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Author Topic: Shingles Newbie  (Read 5752 times)

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Offline AndyArrow

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  • Posts: 1,196
Shingles Newbie
« on: August 12, 2009, 08:42:44 PM »
First, I noticed this horrible looking thing on my leg.  I thought I must have just banged it into something.  Itched like crazy.  Later on the same thing appeared on my arm.  Again with the itching.  Since I tend to avoid the doctors as much as possible (YES this is extremely stupid ... never claimed to be bright) I just put some antibiotic cream on it and was on my way.  Next, the same thing appeared on my posterior -- right cheek to be precise!  Except this thing was painful and there are a cluster of them.  Standing isn't bad ... but sitting down ... or bending over to pick something up and OUCH!!!

So, after several days of pain I finally break down and see the doc.  He takes one look at my bottom and says "Oh, that's a classic case of shingles".  Then he asked if I had been under any stress lately!  Well, my partner did just have his 3rd open-heart surgery about two weeks ago!  So, stress induced shingles it is!  He also explained that I waited too long to be put on some anti retroviralsfor it (first 48hrs is when they do that ... or so he told me) so I just walked away with some Vicodin for the pain.

When I see the pharmacist he asks about the Shingles vaccine and I explained the doc said no for HIV+ even with good numbers because it was a LIVE virus.  So, now I'm curious -- was the doc spot on or was he being too cautious??

AA
« Last Edit: August 12, 2009, 08:58:15 PM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Shingles Newbie
« Reply #1 on: August 12, 2009, 08:59:40 PM »
 Standing isn't bad ... but sitting down ... or bending over to pick something up and OUCH!!!



AA


Ouch Andy !!

Believe me, I know the pain of shingles. Each time I had shingles, I dabbed ( very gently using a fresh cottonball), calomine lotion on the blisters, to help get them to dry up, and not itch so bad. Wear very loose fitting clothing ( or nothing at all where possible) so theere's no further irritation around any of the blisters. You need to just take it easy for a while.

Everytime I hear of someone getting shingles I squirm a little, because when I had them the pain was pretty much unbearable, for at least 3 days. Hopefully you will get through these quickly.


Wishing you a speedy recovery...

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline TechBearSeattle

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Re: Shingles Newbie
« Reply #2 on: August 12, 2009, 09:52:32 PM »
As for your question, my understanding is that live virus vaccines are a no-no for people with HIV and other auto-immune problems like lupus or anti-rejection meds after an organ transplant. Fortunately, most vaccines are not live virus and are reasonably safe. Always check, though.

Shingles... ouch. I erupted in shingles on the left side of my face right after getting my HIV diagnosis. My doctor thought it was an inner ear infection at first and started me on antibiotics; it was not until after two weeks of excruciating pain and the appearance of blisters in the mouth and on the skin that made him realize what what happening. Five days of antivirals and everything dried up and everything went away. Except the neuralgia: it was three months before the fierce itching went away.

On the upside, I have been told that shingles normally can happen only once. Congradulations: you can now handle even greater stress without having to worry about this. :D
Some days, it just comes down to whether you will laugh or cry. When possible, I chose to laugh.

Offline shreveman

  • Member
  • Posts: 27
Re: Shingles Newbie
« Reply #3 on: August 12, 2009, 10:42:50 PM »
Hi AA:

Sorry to hear about this. I had a case of it when I first was diagnosed being HIV+ many years ago. I didn't know what was wrong and I remember having all this pain and then I broke out really bad, but I got on anti-virals as soon as it happened and had to take them for about 2 weeks or so - I think the treatment has changed since then - newer meds on the market, but I remember what it was like. I hope the pain pills help you. I imagine that is correct about a "live" vacinne versus a "killed" one. Try not to stress about it. Take care. RV

Offline alejandroglz

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Re: Shingles Newbie
« Reply #4 on: August 12, 2009, 10:53:42 PM »
I'm having the same thing.... 2 weeks ago i have some red spots on the elbow and then last week on my arms and legs and is itching and looks some like skin flakes or so, so i dunno what to do...i hate to go to the doctor right now because i don't have insurance ( still on paperwork proses for insurance by the state )....so i just decide to maintain clean and apply A+D cream for the rashes.
BTW whats the difference between shingles and rashes ? or is that the same?

