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Author Topic: I am having a crap day. New to the forum - new numbers  (Read 5934 times)

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Offline Stewart

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I am having a crap day. New to the forum - new numbers
« on: August 29, 2007, 01:04:02 PM »
I have been positive since 2000. Been on the same meds. Was ready to throw my life away when iw as diagnosed and three years later I got herpes too.

From what i found out, herpes complicates things.

So, my bloods last year were 793 tcells 31cd4% undetectable.

bloods a month ago were 700 tcells 23cd4% viral load 62

got bloods today 763 tcells 20cd4% undetectable and my testosterone level is 450

I am bummed. SHould I be? I think the % is off or "down" because I am geting over a herpes outbreak. THIS SUCKS. WHY CANT I HAVE A GOOD PERCENTAGE?????? 

WHY is my testosterone dropping? I am only 39!
« Last Edit: August 29, 2007, 02:51:51 PM by Stewart »

Offline thunter34

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #1 on: August 29, 2007, 01:07:44 PM »
You have 763 t-cells / undetectable and you are asking why you can't have good numbers?


Next....
AIDS isn't for sissies.

Offline Jerry71

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #2 on: August 29, 2007, 01:11:02 PM »
Thank You Tim. I agree. Try having 147 cd4 and vl undectable. Been POZ since 2005.

Offline Miss Philicia

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #3 on: August 29, 2007, 01:13:21 PM »
hello Stewart -- first of all welcome to the aidsmeds forums!

Well, really your numbers are quite good and there are many on here who would gladly make a trade I'm sure.  Yes, it would be nicer if your % was higher, or rather trending upwards, but your med regimen does seem to be working with your other numbers so I'm sure that's why you doctor hasn't recommended any change.

Testosterone can and does drop the further one goes along the HIV road.  Mine went way down around my 10-12th year of infection (I don't know exactly what my infection date was) so you should definitely monitor it.  But you ARE monitoring it so that's good.  I forget what the numerical cut off it for it but if you get lower towards it I'm sure you're doctor will put you on hormone replacement therapy to help.  I did that and eventually my testosterone went back to the acceptable range and I currently have been off the hormone therapy for two years.  So don't despair on that front as your body can recover.

And guess what -- I was the same age or slightly younger than you when it happened. 

I'm curious what your diagnosis history is and/or if this is the first time you're seeing numbers move in directions you do not like?  It's easy to see things as worse than they are the first time this happens further along in your diagnosis, especially if you are used to years and years of things improving.
"Iíve slept with enough men to know that Iím not gay"

Offline dixieman

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #4 on: August 29, 2007, 01:47:23 PM »
Afternoon... to answer your question about testosterone... at age 30 the levels start the decent to decrease ... genrally 1% each year... and with hiv or another chronic condition like diabeties etc... it has a greater chance or decreasing more so... get your levels checked... your doctor can do this for you... any treatments if needed will be explained... isn't life full of surprises...

Offline englishgirl

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #5 on: August 29, 2007, 02:08:40 PM »
hi stewart

welcome to the forums, hopefully you will find the all the support and info you need here

first off, as the others have said, i really dont think there is any need for you to worry yourself. if you browse around a bit you will see that in comparison to many your numbers are really good. i for example have never even been near 700 cd4 since my seroconversion in 2005. im not on meds but i know a lot of people who are and 700+ is a really good count. and remember that cd4 readings have a margin of error too - i think it's 50 (but im sure someone will put me right if not) which means that actually your cd may not have changed at all.

as for your % mine has been jumping around a lot too, but my doctor doesnt seem concerned. the reason for this is you only really need to worry when it gets to 12 or 13%, so you have a long way to go yet.

i think the message really is to look at trends rather than blips. and to not get too worried about little changes when you still have plenty of t cells to go round. easier said than done of course!

