Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
April 23, 2014, 01:44:09 PM

Login with username, password and session length


Members
  • Total Members: 22251
  • Latest: dazeel
Stats
  • Total Posts: 621155
  • Total Topics: 46790
  • Online Today: 267
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Numbing, Tingling and Coldness in Limbs? - Atripla to Truvada/Insentress?  (Read 4498 times)

0 Members and 1 Guest are viewing this topic.

Offline Pozibilities

  • Member
  • Posts: 35
Hi-

I am on my third day of the switch from Atripla to Truvada/Isentress.  I notice I am having one of the same side effects as when I started Atripla 6 months ago, but to more noticeable degree - at night about an hour after taking the Truvada tablet and the Isentress tablet I get a tingling numbness in my left leg and foot, and last night my left arm "fell asleep" even though I was not lying on it while sleeping.  Today my left hand got cold for awhile and this evening my leg from the knee down got cold.  Has anyone else had this side effect? 

The only other that I am having is a tad bit of date/time disorientation but that is better today than yesterday. Luckily and happily there are none of the Sustiva wild dreams and other issues I had when taking Atripla.  Also I don't feel any woozy/stupid/dizzy/drunk Sustiva like effects after I take Isentress in the morning. THAT is fantastic news since it looks like I will be able to go through the day just fine hopefully after the disorientation things wears off.

Any input/guidance on the numbness/tingling/coldness is greatly appreciated.  It's a bit worrisome.

Thanks!

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
If I am lying down in bed reading for example, holding up a book, then the arms sometimes get numb and tingly since I am using them to hold up the book and the blood flow is traveling down from the hands.

This did not happen before HIV that I can remember but it has been happening even before I went on meds (I'm also on Isentress/Truvada).

I guess this is considered very mild peripheral neuropathy. In my case I do think it has to do with HIV itself because I have not noticed that it has gotten worse with the meds.

In my own unscientific observation, I have noticed that it happens less when I have exercised. I think maybe it's because exercise gets the blood flowing more.

These symptoms are very common with HIV and it's hard to say how much is due to meds or to HIV itself.

Offline Pozibilities

  • Member
  • Posts: 35
Thank you very much.  I remember mentioning to one of my doctors this when I started Atripla and he said it had nothing to do with the meds.  I didn't believe him then and stilll don't :)  Why else did it start after taking the meds? etc.  I am calling both of my doctors again today.

Did you have side effects when starting Isentress? I am on my third day and still feeling a bit depressed and out of sorts.  But no Sustiva craziness so that is good.

Thanks so much

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad


Did you have side effects when starting Isentress? I am on my third day and still feeling a bit depressed and out of sorts.  But no Sustiva craziness so that is good.
 

There is no one perfect HIV drug with zero toxicity, it just does not exist. Having said that, Isentress, compared to all the others, is pretty damn great. I'm actually more concerned about Truvada and the fact that it can possibly cause kidney damage and bone density loss. Apparently all the HIV meds can cause bone density loss but Truvada has been more implicated than others.

I started meds (Isentress/Truvada) in July 2009 and went undetectable in less than two weeks, my CD4s are now around 686 and I feel great. I really have no complaints, my biggest fear is losing insurance and having to scramble to continue access to health care and meds.

I highly recommend that you take a good vitamin D/calcium supplement, not at the same time that you take your meds, at least two hours before or after. This could help when it comes to bone density loss that the meds can possibly cause (especially the tenofovir in Truvada).

I also recommend that you stay away from all NSAID medications since these are processed through the kidneys, as is Truvada, and you want to spare your kidneys as much toxicity as you can. Drink a decent amount of water, don't overdo it but it's important for keeping your kidneys healthy.  I would also take a good multi-vitamin and probiotics and make sure you exercise.

We are lucky we have access to these excellent meds, which are not perfect but they are better than they have ever been and will continue to improve as the years go on.

As far as depression, this is so common with HIV that it's really hard to say if it's due to meds or just the normal stress of dealing with a chronic condition. Only you can know for sure if it's the meds.  

You are very likely to see excellent lab results after you have given Isentress/Truvada a chance to work their magic.
 