proli I'm just going tomorrow to the Doctor.  :-\ more bills to pay..damn
05/09 poz
05/09 cd4 320 vl 500,000+
06/09 cd4 560 vl 442,000
07/09 cd4 460 vl 125,000 
09/09 cd4 389 vl 140,000
10/09 cd4 349 vl 148,000
11/09 cd4 350 vl 150,000 start Isentress/Truvada (11-18-09)
12/09 cd4 509 vl undetectable! As 12-03-09 + H1N1 vaccine
04/10 cd4 560 vl und
08/10 cd4 580 vl und start Isentress 2*400ml once a day/1truvada

Uno no vino al mundo a sufrir, arriba ese animo!

Offline Joe K

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  • 31 Years Poz
Re: Shingles Newbie
« Reply #5 on: August 12, 2009, 11:46:03 PM »
Andy,

So sorry to hear about the Shingles and all you can do at this point, is to wait them out.  I wish I had better news, but I've had Shingles 3 times.  So much for that you can't get them more than once rumor.  Vicodin and Nytol were my friends for almost two weeks.

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Shingles Newbie
« Reply #6 on: August 13, 2009, 01:35:03 AM »
I've had em 3 times and then I had Bells Palsy, which is possibly related. Both conditions SUCK. Get plenty of rest

Offline rondrond

  • Member
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Re: Shingles Newbie
« Reply #7 on: August 13, 2009, 07:18:18 AM »
Sorry you've got shingles.  :-X

I know, and have had them three times myself (I'm part of a group on that one  ;D

Wishes for a speedy recovery..
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline AndyArrow

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Re: Shingles Newbie
« Reply #8 on: August 13, 2009, 08:48:18 AM »
Thanks everyone --

I sort of knew in the back of my mind that a live vaccine was a no-no but I didn't want it to be true.  :(

Holding off on taking the vicodin during the day and just using it to sleep through the pain.  It's a bitch to sleep because I have to lay on my back elevated because of my esophagus but as soon as my butt hits the bed I want to turn on my side.  >:(

How some of you managed through 3 times I don't know ... Ugh!!!

alejandro -- the centers of mine turned dark and crusty and they are vary painful ... unlike a normal rash that usually just itches and is bright red/pink.  Shingles are a rash caused by the virus that causes chickenpox.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Shingles Newbie
« Reply #9 on: August 13, 2009, 10:27:13 AM »

On the upside, I have been told that shingles normally can happen only once. Congradulations: you can now handle even greater stress without having to worry about this. :D


Not true. What is  true is that you can only get shingles when you've first had chicken pox, and you can only get chicken pox once. You can get shingles any number of times.

As someone who is only recently diagnosed, you should not be posting in the LTS forum. Just letting you know.

alejandroglz, same thing goes for you. As a newly diagnosed person you shouldn't be posting in this particular forum. Please go to the I Just Tested Poz forum to ask your questions about rash/shingles.

Thank you both for your cooperation.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Giblarry

  • Member
  • Posts: 73
  • Desert AIDS Project - Ribbon Man - 2009 Walk logo
Re: Shingles Newbie
« Reply #10 on: August 13, 2009, 02:11:25 PM »
Yeah Andy, 

The shingles vaccine is not indicated for HIV or other immune suppressive conditions. 

Make friends with Acyclovir.  You'll probably need to stay on it.  It helps future events by making them milder and often you won't have future events.  Some people get immediate relief. 

Otherwise, baking soda or calamine are about your only options. 

I understand your stress.  My partner had quintuple 2 years ago.  It ain't so much the surgery that's stressful, it's that when they get home they become a raving bitch.  LoL.  But, who wouldn't?  Still, it's very tough on the partner. 

Happy times
Gib

Offline TechBearSeattle

  • Member
  • Posts: 10
Re: Shingles Newbie
« Reply #11 on: August 13, 2009, 11:28:47 PM »
Not true. What is  true is that you can only get shingles when you've first had chicken pox, and you can only get chicken pox once. You can get shingles any number of times.


It was my GP who told me this. I know that shingles is where the chicken pox virus (or, rarely, the herpes virus) has gone into hiding in nerve tissue and latter, for reasons still unclear, "wake up," start reproducing wildly and begin migrating to the skin. Maybe a given group of nerve tissue can erupt in shingles only once, and shingles in one place does not eliminate the chance of an outbreak elsewhere?

