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Author Topic: Epzicom  (Read 8486 times)

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Offline clarke

  • Member
  • Posts: 169
Epzicom
« on: November 03, 2006, 07:56:03 am »
Does anyone out there use Epzicom?  My MD wants me to switch over to it, as she thinks the neuropathy is being caused by the Combivir (I also take Viramune). 

The Neurontin I've been taking for over 6 years has quit working for some reason.  My legs and feet hurt just as bad with or without the Neurontin.  The only relief I get is from the 2mg. of Lorazopam and 25mg of Elavil at night (plus a hit or 2 of some herb).  Other than that, throughout the day, it feels like I'm on needles, and my feet feel like they want to split aprt my inside my shoes.

I've read the Patient Information pamphlet, and I'm not sure I like what I've read in it about the amount and length of the side effects, as well as the severity.

Sorry for the double posting.  For some reason when I post, it will either show an "error" or I have to hit the "refresh" in order to get the page to "flip".
« Last Edit: November 03, 2006, 07:57:54 am by clarke »

Offline allopathicholistic

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  • Posts: 3,258
Re: Epzicom
« Reply #1 on: November 03, 2006, 10:09:22 am »
hi clarke. i take epzicom. any questions just ask  :)

oh, if you double post, you can always just respond to the post you don't want and say this is a double post. do not respond to this post. please go to my other post or something like that

sorry to hear about the pn
« Last Edit: November 03, 2006, 10:18:42 am by allopathicholistic »

Offline Christine

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  • Posts: 1,069
Re: Epzicom
« Reply #2 on: November 03, 2006, 11:18:17 am »
Hi Clarke,
I took Epzicom in the past. I never had any problems with it. Which is rare for me, I usually have some kind of reaction to most of the drugs.

The drug information can be a bit scary. From my understanding, if one has a reaction to Abacavir, the important thing is to stop the med right away, then never take it again. The major problem is from taking the medication after the first reaction.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: Epzicom
« Reply #3 on: November 03, 2006, 01:32:36 pm »
Hello Clarke,

How long have you been on combivir ( or AZT) How about the Viramune ? ? I have read that long term AZT use can possibly cause Neuropathy, but then again, EPIVIR, can also possibly cause neuropathy ! In all reality, many of the HIV medications can cause neuropathy, especially in long term use. And, it can also be caused by the virus itself.

I am also dealing with PN, but it is obviously not as severe as yours. It's painful, but right now, I am dealing, without having to take any medications for it. But I do understand, what you are going through. At one point in 2004, I could barely push the pedals on the car to drive. My feet were painful, when pushed up against anything.

I am also on Epzicom, Viramune, and Viread !! Have been on these meds virtually since starting medication in October of 2003. When Epzicom became available I switched over to it, as it made taking the doses easier ( less pills) My PN also started after I started on medication ( about 5 months). I believe my PN is due to the virus itself, with possibly a little help from the medication. But I also started on meds with a t-cell count of 16, and I was 17 plus years into infection at that point. 21 years now.

Have you ever taken Ziagen (abacavir) before? Also, how are your current numbers? What HIV medications have you been on. I hope you don't mind me asking all these questions, but it may help others give some ideas or thoughts to you.  Wish I could help you out more.



Take care----Ray



« Last Edit: November 03, 2006, 01:34:56 pm by J.R.E. »
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline clarke

  • Member
  • Posts: 169
Re: Epzicom
« Reply #4 on: November 04, 2006, 03:51:01 pm »
I was diagnosed 02/14/94 when I had AIDS Related Dementia.  I was told my CD-4's <50.  I was one sick puppy

I've been on the Combivir/Viramune since 1999.  I had been taking Crix, but it sent me to the hospital (kidney sludge. Boy that H-U-R-T!) after 4 years on it.

My CD-4 is 540 (or 41%?) For some reason, they've been climbing steadily for Jane and myself since we moved up here 3 years ago.

My VL's are <50

I "believe" my PN started with Zerit in 1995.  I got tingling, quit (felt my legs tingling), took it 1 more dang time 2 weeks later, and the PN blew in. I remember before I got the Neurontin, I was using the scooters at Walmart, Lowes, Home Depot and SAM'S. 

Did any of you get any kind of side effect?  I know what the pamphlet said, but there are always those that aren't listed.

Oh, I'm still trying to figure why when I post, the "page" doesn't "shift" to the post.  I have to refresh to see it.  I'm sure it's a software thing, I just gotta figure it out.
 

Offline c69

  • Member
  • Posts: 31
Re: Epzicom
« Reply #5 on: November 05, 2006, 09:00:46 am »
Clarke,

Like some of the other members I also have a form of Neuropathy (mine started pre-med), which in my case was aggrevated by the emtriva I was using. I dropped that for abacavir about one month ago which brought considerable relief. No side-effects from the abacavir yet.
My other meds are viread and sustiva.