best wishes
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Offline buca45

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #6 on: August 29, 2007, 02:19:14 PM »
Welcome from one newbie to another one!!
As others have said, your numbers are high and there is no need to worry. I am sure that the bout with herpes did drain your immune system somewhat, but with those numbers, dont be too concerned about it.
On my doc visit on Monday, I was informed that my testosterone level has been decreasing for over a year now and I will  begin therapy for that and for anemia which seems to be worsening now as well.
I have been getting more and more tired and without energy lately, so these two factors do explain the reason.
Cant wait to start those B-12 shots!! now i can actually get some house work done and move around a bit more. As far as the testosterone treatment, not sure about how those work...off to do more research!!
Oh yeah, been poz for 16 years now and only once have my tcells reached nearly 400. They have averaged around 250-350 for years now. No matter what combo i am on, no growth in these numbers.....so stop your whining about having 700+ cells!! LOL...............
"Love and Laughter and Happiness Ever After"

Offline Robert

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #7 on: August 29, 2007, 02:27:13 PM »
HI Stewart.

On  the whole your numbers are strong.  What's important is the viral load.  The key test when on treatment is viral load. This tells you if treatment is working. According to our friend and fellow member,Newt,"... when on treatment and stable and viral load is undetectable and there are no other reasons to be more careful eg hepatitis C coinfection, viral load is the key test.[/u]

When not on treatment, CD4 count is more important than viral load, because it tells you when to start/think about treatment.

Don't know what to say about the testoserone.  My desire went down the toilet when I started meds although the level itself is still within "range."

robert
..........

Offline Iggy

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #8 on: August 29, 2007, 02:40:20 PM »
Stewart -

I'm going to echo others and say that your numbers are a lot better than you are worried about.

My last results were 469cd4's and 80K VL with my % at about 15.

Yet I'm doing good in general.

Don't get hung up on the numbers - it will stress you more than it's worth....Pay attention to them, but don't get stressed on them.

Offline Stewart

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Re: I am having a crap day. New to the forum but not new to HIV
« Reply #9 on: August 29, 2007, 02:47:30 PM »
well, its the percentage that concerns me. It has gone down!

Offline Stewart

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to Philly 267
« Reply #10 on: August 29, 2007, 02:51:09 PM »
hello Stewart -- first of all welcome to the aidsmeds forums!

Well, really your numbers are quite good and there are many on here who would gladly make a trade I'm sure.  Yes, it would be nicer if your % was higher, or rather trending upwards, but your med regimen does seem to be working with your other numbers so I'm sure that's why you doctor hasn't recommended any change.

Testosterone can and does drop the further one goes along the HIV road.  Mine went way down around my 10-12th year of infection (I don't know exactly what my infection date was) so you should definitely monitor it.  But you ARE monitoring it so that's good.  I forget what the numerical cut off it for it but if you get lower towards it I'm sure you're doctor will put you on hormone replacement therapy to help.  I did that and eventually my testosterone went back to the acceptable range and I currently have been off the hormone therapy for two years.  So don't despair on that front as your body can recover.

And guess what -- I was the same age or slightly younger than you when it happened. 

I'm curious what your diagnosis history is and/or if this is the first time you're seeing numbers move in directions you do not like?  It's easy to see things as worse than they are the first time this happens further along in your diagnosis, especially if you are used to years and years of things improving.


i found out i was pos a month after infection in 2000. Started treatment 6 months later. I cycle meds, 3 months on 3 off. but since my percentage has gone down, i cant come off now. I think the herpes has casued it to go down, and I think i had bloods drawn during a mini outbreak. I have been on the same meds since 2000, no resistance thank god. are there any natural ways to boost testosterone? What is your range now? is 451 bad? that is what mine is

Offline Miss Philicia

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Re: I am having a crap day. New to the forum - new numbers
« Reply #11 on: August 29, 2007, 02:55:36 PM »
I cycle meds, 3 months on 3 off.

Uh, why exactly are you doing something like this?  Is your doctor aware of this?
"Iíve slept with enough men to know that Iím not gay"

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #12 on: August 29, 2007, 03:01:20 PM »
Uh, why exactly are you doing something like this?  Is your doctor aware of this?

yes and given my results, he is astounded and has encouraged me to do so. Staying on meds (for me) is toxic and so i cycle them. My tcells never drop below 500 even when I am off, and my VL never goes about 114,000

Offline Stewart

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Iggy are you on meds?
« Reply #13 on: August 29, 2007, 03:04:33 PM »
Stewart -

I'm going to echo others and say that your numbers are a lot better than you are worried about.