In any case, thanks for the correction. So much for my comfortable delusions.  ::) 
Some days, it just comes down to whether you will laugh or cry. When possible, I chose to laugh.

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Shingles Newbie
« Reply #12 on: August 14, 2009, 03:18:16 AM »
It was my GP who told me this. I know that shingles is where the chicken pox virus (or, rarely, the herpes virus) has gone into hiding in nerve tissue and latter, for reasons still unclear, "wake up," start reproducing wildly and begin migrating to the skin. Maybe a given group of nerve tissue can erupt in shingles only once, and shingles in one place does not eliminate the chance of an outbreak elsewhere?

In any case, thanks for the correction. So much for my comfortable delusions.  ::) 

please don't post in LTS
thank you

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Shingles Newbie
« Reply #13 on: August 14, 2009, 08:06:24 AM »

I understand your stress.  My partner had quintuple 2 years ago.  It ain't so much the surgery that's stressful, it's that when they get home they become a raving bitch.  LoL.  But, who wouldn't?  Still, it's very tough on the partner. 



LOL!!!  Actually, he's being real good ... it helps that we've been through a very similar experience back in '91 when he had a aortic valve replaced.   I think the real stress was caused from when he was still in the hospital and his mother and one of his sisters was staying with me.  Gotta love the in-laws!

The shingles seem about the same as yesterday but I had another good nights sleep thanks to Vicodin  :D

« Last Edit: August 15, 2009, 12:52:51 PM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline sharkdiver

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Re: Shingles Newbie
« Reply #14 on: August 15, 2009, 12:04:32 PM »
I hope you are getting plenty of rest, it is amazing how much shingles zap your energy. I experienced it each time after an extended period of stress and I wasn't listening to my body to slow down and take care of myself. I was given acyclovir the last time, but it was a little too late. I don't know about taking it as a prophylactic dose, as someone suggested. You can always talk to your doc about it.

Hope things get better

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Shingles Newbie
« Reply #15 on: August 15, 2009, 12:58:10 PM »
Thanks,

The doc just said it was too late for it to be effective this time.  He never mentioned it as a preventative.  My energy level does suck right now but that's why god invented coffee.  :D
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: Shingles Newbie
« Reply #16 on: August 15, 2009, 11:04:35 PM »
Andy, I hope things get better for ya soon. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Dwayn20

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  • dbscooter0@gmail.com
Re: Shingles Newbie
« Reply #17 on: August 17, 2009, 04:47:20 AM »
Hey Andy I do feel far you had them six times so far and every Doctor says the same no vacine for you.Wish I could tell more but do know some creams will make the things worse.I know everyone is different but in the matter of shingles don,t wait.Now if your lucky pain will go away with soars if not so lucky you will feel some discomfort way long after.
Dwayne
 
P.S.Hope you get well soon I hope you and pandner are doing well.
Thanks everyone --

I sort of knew in the back of my mind that a live vaccine was a no-no but I didn't want it to be true.  :(

Holding off on taking the vicodin during the day and just using it to sleep through the pain.  It's a bitch to sleep because I have to lay on my back elevated because of my esophagus but as soon as my butt hits the bed I want to turn on my side.  >:(

How some of you managed through 3 times I don't know ... Ugh!!!

alejandro -- the centers of mine turned dark and crusty and they are vary painful ... unlike a normal rash that usually just itches and is bright red/pink.  Shingles are a rash caused by the virus that causes chickenpox.
« Last Edit: August 17, 2009, 04:48:54 AM by Dwayn20 »

Offline Grasshopper

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Re: Shingles Newbie
« Reply #18 on: August 17, 2009, 08:55:31 AM »

How some of you managed through 3 times I don't know ... Ugh!!!



I lost count of all the times I had bouts of shingles....thirty someting times ?
I always keep a spare supply of Valaciclovir at hand. Just the other day I started getting that funny feeling on my right side. The next two days I took the full dosage, today and tomorrow I will take half, and hopefully it's back into hiding for a long while.
Was way ahead this time, no rashes or blisters, just that annoying neuralgia, but that's gone now.

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Shingles Newbie
« Reply #19 on: August 18, 2009, 12:26:52 AM »
Hey Andy,

I just had my first shingles experience two weeks or so before AMG !

