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Author Topic: Shingles  (Read 8936 times)

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Offline Jim Allen

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Shingles
« on: October 14, 2017, 04:33:55 pm »
 >:(

F*****g shingles again. Back is killing me and my arm feels likes it going to drop off, the part that really annoys me is the one in the ear   :'(

Oh well as I am so fond of telling others, "move on with your life" so picked up the old calamine lotion for the back and ill have to ignore the ear as much as I can.

Jim   
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Offline kentfrat1783

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Re: Shingles
« Reply #1 on: October 14, 2017, 04:45:58 pm »
Jim,

I can’t say I know what you’re going through but let’s hope it doesn’t last long.

Trying to ignore it will be easier said then done.

Other then the calamine  lotion, anything else you can do?

Kenneth
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Jim Allen

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Re: Shingles
« Reply #2 on: October 14, 2017, 04:52:40 pm »
Thanks.

Other then the calamine  lotion, anything else you can do?

Kenneth

Not much, rest and pain management, loose clothing for comfort. I already take pain meds so no need to run out for more.

There are treatments that reduce the time and severity however you need to take them early on to have any affect so within the first 2-3 days and I've passed that window   

Its my own fault for not acting sooner and work stress has me run down at the moment so that is I am presuming the trigger and its also my own fault for not taking care of myself better.

Jim

https://www.poz.com/basics/hiv-basics/herpes-zoster-virus-shingles
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Offline leatherman

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Re: Shingles
« Reply #3 on: October 14, 2017, 05:42:14 pm »
F*****g shingles again.
ugh.
I've had a patch of shingles on my right hip a couple of times. But that was back in my "aids days". Back then I was just trying not to go to a hospital again, so shingles, while itchy AF and painful, wasn't all that - or at least that's what I tell myself about these old memories. hahaha

There are treatments that reduce the time and severity however you need to take them early on to have any affect so within the first 2-3 days and I've passed that window
ah. acyclovir is my fav. Not only does it help with shingles but it is a mild antiretroviral, so WooHoo! it helps with the HIV too.

while I've only had the big shingles a couple of times (and that was a while ago); unfortunately, I do have a case of "recurring shingles" - in one of the fingers of my left hand, of all places.  :o Until I began taking a daily dose of acyclovir (2X400), I had a flair up every 4-6 weeks. Painful blisters preceded by intense itching. Now, all I have are some occasional tingles in my finger, and a few slight stabs of pain in my hip. it is amazing (in a bad way LOL) how sometimes these damaged nerves can still have these "phantom" feelings

Hope everything (blisters and pain) clears up soon for a short bout this time ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Lightfighter

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Re: Shingles
« Reply #4 on: October 14, 2017, 06:57:10 pm »
My mom is elderly and had them earlier this year. I don't personally know your pain thankfully, but I remember how miserable she was.  You have my thoughts and prayers.

Her doc gave her gabapentin and she said it seemed to work pretty decent. I tried spraying bactine on her since it has an anesthetic in it. She said it worked very well in reliving the pain and itch on the surface, but not so much with the shooting nerve pain.

Offline Tonny2

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Re: Shingles
« Reply #5 on: October 14, 2017, 08:50:10 pm »


         ojo        hola jim...i'm sorry to hear about your shingles, i have hotten them three times, so i know what you are going through, i know you can handle thism just hang on, eventually, they will go away...hugs my friend                                     ojo

Offline daveR

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Re: Shingles
« Reply #6 on: October 14, 2017, 10:57:46 pm »
I have never had shingles so don't know the pain first hand but did just google it. It doesn't sound pleasant at all and it also looks as if there is not a great deal you can do about it. I did see there is an injection but it is not recommended unless you are over 50 or even 60 so my guess is the injection has some nasty effects also.

Good luck with the pain management. I shall sit and wait for my turn as I have had chicken pox about 20 years ago.

Why is it that even with normal cd4 counts we positive people appear to be more open to certain conditions than others? Managing the virus itself is challenge enough.

Offline harleymc

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Re: Shingles
« Reply #7 on: October 14, 2017, 11:55:44 pm »
Get better soon.

It is worth while considering taking acyclovir as prophylaxis against shingles. I took it for years.