My last results were 469cd4's and 80K VL with my % at about 15.

Yet I'm doing good in general.

Don't get hung up on the numbers - it will stress you more than it's worth....Pay attention to them, but don't get stressed on them.

how long have you been positive?

Offline Iggy

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Re: I am having a crap day. New to the forum - new numbers
« Reply #14 on: August 29, 2007, 03:05:13 PM »
nope and 5 years

Offline Miss Philicia

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Re: I am having a crap day. New to the forum - new numbers
« Reply #15 on: August 29, 2007, 03:24:51 PM »
yes and given my results, he is astounded and has encouraged me to do so. Staying on meds (for me) is toxic and so i cycle them. My tcells never drop below 500 even when I am off, and my VL never goes about 114,000

I'm aware of treatment interruptions, but only those where you stop completely, NOT where you go on and off the same thing.  Seems more like a recipe for drug resistance to me.  You yourself question why your % is dropping but don't want to consider this as a reason I assume?  What are your resistance test results like?  When you say that the meds are toxic, do you mean this just in general or that you have side effects from them beyond that which is acceptable?

I still don't see your numbers as being bad, nor does anyone else here, so I really wonder what you want people to say.
"Iíve slept with enough men to know that Iím not gay"

Offline Stewart

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Hi philly
« Reply #16 on: August 29, 2007, 03:29:19 PM »
I'm aware of treatment interruptions, but only those where you stop completely, NOT where you go on and off the same thing.  Seems more like a recipe for drug resistance to me.  You yourself question why your % is dropping but don't want to consider this as a reason I assume?  What are your resistance test results like?  When you say that the meds are toxic, do you mean this just in general or that you have side effects from them beyond that which is acceptable?

I still don't see your numbers as being bad, nor does anyone else here, so I really wonder what you want people to say.

there is no resistance. I go on for like 4 months and go off for 3. I have been resistance tested and there is none. If I were resistant the viral load (result which I got today) would not be undetectable. We think the percentage is down because of a sinus infection and herpes outbreak. Whenever you get ANY infection, the cd4% goes down as long as the infection lasts. any time you take medicines for a long period of time, they have an adverse affect on your body. so i cycle them. I dont like having "junk" in my bloodstream all the time.

Offline ademas

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Re: Hi philly
« Reply #17 on: August 29, 2007, 03:37:57 PM »
there is no resistance. I go on for like 4 months and go off for 3. I have been resistance tested and there is none. If I were resistant the viral load (result which I got today) would not be undetectable. We think the percentage is down because of a sinus infection and herpes outbreak. Whenever you get ANY infection, the cd4% goes down as long as the infection lasts. any time you take medicines for a long period of time, they have an adverse affect on your body. so i cycle them. I dont like having "junk" in my bloodstream all the time.

Yes, but you can develop resistance.
A genotype test will tell you what medications your particular strain might be resistant to now, but it certainly is not a test to tell you there will be no resistance in the future.
The more the virus replicates, the more chances you give it develop resistance to the medications you are on (and particularly those you have recently stopped.)

Offline Stewart

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ademas, I understand all of that but
« Reply #18 on: August 29, 2007, 03:40:55 PM »
Yes, but you can develop resistance.
A genotype test will tell you what medications your particular strain might be resistant to now, but it certainly is not a test to tell you there will be no resistance in the future.
The more the virus replicates, the more chances you give it develop resistance to the medications you are on (and particularly those you have recently stopped.)

i have been on the same meds for nearly 8 years. 8....years of off and on. when i go back on - after a break - i am undetectable. they work. I am not resistant, after 8 years.  The doc is amazed!

Offline Miss Philicia

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Re: I am having a crap day. New to the forum - new numbers
« Reply #19 on: August 29, 2007, 03:47:46 PM »
Have you been doing this cycling stuff for 8 years steadily, or how long?

It's interesting for sure, but so far outside the normal experience it can easily be written off as an aberration.  I have a friend who fiddle around greatly with his HIV meds for about 7 years with no resistance issues, and now has been off of them completely for 2 years.  His numbers ARE slowly dropping but this isn't surprising.