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Truvada/Isentress does cause this, I can confirm, as I've been on both for the last 4 yrs. it's a very nasty side effect  ??? that I've learned to just live with  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Thank you very much.  I remember mentioning to one of my doctors this when I started Atripla and he said it had nothing to do with the meds.  I didn't believe him then and stilll don't :)  Why else did it start after taking the meds? etc.  I am calling both of my doctors again today.


Unless it's truly unbearable I would try exercising and see if it improves before calling your doctor. It's not like there are that many other options for meds. Sure, you can maybe change to Reyataz/Norvir/Truvada but there are no guarantees that the PN will go away and you'll have other minor things to deal with from Reyataz, such as your eyes possibly turning yellow. As mentioned before, no drug is perfect and free of any toxicity.

If it is truly unbearable then you need to get an electric conductivity test done by a neurologist (I forget the technical name for it). My doctor has a neurologist come in like once a month and all his HIV patients are screened by him once a year. They put these wires on your arms and legs and attach it to a machine and see what the reading is. Mine was in the normal range and, as I mentioned, I do have occasional tingling/numbness, it just comes with the territory.

Only you can know the extent of your symptoms and if they are something you can "live with" or if it warrants more medical attention. But slight tingling/numbness pretty much comes with the territory when it comes to HIV.
« Last Edit: January 13, 2010, 11:52:10 AM by Inchlingblue »

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Truvada/Isentress does cause this, I can confirm, as I've been on both for the last 4 yrs. it's a very nasty side effect  ??? that I've learned to just live with  ;D

You never had this before starting Isentess/Truvada? I had it before starting these meds and the meds did not make it any better or any worse.

Pozibilities: I forgot to mention, if you are feeling coldness, this is sometimes due to low levels of thyroid so you should ask your doctor to do a thyroid panel next time you have lab work done.
« Last Edit: January 13, 2010, 11:54:11 AM by Inchlingblue »

Offline Pozibilities

  • Member
  • Posts: 35
You never had this before starting Isentess/Truvada? I had it before starting these meds and the meds did not make it any better or any worse

Hi, thanks so much for the input it is greatly appreciated.  No I didn't have it before the meds.  I also noticed that a sciatica problem came about within a month after starting Atripla.  I have always had a slight vertebrae issue but the sciatic nerve issue never occurred until after starting the meds in June.

Offline Pozibilities

  • Member
  • Posts: 35
Truvada/Isentress does cause this, I can confirm, as I've been on both for the last 4 yrs. it's a very nasty side effect  ??? that I've learned to just live with  ;D

Thanks Dennis, I appreciate the feedback.  I will monitor this and see what happens.  I do not want to go back to Sustiva (Atripla) for any reason in the world, but if things don't settle down after awhile I might have to give it some consideration :(

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
You never had this before starting Isentess/Truvada? I had it before starting these meds and the meds did not make it any better or any worse.

Pozibilities: I forgot to mention, if you are feeling coldness, this is sometimes due to low levels of thyroid so you should ask your doctor to do a thyroid panel next time you have lab work done.

The only thing I still have is Peripheral neuropathy, I should also add that I'm on QUINAPRIL, for hypertension, TRICOR as well as APTIVUS, NORVIR, all of them cause this problem, my Thyroid
level is fine, my problem is side-effects of the PI's and other Drugs I'm on....I've just learned to live with this, along with other annoyances, it's all a part of my disability, I've also learned that if you complain about every little side-effect by meds that you have, you won't have a very good relationship with your ID-Doctor ,most of them are very aware of the many side-effects of different type of Meds, and as a result of this a lot of doctors will be very dismissive of your problem, and will get tired of this, and just pass you on the someone else  ;D
« Last Edit: January 13, 2010, 01:09:07 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Numbing, Tingling and Coldness in Limbs? - Atripla to Truvada/Insentress?
« Reply #10 on: January 13, 2010, 01:23:04 PM »
The only thing I still have is Peripheral neuropathy, I should also add that I'm on QUINAPRIL, for hypertension, TRICOR as well as APTIVUS, NORVIR, all of them cause this problem, 

