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Author Topic: Having issues since restarting my meds.  (Read 1615 times)

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Offline skeebo1969

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Having issues since restarting my meds.
« on: December 15, 2013, 11:28:14 AM »


   I'm on Truvada and Nevirapine.  I thought the treatment interruption was about 3 months, but was accurately corrected by my wife last night-- It was only 2 months.

   When I restarted I resumed my regular dose of 1 Truvada and 2 Nevirapine.  Since then I have constantly felt major fatigue, and have lower to mid back pain that is deep.

   I initially thought this was all attributed to my body trying to adjust to working the night shift... and, of course, just getting old.  But, it seems like it is progressively getting worse by the day.  After paying more attention to it, I noticed the fatigue really hits me soon after taking one of my doses of nevirapine.

   I don't recall ever having any issues when I originally started this combo.  Does anyone have any insight into this?
I despise the song Love is in the Air, you should too.

Offline newt

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Re: Having issues since restarting my meds.
« Reply #1 on: December 15, 2013, 06:15:50 PM »
Would be prudent to get your kidneys checked -  matt
"The object is to be a well patient, not a good patient"

Offline Ann

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Re: Having issues since restarting my meds.
« Reply #2 on: December 16, 2013, 05:38:02 AM »
Hi Thomas. Did you see your doctor and have labs done before you went back on the meds?

And I agree with Newt - I thought of your kidneys too.

I hope everything is ok and this is just some sort of prolonged glitch over your shift-work that will settle down. Let us know what shakes out, ok?

Give that lovely family of yours (puppy and turtles included) a hug and a hello from me, and consider yourself hugged and helloed as well. :)
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Offline zettainaoru

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Re: Having issues since restarting my meds.
« Reply #3 on: December 16, 2013, 05:55:01 AM »
I also use nevirapine (with AZT and 3TC).
And I think in the box it is written that when u start it, u should take half dose for about two weeks before the full dose.
Same thing after treatment interuption.

Probably your SGOT and SGPT is very high now.
You should have your blood check.
If it is high,in many cases it will get better after a few months.

Offline RapidRod

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Re: Having issues since restarting my meds.
« Reply #4 on: December 16, 2013, 06:15:32 AM »
Tom I have to agree with Newt and Ann about getting your labs. Make sure they check your Vit D level and your testosterone levels tool. You ever have kidney stones?

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #5 on: December 16, 2013, 12:10:04 PM »
   Thanks Newt for the reply.

   I called my doctor this morning.  She immediately sent a lab work request over to Quest, and I just got back from getting it done.  She's having both my liver and kidneys checked out.  She suspects my liver enzymes may be elevated.  I am tired as hell and about to clock out for some much needed sleep.

   Ann, I got back on my meds about 2 weeks ago.  Just before we finally got them I did have a full set of labs done.  I was only off meds for 2 months due to a lapse in my health insurance and some fiasco with Curascript.  I was fortunate that it was such a short time, my viral load only went to 145 and my wife actually stayed undetectable through it all.  Everything else was good.... even my cholesterol, which is surprising with my family history. 

  And Ann, thanks for making me smile this morning... hugs right back at ya.  The family and Zoo are all thriving and doing well. :)

  Rod, I never had kidney stones before but have witnessed an uncle climbing the walls from the pain they caused.  My testosterone levels have always been in the high range.  My vitamin D levels are slightly on the low side and my doctor has advised me to start taking vitamin d3 (?) supplements.

 
I also use nevirapine (with AZT and 3TC).
And I think in the box it is written that when u start it, u should take half dose for about two weeks before the full dose.
Same thing after treatment interuption.

   You are absolutely correct.  After being on this same combo for 5 years I didn't even think to read the insert.  My doctor asked if I started out with half a dose too.  She told me to drop one dose for the next two weeks.

   Once again, thanks everyone!
I despise the song Love is in the Air, you should too.

Online eric48

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Re: Having issues since restarting my meds.
« Reply #6 on: December 17, 2013, 04:17:49 PM »
2 months off meds and no rebound ! Sounds cools

Have you felt better off meds like your brain lighter or something ? Some People who have interrupted treatment in clinical trials were commenting it was so good to get their brains back...

This was not a wanted vacation, but still... Have you felt better or just the same?

Good to hear that you could secure access to meds again

Wishing you well  Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #7 on: December 17, 2013, 05:46:09 PM »


  Thanks Eric.  To be honest I didn't notice any difference at all.  Personally, I would say this combo is very tolerable with very few side effects..... that is if one is smart enough to read the insert. ;)
I despise the song Love is in the Air, you should too.