Offline Grasshopper

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Re: Shingles
« Reply #8 on: October 15, 2017, 04:48:44 am »
Thanks.

Not much, rest and pain management, loose clothing for comfort. I already take pain meds so no need to run out for more.

There are treatments that reduce the time and severity however you need to take them early on to have any affect so within the first 2-3 days and I've passed that window   

Its my own fault for not acting sooner and work stress has me run down at the moment so that is I am presuming the trigger and its also my own fault for not taking care of myself better.

Jim

https://www.poz.com/basics/hiv-basics/herpes-zoster-virus-shingles

Jim,
I can testify that altough late, Valaciclovir does lessen the pain en shorten the outbreak.

Valaciclovir is much much gentle than the "old" version = aciclovir.


Offline Jim Allen

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Re: Shingles
« Reply #9 on: October 15, 2017, 05:14:03 am »
@Tonny2 @harleymc @Lightfighter @leatherman @Grasshopper Thanks  :)

while I've only had the big shingles a couple of times (and that was a while ago); unfortunately, I do have a case of "recurring shingles" - in one of the fingers of my left hand, of all places.  :o Until I began taking a daily dose of acyclovir (2X400), I had a flair up every 4-6 weeks. Painful blisters preceded by intense itching. Now, all I have are some occasional tingles in my finger, and a few slight stabs of pain in my hip. it is amazing (in a bad way LOL) how sometimes these damaged nerves can still have these "phantom" feelings

Hope everything (blisters and pain) clears up soon for a short bout this time ;)

Same here with the odd flare up and also I have a patch on my back that has phantom pains from my first outbreak. Its a pain in the backside but normally the reoccurring flareup is just a little bit patch, this is a bigger outburst although not as bad as my first outbreak in 2007 I admit.


I have never had shingles so don't know the pain first hand but did just google it. It doesn't sound pleasant at all and it also looks as if there is not a great deal you can do about it. I did see there is an injection but it is not recommended unless you are over 50 or even 60 so my guess is the injection has some nasty effects also.

Good luck with the pain management. I shall sit and wait for my turn as I have had chicken pox about 20 years ago.

Why is it that even with normal cd4 counts we positive people appear to be more open to certain conditions than others? Managing the virus itself is challenge enough.

Well taking a step back shingles is not an OI but to use OI's just as a quick example. With higher CD4 cell counts and a UD status we as a group statistically have less problems with OI's, however it does not mean problem free, they can occur at any stage regardless of CD4 counts the odds are simple far far less of it happening. 

With the shingles (not an OI) but it is something as a group we tend to be more prone to having, I am not sure why. Without reading up on anything new,I have always believed its because CD4's are not the part of the immune system that keeps the herpes virus that causes shingles outbreaks suppressed/in check, so high CD4's mean nothing much and our immune systems are always engaged with weaknesses not measured but that is just my thinking not fact of course.

For me the trigger seems to be (anecdotal I know) for my normally smaller recurring shingles outbreaks is stress and lack of sleep/rest.

Jim

https://www.poz.com/basics/hiv-basics/herpes-zoster-virus-shingles
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Offline leatherman

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Re: Shingles
« Reply #10 on: October 15, 2017, 08:38:46 am »
Well taking a step back shingles is not an OI

shingles is an incredibly common worldwide illness where the older you get, the more likely you are to have an outbreak (and perhaps, multiple outbreaks)
Quote
It is estimated that about a third of people develop shingles at some point in their life.[1] While more common among older people, children may also get the disease.[9] The number of new cases per year ranges from 1.2–3.4 per 1,000 person-years among healthy individuals to 3.9–11.8 per 1,000 person-years among those older than 65 years of age.[12] About half of those living to age 85 will have at least one attack, and less than 5% will have more than one attack
https://en.wikipedia.org/wiki/Shingles

some more info related to PLWH
Quote
New cases of herpes zoster, better known as shingles, appear to be on the decline among people living with HIV, but rates are still higher than those seen in the general population, according to Johns Hopkins University School of Medicine data published online ahead of print by the Journal of Acquired Immune Deficiency Syndromes.
https://www.poz.com/article/hiv-herpes-shingles-22670-3073
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Wade

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Re: Shingles
« Reply #11 on: October 15, 2017, 08:56:24 am »
Hope you get some relief too Jim, I take Valacyclovir also and have for years.
I had a badly injured cornea that resulted in shingle/herpes on my eye ball and I went blind, thus the cornea transplant.