These are my  experiences, I think you should just try it and see how it works out, that's all we can do to try to achieve a good troublefree combo for ourselves.

Regard,

C69
Meds since May 2006, Abacavir, Tenofovir, Reyataz & Norvir.

Offline clarke

  • Member
  • Posts: 169
Re: Epzicom
« Reply #6 on: November 09, 2006, 04:41:15 pm »
I'm just really hesitant about trying a different medication, especially since the reason my MD is suggesting the change is "maybe" one of the drugs in the Combivir is contributing to my neuropathy. 

The neuropathy started I think with the Zerit years ago, and within the last year or so, the Neurontin (Gabapentin) has quit working, and my neuropathy has flared up even worse.

I'm also "fearful" of the side effects mainly because should I experience any that I will have to acclimate to, it would put undo extra on Jane (and she has enough as it is with me on LOA from work because of the neuropathy).

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: Epzicom
« Reply #7 on: November 14, 2006, 09:00:40 pm »
Hello Clarke,

Hope all is well with you. Just wondering whats been going on since you started this thread. Did you decide on switching over to the Epzicom, and have you had any kind of relief?

Did you ask your Doctor about the drug "Lyrica" ?


All the best-----Ray
« Last Edit: November 14, 2006, 09:04:01 pm by J.R.E. »
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline clarke

  • Member
  • Posts: 169
Re: Epzicom
« Reply #8 on: November 15, 2006, 04:18:34 pm »
We're still working on deciding if I should switch or not to Epzicom.  I've tried to be one of those "if it ain't broke, don't fix it" kind of people since the diagnoses.  I don't mind trying another med, it's just it seems I have certain sensitivities of some.

Also, this whole "mess" has been, on occassion, a nightmare for Jane, as she has to "pick up the slack" aorund the house when I'm physically having a bad day.

I've tried 25mg. of Lyrica and woke up the next day feeling like I had been on a 3-day drunk.  Actually, I've felt better doing a 3-day drunk than what the Lyrica, Cymbalta, Nortryptiline (they were all 25mg.), and doubling the Gabapentin (2400mg.) have done.

Now, the Neurologist wants me to try Trileptal.  I looked on the sites about it, and there is very little concerning Peripheral Neuropathy (except facial) about it.  I even called them, and they gave me some kind of thing about the MD having the "power" to prescribe what they may work.  But, they couldn't give me any information about it's use for Peripheral Neuropathy.  It seems it's mainly used for Epilepsy and/or Bi-Polar, neither of which I have.

Now, I did get ill from Lithium, and that was how I became diagnosed.  As the Lithium decreased my white cells, it seems it allowed the virus to manifest itself as AIDS Related Dementia.  I had been prescribed Lithium because it was thought I was Bi-polar.  but then, that was the "disorder" to have in the early 90's.

Offline budndallastx

  • Member
  • Posts: 463
Re: Epzicom
« Reply #9 on: December 03, 2006, 10:11:13 am »
I started my meds on Nov 22 and am taking Sustiva / Epzicom.  The Epzicom has not produced any side effects of note.  The problems have been with the Sustiva but they are (thankfully) minimal now.  The two pills once per day has made this a simple (?!?) process and is part of my nightly bedtime ritual. 

There are lots of scarey stories on Epzicom online but you need to weed through them with a grain of salt.  Everyone is different and reacts differently to the drugs.  Yes, some people will have allergic reactions to the drug but it's 5-8% of the people.  The key is to be aware of your body and how your body is reacting to the drugs.  Talk to the doctors staff if you're nervous.  I was scared silly but talked to the nurse.  She interacts with 250 different patients in her charge and not one has ever had a problem with Epzicom.  People will post the horror stories long before they post the good stories.

Good luck!


Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline randym431

  • Member
  • Posts: 1,137
Re: Epzicom
« Reply #10 on: December 04, 2006, 04:15:09 am »
I take epzicom. Reading about the sides can scare you pretty bad, but again only less than 5% have any of the sides. If you are going to have a reaction, it usually come on with in 2 weeks. After 6 weeks, you are considered to be ok with epzicom.
I wish all the meds had so little sides as epzicom, that is if you don’t have an initial reaction. After getting past that point, its like taking a aspirin as to feeling sides. Nothing at all like sustiva, which hits you hard, but usually subsides over weeks of taking it.
Epzicom is one of the newer cutting edge drugs and very good at what it does to the VL.
Its also suppose to be easy on the kidneys.
I recommend it. Just be aware of the first few weeks and how you feel. I also was told those that have the really bad trouble with epzicom are those that started it, had problems, stopped it, then restarted it. Its that second restart that I was told causes the life threaten sides.
I had a lot of worry when I started it, but after two weeks I calmed down. And after 6 weeks, I knew I would do ok with it.
If you start it, just report any of the listed sides right away. Remember only less than 5% have any trouble with it at all.
Diag Sept 2005 VL 1mill, CD4 85, 3%, weight 143# (195# was normal)
Feb 2021, undetectable, weight 215#

Offline edfu

  • Member
  • Posts: 1,090
Re: Epzicom
« Reply #11 on: December 04, 2006, 06:08:03 am »
If you don't have an adverse reaction to the abacavir in Epzicom, it's an excellent med.  I've been on it for 2 years + Sustiva with no drug problems.  For 3 years before that I was on Sustiva + Trizivir, which also contains abacavir, so I knew I didn't have the bad abacavir reaction.