Offline zettainaoru

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Re: Having issues since restarting my meds.
« Reply #8 on: December 17, 2013, 09:04:25 PM »
yea... no one reads the insert, just like no one reads the agreement when installing something. Just click and click.  ;D

2 months off meds IS really cool. Most will be detected in only couple of weeks.
Did she started early? Or take anything while the interruption perhaps.

My doctors said people that use nevirapine is quite loyal to it, due to the low nervous system side effects. Just that taking it twice a day is not comfortable.

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #9 on: December 18, 2013, 04:15:51 PM »

Did she started early? Or take anything while the interruption perhaps.

No, she found out during a hospital stay many years ago when she was a teenager.  We don't take any supplements.
I despise the song Love is in the Air, you should too.

Online eric48

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Re: Having issues since restarting my meds.
« Reply #10 on: December 19, 2013, 11:24:28 AM »
Just that taking it twice a day is not comfortable.

Twice daily is for treatment naives. After 6 months, even on Viramune, you qualify for treatment experieced and therefore you can take it off-label once daily. As many posters on this forum this is what I did until Viramune XR was available. Once daily is much easier

you will have to scroll down here for details:
tinyurl.com/HIVPharmaCure

Long term users think Viramune is easy to stay with.

in
tinyurl.com/HIVPharmaCure

I have detailed the Viramune Paradox. It is not entirely impossible that long time Viramune users may enjoy lengthy holidays without viral rebound.

The Longest 'recorded' vacation without rebound was the Toronto patient with 56 days. Skeebo and his wife may have set a new benchmarch

Anyway, the most important is that there may come times (surgery, shortage, ...) where treatment interruption is forced onto the patient. Viramune long term treated patient may be in good position to endure this without rebound

Viral failure after interruption, is, unfortunatly more likely with Viramune which has a very long clearance time (up to 1 month)

Skeebo: I was wondering about your wife. Did she resume treatment ? What was her/yours CD4 count before interruption ? was it > 900 ? (if I may ask)

Hope this helps  Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #11 on: December 19, 2013, 12:56:21 PM »


   Her numbers are above 900 as well.  Viramune XR did not agree with me for some reason, so I switched back to 2/day dosing.
I despise the song Love is in the Air, you should too.

Online eric48

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Re: Having issues since restarting my meds.
« Reply #12 on: December 19, 2013, 02:23:50 PM »

   Her numbers are above 900 as well.  Viramune XR did not agree with me for some reason, so I switched back to 2/day dosing.

I have been reading the (few) detailed report about the very few people succesfully controlling the virus after treatment interruption: I have 3 well detailled reports and 2 partial + 1 partial about the Toronto patient (who was not succesfull, but todate, the most succesfully in that league).

Succesfull patients have in common 'high' CD4 count, in the 1000s.

(The same is seen in the Visconti cohort).

Which is why I was asking. I think a > 900 may be a prerequisite or favorable factor for successful TI

Too bad you could not stand Viramune XR (once daily).

Anyway, for many people twice daily is not that bad; after all, if you miss a dose, you miss only 12h.

To me twice daily 200 mg transition to once daily 2x 200 mg then transition to once daily400 mg XR wend smoothly

In order to lower by stock I went on   once daily 2x 200 mg for a day and  once daily400 mg XR for the next day for about 4 months I guess

Sounds like you are not complaining any longer about the back pain.

Hope everything works fine for you

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline zettainaoru

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Re: Having issues since restarting my meds.
« Reply #13 on: December 20, 2013, 05:47:59 AM »
Once a day without the booster is okey, Really?
well, due to the long half life of nevirapine, im sure its ok.

in my case the other two is twice daily (AZT & 3TC) so theres no that option for me.
i probably gonna try it in 2015, when the pharmacy here starts making Truvada 'like' stuff.
 (Since now, only my combo is produced here, others is imported).

btw,any reason why CD4 above 1000 more favorable to TI? any guess?
Isn't cd4/cd8 ratio reflects more about the size of the reservoir?

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #14 on: December 27, 2013, 01:36:51 PM »


   My tests came back and my AST and ALT were elevated 375 and 573 respectively.  She put a rush on today's retest.  I don't feel the same.
I despise the song Love is in the Air, you should too.

Online eric48

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Re: Having issues since restarting my meds.
« Reply #15 on: December 27, 2013, 05:33:28 PM »
Hi,

I once got it explained by my (previous) doc and current doc.