I'd still hesitate to attempt this myself, but then I've adhered completely over the past 14 years and STILL have developed resistance to all PI's.  Then again, my experience is an aberration somewhat.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: I am having a crap day. New to the forum - new numbers
« Reply #20 on: August 29, 2007, 04:01:48 PM »
I don't understand the cycling on and off either.  I'm really surprised there is no resistance.  I've been on meds since 1991 (of course AZT was being megadosed a lot then) and I'm resistant to a ton of things.  Your numbers are excellent.  I wouldn't worry about this.  If the percentage was down, it's probably, like you said, because you had a herpes outbreak.  %s can jump around sometimes.
  Oh, and welcome to the forums.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Stewart

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philly, about my breaks
« Reply #21 on: August 29, 2007, 04:07:34 PM »
Have you been doing this cycling stuff for 8 years steadily, or how long?

It's interesting for sure, but so far outside the normal experience it can easily be written off as an aberration.  I have a friend who fiddle around greatly with his HIV meds for about 7 years with no resistance issues, and now has been off of them completely for 2 years.  His numbers ARE slowly dropping but this isn't surprising.

I'd still hesitate to attempt this myself, but then I've adhered completely over the past 14 years and STILL have developed resistance to all PI's.  Then again, my experience is an aberration somewhat.

i think they keep the virus off balance. Now i am not recommending that you do it, but it seems for me that breaks allow dont allow the virus to fully "understand and adjust" to the meds I am taking. I cant explain it, but 8 years into it, no resistance.

Offline Miss Philicia

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Re: I am having a crap day. New to the forum - new numbers
« Reply #22 on: August 29, 2007, 04:09:36 PM »
Well, we can invent tons of theories about "exception to the rules" type stuff and it doesn't mean squat unless you can replicate it in large groups of people.  This reminds me of the hydrodroxurea and videx argument I'm having in another thread.
"Iíve slept with enough men to know that Iím not gay"

Offline thunter34

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Re: I am having a crap day. New to the forum - new numbers
« Reply #23 on: August 29, 2007, 04:10:52 PM »
When I've even had unintentional breaks over the last few years (of several days to about 2.5 to 3 weeks) the meds have made my stomach upset when I restarted.  I would've thought restarting after a break would've caused that initial adjustment sickness to start all over again.

No thanks to going through that over and over.

I've resigned myself to the fact that I am now toxic for the long haul- either by virus or medicine.

I have a life history of putting junk into my system.  I see no reason to stop now.
AIDS isn't for sissies.

Offline Stewart

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hi philly. another response
« Reply #24 on: August 29, 2007, 04:14:01 PM »
Well, we can invent tons of theories about "exception to the rules" type stuff and it doesn't mean squat unless you can replicate it in large groups of people.  This reminds me of the hydrodroxurea and videx argument I'm having in another thread.

the 'exception to the rule" thing i suppose applies to me, and it does me squat to me because, thank god, I have not had to switch meds....in 8 years!!!!

I feel pretty damn good about that, so its significant to me

Offline Stewart

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i guess i am lucky
« Reply #25 on: August 29, 2007, 04:14:57 PM »
When I've even had unintentional breaks over the last few years (of several days to about 2.5 to 3 weeks) the meds have made my stomach upset when I restarted.  I would've thought restarting after a break would've caused that initial adjustment sickness to start all over again.

No thanks to going through that over and over.

I've resigned myself to the fact that I am now toxic for the long haul- either by virus or medicine.

I have a life history of putting junk into my system.  I see no reason to stop now.


because when i restart my meds, its just like taking vitamins. I feel totally fine.

Offline thunter34

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It gets really confusing
« Reply #26 on: August 29, 2007, 04:16:59 PM »
When we keep changing to thread titles.

Doesn't it?
AIDS isn't for sissies.