I never had an outbreak before nor have I had one since.
Have you thought of taking a maintenance dose ?

« Last Edit: October 15, 2017, 09:43:10 am by Wade »
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Offline Jim Allen

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Re: Shingles
« Reply #12 on: October 15, 2017, 02:17:13 pm »
Have you thought of taking a maintenance dose ?

Thanks, I don't know if they offer that in Ireland to be honest. It can be pretty backwards at times with preventive medication but I might ask. In the meantime I am just trying not to think to much about it, rock on netflix and eating ice cream to make myself feel better, emotionally.

Jim
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Offline kentfrat1783

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Re: Shingles
« Reply #13 on: October 15, 2017, 02:56:33 pm »
Jim,

What's your favorite type of ice cream? 

Then again I could go for some cookies-n-cream ice cream.  :)

Kenneth
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Jim Allen

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Re: Shingles
« Reply #14 on: October 15, 2017, 03:02:28 pm »
Vanilla  :)

lol, No its raspberry ripple at the moment. I have some frozen yogurt as well, first time trying it but to be honest i am not seeing why people like it. 

Jim
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Offline kentfrat1783

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Re: Shingles
« Reply #15 on: October 15, 2017, 03:26:15 pm »
Raspberry ripple does sound good.  Not sure if I've seen that one in store.  Then again I've taken a lot of the sweets out of my diet over the past few years.  Now that doesn't say I don't enjoy it every now and then.

I'm not a big fan of the frozen yogurt.  Then again could just be that we haven't found the right one yet.
Date - CD4 - Percent - VL
08/23/23 - 366 - 26%
06/20/23 - 349 - 21% - UD
04/15/23 - 229 - 19% - <20
11/14/22 - 486 - 24% - 73
10/12/22 - 316 - 19% - <20
06/20/22 - 292 - 21% - <20
01/25/22 - 321 - 22% - <20
09/22/21 - 278 - 19% - <20
02/02/21 - 225 - 19% - <20
06/08/20 - 257 - 20% - <20
03/17/20 - 285 - 19% - 101 (2.00)
12/17/19 - 290 - 20% - <20
09/17/19 - 218 - 16%
06/18/19 - 173 - 16% - <20
03/13/19 - 170 - 16% - <20
January 2019 - Started Triumeq
12/05/08 - 174 - 18% - <20
08/28/18 - 166 - 15% - <20
05/08/18 - 106 - 11% - <20
03/05/18 -   90 - 10% - <20
12/11/17 -   60 -   8%
09/07/17 -   42 -   6% - 54 (1.70)
May 2017 - Started Atripla
05/11/17 -    2 -    1% - 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: US

Offline Jim Allen

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Re: Shingles
« Reply #16 on: October 15, 2017, 03:35:08 pm »
I'm not a big fan of the frozen yogurt.  Then again could just be that we haven't found the right one yet.

True. I've only tried it once, maybe I need to try the more fancy flavours 
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Offline CaveyUK

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Re: Shingles
« Reply #17 on: October 15, 2017, 05:49:56 pm »
shingles is an incredibly common worldwide illness where the older you get, the more likely you are to have an outbreak (and perhaps, multiple outbreaks)https://en.wikipedia.org/wiki/Shingles

some more info related to PLWHhttps://www.poz.com/article/hiv-herpes-shingles-22670-3073

3 people in my office have had shingles in the last couple of months.

It does seem to be very common.
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Offline Lightfighter

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Re: Shingles
« Reply #18 on: October 15, 2017, 10:32:44 pm »
So riddle me this.

We can't take the shot since it's a live, although weakened, virus because of HIV. Why not?  If one is UD with "normal range" CD4's what makes it riskier for me versus someone who is neg? 

This is for my own knowledge. I've never really thought about that until now. Why are we considered immuno-compromised with numbers in the normal range and UD? 