So it does not sound like the PN was caused by Isentress/Truvada, which before you said it was.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Numbing, Tingling and Coldness in Limbs? - Atripla to Truvada/Insentress?
« Reply #11 on: January 13, 2010, 01:37:08 PM »
So it does not sound like the PN was caused by Isentress/Truvada, which before you said it was.
the PN is caused by yrs and yrs of PI's, and long term-HIV disease the Isentress/Truvada only added to this problem, but, my numbers are good, so, my doctor isn't gonna change my meds due to this, however she's aware of this problem, and it's a lot better than other past-HIV-Meds, like DDI, and some older nukes..
with the Isentress/Truvada I noticed that tingly-coldness feeling in my arms and legs, and I'm not sure if that is PN, it could be Clogged Arteries, are even long term-heart-disease, as most of us LTS are just now finding out, due to yrs. of PI's and other Meds.......
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline MWCLTonline

  • Member
  • Posts: 33
    • Windows Live Spaces - MWCLTonline
Re: Numbing, Tingling and Coldness in Limbs? - Atripla to Truvada/Insentress?
« Reply #12 on: January 18, 2010, 01:17:08 PM »
 ;)
The only thing I still have is Peripheral neuropathy, I should also add that I'm on QUINAPRIL, for hypertension, TRICOR as well as APTIVUS, NORVIR, all of them cause this problem, my Thyroid
level is fine, my problem is side-effects of the PI's and other Drugs I'm on....I've just learned to live with this, along with other annoyances, it's all a part of my disability, I've also learned that if you complain about every little side-effect by meds that you have, you won't have a very good relationship with your ID-Doctor ,most of them are very aware of the many side-effects of different type of Meds, and as a result of this a lot of doctors will be very dismissive of your problem, and will get tired of this, and just pass you on the someone else  ;D

 :D Happy MLK Day, Y'ALL!  What's ur Wildest Dream you'd like to come true!  Ck mine @ http://twitter.com/SoBankQueenBee  :o

Now, to the quex:  Have been on meds since 92, started w/ AZT & 3TC & added Crixivan in '96, have only had 1 major regimen overhaul & now on Viread, Kaletra & Sustiva & like Dennis - BP, Cholesterol, Zoloft & Seroquel.. 13 meds a day!  But I ain't Dead Yet and am the BEST I've been in my life...  As the saying goes, rt Now I cudn't be any better unless I were twins!  Recently, since 1st of the year I've been experiencing that tingling, numbing sensation up & down my left arm & thru the shoulder.  Although this is not unheard of & I realize its the long-term effect of HAART, what's it called again?  So I can tell my HIV Doc when I see her next week??

See my new project @ www.SouthBankHIVe.net !

Take Care!
Michael aka MWCLTonline/SoBankQueenBee
"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Offline PozBrian

  • Member
  • Posts: 200
Re: Numbing, Tingling and Coldness in Limbs? - Atripla to Truvada/Insentress?
« Reply #13 on: January 19, 2010, 11:51:42 PM »
I am taking isoniazid for latent TB which can have PN as a side affect. My Dr proscribed some vitamin B6 to counter act that. It might be some thing to try or at least ask about.

I also have some PN due to nerve damage from a ruptured disk in my back. The worst part about that is painful cramping in my leg if I move wrong or try to do too much with it. Good thing is that since taking the B6 the frequency of the cramping seems to have gone down.
3/8 CD4: 495, 31%, VL UD
2/1 CD4: 564, 20%.VL UD, switching to Issentress & truvada
10/11 CD4: 446, 29%, VL UD
7/11 CD4: 873, 35%, VL UD
4/11 CD4: 573, 34% VL 0
12/10 CD4: 405, 30% VL UD
9/10 CD4: 416, 31% VL UD
5/10 CD4: 393, 29% VL: UD
02/10 CD4: 423, 37% VL: UD
11/09 CD4: 379, 25% VL: UNDETECTABLE!!
10/09 CD4: 245, 25% VL: 87
9/09 CD4: 246, 24% VL: 49!
8/09 CD4: 277, 26% VL: 115
7/09 CD4: 346, 24% VL: 221
6/09 started Atripla
5/09 CD4: 326, 16%  VL:125000
4/09 HIV +, CD4: 397, 16%  VL:195000, PPD reactive

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.