Slightly elevated is not a major concern. Becomes a concern when 5 to 10 TIMES the upper range (as per my 'old' doc)

Slightly elevated transient can be seen in Viramune users ; it usually come back in range (that 's what my current doc told me as one of my markers when a bit overboard)

Yours are ... several times too high (see your lab sheet for range values as they differ from lab to lab). Hence the concern.

Yet, you are in good hands. This is exactly why we get those tests.

Best case scenario, it comes down in range, and you are fine.

Worst case, it does not and doc will discuss options with you

Sustained elevated is a risk factor for a (slow) evolving fibrosis , in turn a risk factor for a (slow) evolving cyrrhosis. So, I hope you can see that you are not there yet.

At least this is my understanding of things after I got my doc to explain me things.

Once, I asked the biologist about these tests, which she kindly explained.

Then she asked me naively : do you know what to do if your numbers are high ?

Huhhhh ? ?

This is why I asked my doc. He reassured me by saying that there is a good reason why Viramune users are being monitored. That being said, if proper monitoring is done, decisions can be taken wisely in a timely fashion.

People under monitoring are at much lesser risk

Hope this helps

Eric



 
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline mitch777

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Re: Having issues since restarting my meds.
« Reply #16 on: December 28, 2013, 10:41:48 AM »

   My tests came back and my AST and ALT were elevated 375 and 573 respectively.  She put a rush on today's retest.  I don't feel the same.

Skeebo,

Wish I could add something of medical value to this conversation. Hope you and your docs get all of this figured out soon.

m.
32 years hiv+ (oct. 2013) with a curtsy.

Offline buginme2

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Re: Having issues since restarting my meds.
« Reply #17 on: December 28, 2013, 10:46:32 AM »

   My tests came back and my AST and ALT were elevated 375 and 573 respectively.  She put a rush on today's retest.  I don't feel the same.

Yikes,  yup those are high.  I hope they get this figured out.  Have they considered ditching the Viramune? 

While your alt/alt is high make sure you stop taking any supplements, booze, Tylenol, uneccesary meds.

Offline skeebo1969

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Re: Having issues since restarting my meds.
« Reply #18 on: December 28, 2013, 01:26:20 PM »
Hi,

I once got it explained by my (previous) doc and current doc.

Slightly elevated is not a major concern. Becomes a concern when 5 to 10 TIMES the upper range (as per my 'old' doc)

Slightly elevated transient can be seen in Viramune users ; it usually come back in range (that 's what my current doc told me as one of my markers when a bit overboard)

Yours are ... several times too high (see your lab sheet for range values as they differ from lab to lab). Hence the concern.

Yet, you are in good hands. This is exactly why we get those tests.

Best case scenario, it comes down in range, and you are fine.

Worst case, it does not and doc will discuss options with you

Sustained elevated is a risk factor for a (slow) evolving fibrosis , in turn a risk factor for a (slow) evolving cyrrhosis. So, I hope you can see that you are not there yet.

At least this is my understanding of things after I got my doc to explain me things.

Once, I asked the biologist about these tests, which she kindly explained.

Then she asked me naively : do you know what to do if your numbers are high ?

Huhhhh ? ?

This is why I asked my doc. He reassured me by saying that there is a good reason why Viramune users are being monitored. That being said, if proper monitoring is done, decisions can be taken wisely in a timely fashion.

People under monitoring are at much lesser risk

Hope this helps

Eric

You're right.  I went through this before, just not so high.... it was definitely below 100.  I knew I wasn't feeling well then (this time around).  When I feel that shitty it always makes me think about Cancer or something equally nefarious.   I feel much better now, normal even.

Skeebo,

Wish I could add something of medical value to this conversation. Hope you and your docs get all of this figured out soon.

m.

Thanks Mitch.  I'm hopeful all this has been fixed through correction of my errors. ;)


Yikes,  yup those are high.  I hope they get this figured out.  Have they considered ditching the Viramune? 

While your alt/alt is high make sure you stop taking any supplements, booze, Tylenol, uneccesary meds.

We haven't considered dropping it yet.  It's funny you mention the booze, I initially thought it was a hangover.  About the exact time I started back taking the meds I had a heavy night with a Crown Royal bottle.  Being a person who hardly ever drinks, and more of a heavy spurt drinker when I do....  I suspect it might have something to do with all this.
I despise the song Love is in the Air, you should too.

 


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