Offline bryonut

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Huh? What?
« Reply #27 on: August 29, 2007, 04:23:09 PM »
Stewart

What meds are you on /off /on /off?

bry

Offline Stewart

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i am on epivir viramune and zerit for those who want to know
« Reply #28 on: August 29, 2007, 04:32:33 PM »
Stewart

What meds are you on /off /on /off?

bry

Offline Miss Philicia

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Re: I am having a crap day. New to the forum - new numbers
« Reply #29 on: August 29, 2007, 04:35:15 PM »
Stewart, when you do things like place your answer in the sub thread title like that it's confusing to follow.  Use the "quote" function like you did but write your response BELOW that block.  Thanks.
"Iíve slept with enough men to know that Iím not gay"

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #30 on: August 29, 2007, 04:44:39 PM »
ok sorry. i am new to this. dont know how it works

Offline thunter34

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Re: I am having a crap day. New to the forum - new numbers
« Reply #31 on: August 29, 2007, 04:46:53 PM »
ok sorry. i am new to this. dont know how it works


like so.   it's ok...we'll allow for a learning curve.   ;D

AIDS isn't for sissies.

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #32 on: August 29, 2007, 04:49:12 PM »

like so.   it's ok...we'll allow for a learning curve.   ;D



got it. i am still bummed about my percentage though. lol

Offline thunter34

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Re: I am having a crap day. New to the forum - new numbers
« Reply #33 on: August 29, 2007, 04:54:41 PM »
with all due respect:    boo.   hoo.


 ;D

your #s are fine, man.


AIDS isn't for sissies.

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #34 on: August 29, 2007, 04:55:39 PM »
with all due respect:    boo.   hoo.


 ;D

your #s are fine, man.




thanks hunter. I admire your sense of humor, but they are trending downward. I HOPE its the herpes and not anything else

Offline Basquo

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Re: I am having a crap day. New to the forum - new numbers
« Reply #35 on: August 29, 2007, 08:07:03 PM »
thanks hunter. I admire your sense of humor, but they are trending downward. I HOPE its the herpes and not anything else

Welcome Stewart!  Are you on any medication for herpes?

Offline aztecan

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Re: I am having a crap day. New to the forum - new numbers
« Reply #36 on: August 29, 2007, 09:42:15 PM »
Hey Stewart,

I'll just say hi, and welcome to the forums.

I, too, am amazed at your luck with the on and off meds thing. I also am repeatedly surprised a how many people are still taking Zerit.

But, whatever works. Your numbers are just fine.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #37 on: August 29, 2007, 10:11:04 PM »
Welcome Stewart!  Are you on any medication for herpes?

hi basquo. i was on valtrex but i prefer the holistic route. I am going back to L Lysine, the amino acid. If I take 1000 mgs twice a day i have one outbreak per year. saves my liver from having to process valtrex

Offline Stewart

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Re: I am having a crap day. New to the forum - new numbers
« Reply #38 on: August 29, 2007, 10:12:12 PM »
Hey Stewart,

I'll just say hi, and welcome to the forums.

I, too, am amazed at your luck with the on and off meds thing. I also am repeatedly surprised a how many people are still taking Zerit.

But, whatever works. Your numbers are just fine.

HUGS,

Mark



thanks mark. i heard someone else ask me why i am still on zerit. what is bad about it? any new meds out?

Offline aztecan

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Re: I am having a crap day. New to the forum - new numbers
« Reply #39 on: August 29, 2007, 10:28:42 PM »
Hey Stewart,

Zerit is one of the main culprets that causes peripheral neuropathy. Here is a quote from the drug information section here;

" A common side effect of Zerit is peripheral neuropathy, which can result in pain, tingling, numbness, or burning in the hands and/or feet. Stopping Zerit and starting another nucleoside reverse transcriptase inhibitor (NRTI) that does not usually cause peripheral neuropathy Ė for example, Retrovirģ (AZT) or Ziagenģ (abacavir) Ė is often the best way to stop peripheral neuropathy."

Some people have developed debilitating PN while on Zerit, far more so than on any of the other meds.

But, not everyone gets side effects, as many of us are constantly pointing out. So, if it hasn't done it to you yet, it may never do so.

Just keep an eye out for the symptoms of PN: numbness or tingling in the hands or feet, a burning sensation on the soles of your feet. etc.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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