediately cut all my meds, and re-ordered another cocktail.  (with all the correct and complete lab workups)

[mecch]

I think that is rude of the doctor to send out a form letter that expects you to read and understand such matters the he considers do serious.  Or, maybe its not serious depends on what medicine you are on.

Couldnt she/he ask his assistant/secretary/nurse to pull out the names who are on the offending drugs and just send it to such people.

[HollyStar]

So, do I have to be worried about Lexiva now? (not on Norvir though) I'm confused.

[Matty the Damned]

So, do I have to be worried about Lexiva now? (not on Norvir though) I'm confused.

No babe. It seems that this concerns only those taking invirase+norvir.

MtD

[veritas]

Grinch,

Although the poz article relates to norvir plus invirase, it seems as though your ID is being extremely cautious should they find this warning to be extended to other PIs with norvir.

I applaud him for that !  He has his patient's interest in mind.

v

[RAB]

Hmm!

I'm on both Invirase and Kaletra (which has the Norvir boost in it).

I already have an appt. for this coming Tuesday (routine), so you can bet I'll be asking about this.

Thanks for the info Grinch.

RAB

[Grinch]

So, do I have to be worried about Lexiva now? (not on Norvir though) I'm confused.

As MtD says Norvir seems to be the med in question.  He's been talking about this whole CAN thing for a while now.  I think this kind of solidified things in his mind.  He mentions that he's working with some other docs and researchers to make sure other PI's aren't an issue.  I gather from talking to him that he isn't a PI fan.

I hadn't seen the POZ article and was simply passing the info along, so that those that take Norvir might speak to their doc.  I certainly didn't intend for this to be a discussion about the quality of care I receive.

Since some questioned to level of a care I receive. I'll say I like the whole body approach he takes considering nutrition, exercise, and complete wellness on top of anti-virals.  Add the fact that he gives his patients his cell# and offers those without insurance a $50.00/month for all visits and labs along with helping patients obtain manufacturers' discounts on meds, via discount cards and other means, I think the guy does a great job.

I'll quit hijacking my own thread and just say It looks like Norvir has been shown to potentially have some issues.  Please see the link provided by JRE.

[Miss Philicia]

Hmm!

I'm on both Invirase and Kaletra (which has the Norvir boost in it).

Yeah, they added Invirase in with my Kaletra-based regimen for a year back in 2005 before I went on Fuzeon. 

I would think if this was a huge problem they would have spotted it before now.  I'm not saying it's not a concern as obviously they're seeing something.  But still to send out a memo like this doctor did (meaning about all PI's) I find strange, alarmist, and not based on reality.