More importantly, after 3 years on the Trizivir, which also contains AZT + 3TC, I was unable to raise my CD4 above the mid 200's.  I decided to drop the AZT and switched to Epzicom, which has the 3TC and abacavir I was already taking in the Trizivir.  So I went from 4 drugs to 3 drugs, yet my CD4, 3 months after starting the Epzicom, increased by 300 to 500. 

From personal experience, I'm not a fan of the AZT that's in your Combivir. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline jjmcm

  • Member
  • Posts: 78
Re: Epzicom
« Reply #12 on: December 04, 2006, 11:15:15 am »
I have been on meds for ten years and just went undetectable (<50) this last year for the first time with Kaletra, Invirase, Combivir, and Fuzeon.  However, I believe the AZT in the Combivir has been making me excessively nauseous, tired, and with little appettite.  Since Viread was in my last failing regimen with Reyataz, my doctor and I decided to swap out the Combivir with Epzicom.

I was reluctant to change anything since I have never really had control of my virus before.  However, the nausea was so bad in the last couple of months with the AZT that I decided to give the Epzicom a try.  I had taken Ziagen for about three months in 1997 and did not have a hypersensitivity reaction even though I was already allergic to bactrim.

I am now on day two with Epzicom.  Of course, I have reviewed all the warnings on the web about it, and that is enough to spark fear.  I guess the one that I am most concerned about is "shortness of breath". 

If any of you have experienced a definitive hypersensitivity reaction to Epzicom, did it happen in the second week as generally described and what exactly did you experience?  Also, if you just had a few mild side effects which eventually went away, what were they?

I guess I really want this med to work out for me.  I just need it to be easier than AZT...

--JJ

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: Epzicom
« Reply #13 on: December 04, 2006, 12:08:09 pm »
I.

I am now on day two with Epzicom.  Of course, I have reviewed all the warnings on the web about it, and that is enough to spark fear.  I guess the one that I am most concerned about is "shortness of breath". 

If any of you have experienced a definitive hypersensitivity reaction to Epzicom, did it happen in the second week as generally described and what exactly did you experience?  Also, if you just had a few mild side effects which eventually went away, what were they?

I guess I really want this med to work out for me.  I just need it to be easier than AZT...

--JJ

Hello JJ,


Wishing you the best. Keep us updated on how you are doing with the Epzicom



Take care of yourself-----------Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline budndallastx

  • Member
  • Posts: 463
Re: Epzicom
« Reply #14 on: December 04, 2006, 02:40:42 pm »
JJ -
Keep an eye out for the symptoms listed on the card supplied with the Epzicom.  The symptions usually appear in Week 2 but can occur as late as Week 6.  Also, remember just because you have the symptoms, it may not necessarily be a reaction to the Abacavir.  It could be something else but get in touch with your doctor ASAP to let him/her determine the correct course of action.

Today is the end of my second week on Epzicom and so far so good.

Good luck and keep us posted. 
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline pozatlguy

  • Member
  • Posts: 10
Re: Epzicom
« Reply #15 on: December 09, 2006, 07:04:58 pm »
Epzicom is the combo pill for Ziagen and Epivir.  When I started to see some lipo problem back in 2000 my doctor switched me from two of the meds I was taking then (Crix and Zerit) to Ziagen and Epivir.  I had also had a kidney stone from the Crix so I was glad to get off of that one.   

I was warned from my doctor about Ziagen (abacavir) just like the warning label read, it was a bit scary I kept looking for something to happen to me.  Fortunately I had no such reaction from it.  When Epzicom became available my doctor made my refills for this one pill.  Not only to make it easier to take (one pill a day) it saved me on my co-pay from two meds down to one.  My meds now are Viramune with Epzicom.  I've never had any liver issues, only things I have issues with is higher then normal Cholesterol and Triglycerides.  They aren't out of the orbit high but always seem to be at the very high end of the normal range.

Good Luck with whatever you decide to do.

-F
HIV + since June 1990, probably got infected 6 months before.
Viramune/Epzicom
9/06 - CD4 720, VL <50, 33.6%
12/13 - CD4 608,  VL <50, 33.8%

 


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