Am I reading too far into it?

Offline Jim Allen

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Re: Shingles
« Reply #19 on: October 16, 2017, 12:41:26 am »
Why are we considered immuno-compromised with numbers in the normal range and UD?
https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

With early and effective treatment I don't think people are really,that's my opinion, “compromised” would be a CD4 count of lower than 200 or less than 15%.

However starting treatment before HIV has had a chance to do serious damage is a key thing, its relatively new to start treatment sooner and late diagnosis is still the trend.

Also OI's and also some non-aids defining issues remain an increased risk for us as a group and as you belong to that group you are classed in with the everyone else no matter how healthy you are.   

All i do know is having HIV and being classed as immune deficient by the government gives me access to a free flu shot that I am happy to take that  ;)

Look the odds of picking up an OI dramatically reduce with treatment, suppressing VL's allowing CD4's to increase and the body to heal, but as a group we still statistically have higher risks compared to our HIV negative counter parts and you are classified as part of that group, if it applies to you or not. Also there are non aids defining matters to deal with such as continued inflammation and the impact that has. So being UD and having good CD4 levels does not tell the full story of the damage to the immune system and/or the body.

Personally reading stories and the damage done to people before starting treatment its no surprise some of it is permanent, besides all of this we can't ignore the challenge that not all patients are being treated or reach UD. Very sad sate of affairs :'(

We can't take the shot since it's a live, although weakened, virus because of HIV. Why not?

You can. Its also recommended however you should at least have a CD4 count of  200 or a CD4% of 15%

Recent thread: https://forums.poz.com/index.php?topic=67712.0
CDC: https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

Am I reading too far into it?

Yeah, but nearly all of us do. You can notice from my answers I certainly have done at some stage.
« Last Edit: October 16, 2017, 01:07:46 am by JimDublin »
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Offline lightalltheway

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Re: Shingles
« Reply #20 on: October 16, 2017, 02:47:47 am »
Hi Jim,

Just a line to wish you a fast recovery .. please stay well and don't overthink.

Prince

Offline Lightfighter

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Re: Shingles
« Reply #21 on: October 18, 2017, 05:57:07 pm »
Thanks Jim. I was thinking along those lines.

I didn't know about the updated guidance for the shot. My ID and GP doc are all on board with the no live vaccines.  I'll bring it up at my next appointment.







https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

With early and effective treatment I don't think people are really,that's my opinion, “compromised” would be a CD4 count of lower than 200 or less than 15%.

However starting treatment before HIV has had a chance to do serious damage is a key thing, its relatively new to start treatment sooner and late diagnosis is still the trend.

Also OI's and also some non-aids defining issues remain an increased risk for us as a group and as you belong to that group you are classed in with the everyone else no matter how healthy you are.   

All i do know is having HIV and being classed as immune deficient by the government gives me access to a free flu shot that I am happy to take that  ;)

Look the odds of picking up an OI dramatically reduce with treatment, suppressing VL's allowing CD4's to increase and the body to heal, but as a group we still statistically have higher risks compared to our HIV negative counter parts and you are classified as part of that group, if it applies to you or not. Also there are non aids defining matters to deal with such as continued inflammation and the impact that has. So being UD and having good CD4 levels does not tell the full story of the damage to the immune system and/or the body.

Personally reading stories and the damage done to people before starting treatment its no surprise some of it is permanent, besides all of this we can't ignore the challenge that not all patients are being treated or reach UD. Very sad sate of affairs :'(

You can. Its also recommended however you should at least have a CD4 count of  200 or a CD4% of 15%

Recent thread: https://forums.poz.com/index.php?topic=67712.0
CDC: https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

Yeah, but nearly all of us do. You can notice from my answers I certainly have done at some stage.

Offline Jim Allen

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Re: Shingles
« Reply #22 on: October 18, 2017, 08:46:05 pm »
Thanks, Prince

Thanks Jim. I was thinking along those lines.

I didn't know about the updated guidance for the shot. My ID and GP doc are all on board with the no live vaccines.  I'll bring it up at my next appointment.

Yeah, can't hurt to bring it up with them, and show the updates. I think its a common issue as in the past recommendations were indeed different.

Jim
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