Shingles...OUCH!!!!

[johnnyl]

So, had these suspicious bumps on my back and felt i should get them checked out... Went to the doctor as  my research lead me to believe it was shingles.. I was right,,,and boy how i wish this time I wasnt... This has to be the worst pain I have ever felt. My ID doc sd it looked like shingles and he was going to treat me anyway. Was given acyclovir , and asked me if they hurt..At the time it really did not so no pain meds.. Wish I would have got something.. The itching is driving me crazy more then the pain..  Asked the doc about IRIS, and he sd well it is possible but not to jump to conclusions. I am on so many meds and know that they are working as rashes have gone, and energy levels are the best they have been since i can remember.. Thoughts on this anyone??

[leatherman]

Thoughts on this anyone??

shingles sux!

get better soon!

[johnnyl]

thanks leatherman...      this is the worst ...  my wife says if i keep scratching she is going to put some socks and my hands...  KINKY!!!   Hope all is well dude

[Ann]

Shingles are horrible. Hope the acyclovir kicks in quickly.

Calamine lotion might help with the itching.

[johnnyl]

thanks ann...I hope the meds kick in soon as well... I thought that it helps prevent the spread of these little buggers.. Woke up this morning and pretty much spread... Going to go this morning and get some pain meds... Lastnight was rough..

[leatherman]

sadly, there's no real "cure" for the shingles. Acyclovir tends to moderate the intensity of the outbreak, the length of the outbreak, and the residual pain and itchiness. Notice I italicized "tends to moderate". It doesn't always do much; but it should help. Even though they spread some more; perhaps the med will help shorten how long you have them before they start clearing up.

I've had them 3 or 4 times so I know what you're going through. Unfortunately a lot of people, especially the elderly, get shingles and they're never "fun" but have to be endured.

Hang in there. In a few days this will all be just a bad memory




unless of course you have "postherpetic neuralgia" - the leftover pain from shingles that can go on for months. LOL

[johnnyl]

doc hooked me up with some Norco, and lidocane cream...works like a charm.. still a little itchy... Going to be working from home as they thought it would be best seeming the circumstances. 

Leatherman,,,  how long did this wonderful condition last for you. I see some are starting to turn darkish black color...

[RemyG1971]

I got those nasty things on my side after a night in a Hotel. My Doctor put me on some type of horse pill 5 times a day for a week and they started going away. I did keep it covered with a local rash cream as well and that kept the itching away for the entire time. I also washed the pajamas I wear every other day. I hope they have gone away by the time you read this.

[leatherman]

Leatherman,,,  how long did this wonderful condition last for you. I see some are starting to turn darkish black color...

several days of itching, and then several days of sores, and another several days till the sores scabbed up, and another several days till that cleared up, and then several days for the itchy/painy to be mostly gone. Sorry, but it's probably like a two week sort of situation. Things usually get a lot better once the sores close up/healing over.

Ah, I read that you are having this on your back. I had it on my side/back once; but the worst time was on my hip (cause that was a big outbreak). It's terrible how clothes etc make it hurt. Why just the breeze blowing on my side hurt like heck.    I had it during an Ohio winter once and though I was going to freeze to death as I wasn't wearing pants much leaving my hip exposed. I had it another time in the hot part of August, and couldn't believe how much sweat trickling into an open wound could hurt. Oh and accidentally rolling over onto my back while I was asleep! Egads!!

Just keep hanging on. It's gonna get better!

[johnnyl]

thanks Remy... So irritating..

Leatherman, They really are not as bad as some pictures that I see. they are on my upper right shoulder and neck... not really my back, but thanks again for the kind words... I hope I never have to go through this again. I had gone to the beach a few days before I felt them coming on and got a really bad sunburn.. My ID doc was a little pist as I had forgot to put on sunblock and he sd most likely the sun is what brought them out. I am bummed to at the fact that now I have these, I know my system is working hard, and hope that it does not affect my next lab work. I was really looking forward to better numbers then last time... Shit if I could break 100 I would be stoked...

[LM]

Get some gabapentin, Lyrica, or whatever. It worked wonders for me for the itch and diminished the pain. Really, go for it. I know how tough it is.

