[Viva] new meds

Sat Feb 11 10:30:46 PST 2017

Look forward to seeing you next week at Oak Tree Lisa! Big hugs😘

On Feb 10, 2017 2:18 PM, "Lisa Lagos" <lagos.lisa20 at gmail.com> wrote:

Hi Shelley:

I am sorry to hear of your decline in bone health, especially when your
dancing should almost have guaranteed that your bones would be more dense
than the average woman!
We do need these studies!!  Heck, even vitamins are tailored to gender as
well as age.  (ie. "For Men 50+" etc.)
Aging with HIV is another frontier,  I agree, that needs to be explored.
It's scary out here!

Have a good day and hope to see you in the near future. 😊

Lisa

P. S.  I, too, was told I had Osteopenia way back when the first bone
studies began.  Then I had osteo malasia (bone softening) which affected my
gait etc. Around that  time I had mitochondrial toxicity.

On Feb 9, 2017 11:03 AM, "shelly tognazzini" <shetognazzini at gmail.com>
wrote:

Bone density issues in women non HIV naturally happen with aging, however,
to go from super great bone density to such a decline in only 2 years....
Osteopenia (pre Osteoporosis) was diagnosed.
As many of you know I spent 25+ years dancing, which may produce
arthritis,it doesn't generally amount to extreme bone density issues.
In fact generally the opposite, strong bones, but issues at the joint, ie.
Hips, knees, shoulders, ankles.
My doc really didn't push this particular med, but did say preliminary
results were strong predominantly in men.  Pharma makes it quicker off the
tongue, especially when such a study as Val talked about produces such
strong results.

I really believe we need studies on women on aging with HIV and med studies
that focus on impact on the body. Long term ARV studies on women are so few
to nil. Why should we be making decisions about meds in our bodies based on
male dominated studies?...

Thanks everyone for your support. Hugs, Shelly

On Feb 9, 2017 10:32 AM, "shelly tognazzini" <shetognazzini at gmail.com>
wrote:

Hey Anne,

Thanks so much for your feedback and support!! Initially I requested to
change meds due to a close to 30% decline in my bone density in only two
years. Studies on bone density in men on Truvada have produced evidence
that highlights bone density issues.  No studies on women. My thought was
if men are experiencing this then women will probably more, so I asked
about new meds. Triumeq was suggested I think probably because of pharma
promo, although I trust my doc, it's the way it goes.  Sad but true.
Thanks so much Anne and Val! Will keep you posted. Not going to prolong
this but will wait till end of month and see.  Funny thing is since being
off Truvada, my bones actually feel stronger. My knee injury is much less
reoccurring and overall my body feels stronger.

So nice to hear from you Anne. Great support.  Hugs to all. Will keep you
posted.💞

On Feb 9, 2017 10:18 AM, "anne bonner" <thewoodbuffalo at gmail.com> wrote:

> Hey Shelley. I don't know anything about this drug but I do know I took
> Kaletra for a year and it was the worst year ever with constant nausea and
> diarrhea, I had to take gravol and imodium every day and I felt like shit.
> I told my doc and he just told me my body would get used to it. I was too
> young to know that I could make a fuss and have control over what went into
> my body. When I switched docs and got onto a way better regimen I couldn't
> believe how much better I felt. I think you know more and have more support
> now than I did back then! So you know that if meds aren't working for you,
> tell your doc to switch them! Don't suffer needlessly and don't let your
> doc pressure you into taking meds that suck.  You probably know all this :)
> Also thanks for sharing. I've been considering switching onto this one
> pill but I've been afraid of side effects so I probably won't.
> Also thanks for talking to that doc Val!!
>
> anne
>
> On Thu, Feb 9, 2017 at 8:55 AM, shelly tognazzini <shetognazzini at gmail.com
> > wrote:
>
>> Dear Val,
>> Oh my gosh, thank-you so much.  I will be doing blood work next week and
>> see how it goes. Yesterday I literally had to stay in just to be close to
>> the bathroom.  And sleep has been off as well, although it's never been
>> great it is noticeably changed.
>>
>> Thanks so much Val! I really appreciate your sharing! Great work you've
>> been doing girl. Big hugs
>> Shelly
>>
>> On Feb 9, 2017 2:51 AM, "valerie nicholson" <vjnicholson at live.ca> wrote:
>>
>>>
>>>
>>> Hi Shelly
>>>
>>> I took Triumeq as it is the combo of the two ARV's I was on kivexa and
>>> dolutegravir which i had no problems with .  On the Triumeq i had diarrhea
>>> and could not sleep .... discussing this with the pharmacist she said "I
>>> could not have these side effects as it was the same drugs"  i did not
>>> sleep for 3 months my days and nights got mixed up etc .  I then had a
>>> conversation with Evelyn at OAk Tree and she said it is probably the binder
>>> they use that is causing my side effects.  I am now back on kivexa and
>>> dolutegravir with no problems except the 2- 3 weeks it took the binder to
>>> get out of my system
>>>
>>> At a conference i attended  a Dr was presenting on how great Triumeq was
>>> and they saw only  2% having a side effect
>>>
>>> I asked in the drug  trials   how many were women  he said it was only 3
>>> women
>>> I then asked since releasing the drug had they had reports on side
>>> effects he said yes and they were with women and higher numbers than what
>>> they expected .  He then asked me how i knew this I replied  research and
>>> lived experience
>>>
>>> I hope this helps
>>>
>>> Valerie
>>> ------------------------------
>>> *From:* Viva <viva-bounces at lists.resist.ca> on behalf of shelly
>>> tognazzini <shetognazzini at gmail.com>
>>> *Sent:* Wednesday, February 8, 2017 10:49 AM
>>> *To:* viva
>>> *Subject:* [Viva] new meds
>>>
>>> Hi all,
>>>
>>> I recently, last month changed meds to the new one pill a day  *Triumeq
>>> *  (due to bone density issues I was having on Truvada and Raltegravir)
>>>  I am experiencing some pretty nasty nausea and diarreaha.  Is anyone one
>>> this new med and have any words of experience....?
>>>
>>> Thanks
>>>
>>>
>>> [image: photo]
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