They were on the right side of my face and I was not a happy camper. Luckily, the doctor put me on Valcyclovir right away and it seemed to nip it in the bud. Only a minor outbreak on my lips, the neuralgia on the side of the face, but they both passed pretty quickly.

I was lucky.

Hang in there.

HUGS,

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

Offline dixieman

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Re: Shingles Newbie
« Reply #20 on: August 18, 2009, 10:34:22 AM »
Who stated shingles normally only happen once? I'm sorry with our wonderful compromised immune system... shingles can happen as many times as it wants... I've had shingles 3 times... the first time is when my Dad died... 2nd time when my grandmother passed and the 3rd time when my Mom died... anytime your really stressed out the wonderful chicken pox virus returns... its a retro virus... it returns as what we refer to as shingles because it hides in the nerve endings...

Offline Lou-ah-vull

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Re: Shingles Newbie
« Reply #21 on: August 18, 2009, 10:24:12 PM »
Andy, please talk to your doctor about suppressive therapy once this episode passes.  I have had them twice, so trust me they can recur.  I take acyclovir twice daily in the hopes of suppressing a recurrance (or at least minimizing the effect of it.)  This is fairly normal for HIV+ folks who have had shingles.  Hopefully, now that the sores are crusting over the worst of this episode will be over.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline davemartinatx

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Re: Shingles Newbie
« Reply #22 on: August 20, 2009, 01:10:37 PM »
The best solution - both during a shingles outbreak and as a preventative - is L-Lysine. You can get it at any health products store. The last time I got shingles - and it was the very last - was in early 2004. My former step-mother, a nurse-midwife, recommended it. When I went to the store and hesitantly asked for L-Lysine, he asked "to treat shingles?"

The pain stopped overnight and the rash cleared up the next day.

After that, if I felt that "premonition" tingling, I took one or two pills. The tingle went away and the outbreak never occurred.

Why doctors don't know this but nurses DO is beyond my understanding.

Dave

Offline Buzz

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Re: Shingles Newbie
« Reply #23 on: August 21, 2009, 08:13:55 AM »
Hi Andy,

Sorry to hear about your shingles.  I had AIDS related shingles in 1987.  Leasions started at my navel and continued around my left side to the middle of my back.  Severe pain for about 10 days.  Pain continued for months after.  The doctor I saw at the time (hadn't tested for HIV yet) said there was nothing to be done.  Take aspirin!  Things are much better now.  Stress related shingles are a bit different, I understand. 

Acyclovir helps.  I started taking it in 1988 after testing positive, to prevent a recurrence.  Still on it.  So far no more shingles! 

And a note to Gib----I was not a bitch after bypass surgery, just very uncomfortable!  Still can't watch Grey's Anatomy, thank you.

Best of luck Andy.

Buzz

Offline Giblarry

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Re: Shingles Newbie
« Reply #24 on: August 21, 2009, 01:55:58 PM »
(And a note to Gib----I was not a bitch after bypass surgery, just very uncomfortable!  Still can't watch Grey's Anatomy, thank you.)

LoL.  Sorry honey, but when you're not feeling well you are too a bitch.  So am I.  So is everybody else on this thread, I bet. 

Grey's Anatomy?  I didn't know they aired that on HGTV. 

I love you even when you're being a bitch. 

Gib

Offline AndyArrow

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Re: Shingles Newbie
« Reply #25 on: August 26, 2009, 07:31:38 AM »
Thanks for all the kind words & advice.

30+ times Grasshoper ... you deserve some kind of medal or something.  Best I can offer is a great big cyber hug though!  :-*

It's very interesting that many of you are on preventive therapy and the doc never mentioned anything at all about doing that.  I'm currently in the thought process stage of ditching this ID group only a few miles from my home and going into the city (Chicago) 45mins away so not horrible to find better care.

Buzz -- welcome to the forums.  I'm sure you were a wonderful patient.  Mine just had an ALMOST mini crisis.  One of his incisions on his leg was oozing blood & on closer inspection I noticed several of the staples were no longer attached to both sides.   We rushed to the doctors office (they were able to fit us in that day) and they said everything looked good and just took all the staples out a week early!  Crisis over!  :)

Hugs to All
AA

PS  Shingles are pretty much pain free although they still look gross!  >:(
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

 


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