[leatherman]

I know my system is working hard, and hope that it does not affect my next lab work. I was really looking forward to better numbers then last time... Shit if I could break 100 I would be stoked...

ah ha! and that helps explain the shingles. Yes, plenty of people get them at all sorts of times; but being under 100 cd4 leaves the door wide open for all sorts of crap. (I hit a low of 5 and then was under 100 for a loooong time and didn't get over 200 for 12 yrs. Just recently in the last year I got over 300 and stayed).

I don't know if you know but cd4s fluctuate daily by up to as much as 100 pts. so don't be surprised if they're not what you wish they were right now. I mean, you do have the shingles dude. LOL Right now you want to be really concerned at seeing your viral load reach and maintain at UD. Once the HIV is under control, your immune system can recover.

Actually the shingles could be a sign of recovery. There's a situation called "Immune reconstitution inflammatory syndrome" (IRIS). What happens is when your immune system was nearly destroyed by the HIV, germs were still getting in your body and nothing was fighting them off. Then when the meds begin to work, and your immune system starts working again, it might start fighting the germs in you and suddenly you're sick - even though you're actually getting better. You've had shingles in you ever since you were a child with chicken pox. Now that your immune system is recovering, it's fighting against the herpes zoster in you, and viola! you have an outbreak of shingles.

one last bit of info. having a very low cd4 count has been shown by studies to often cause two situations - 1) slow recovery of cd4s and 2) not a very high recovery. My numbers are a perfect example of how it took so long to get over 200 and how after 20 yrs of meds I've still only gotten as high as 318. But that's not all bad news for you for 2 reasons - 1) Just because you hit a low of 4 (I think that's what I read in another thread), doesn't mean you won't rebound quickly and to a high count.  and 2) as long as you have good tcells fighting, it doesn't really matter how many you have. My average of 245 has keep me out of the hospital for 15+ yrs and without the flu in all that time.

so the gist of all that is that the shingles might keep your cd4 count down for this next blood work; but as long as your viral is going down or UD, your cd4s will eventually get better - after your body is done with the shingles.

[johnnyl]

your the man...  seeing you have had a lot of experience with this, i appreciate your comments and sharing your expertise..  and congrats on your 300 mark... That is awesome..   

[Ann]

Johnny, don't be surprised - or worried - if the shingles DO affect your CD4 count. Don't worry because the effect will be temporary. For example, when I had shingles back in 2004, my numbers looked like this:

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles (approximately two weeks into the outbreak and on the mend when labs were drawn)
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

I wasn't on hiv meds at the time.

As Mike said, the important thing when you're on meds is that your VL gets to UD. Shingles won't affect the work the meds are doing on your virus and you should be UD soon. Just keep taking those meds!

My doctor told me that in his experience, shingles can recur and when they do, it is often within one year of the initial outbreak. He gave me a course of acyclovir in the appropriate dosage to keep on hand, just in case. The earlier you start the acyclovir, the better. You may want to ask your doctor if he thinks it's wise for you to have some on-hand for the future.

Thankfully I never needed the acyclovir and ended up passing the meds on to someone else who needed them before they were past their expiry date. (I'm on prophylactic acyclovir now for herpes - shingles is in the family of herpes viruses - and I would imagine that will also give me some protection against another bout of shingles aka herpes zoster.)

By the way, has your daughter been vaccinated against the varicella-zoster virus (chickenpox)? From our Shingles Lesson:

Shingles is an infection caused by the same virus that causes chickenpox (the varicella-zoster virus, which is a type of herpes virus). You cannot develop shingles unless you have had a previous infection of chickenpox (usually as a child).

//snip//

You cannot transmit shingles to someone who has had chickenpox in the past or has been vaccinated against the varicella-zoster virus. However, the rash that occurs with shingles can “shed” the varicella-zoster virus. Someone who has not had chickenpox or has not been vaccinated against this virus can develop chickenpox if they come into contact with a shingles rash.

If she hasn't been given this vaccination, you may want to contact her pediatrician and ask about it. Not only will it stop her getting chickenpox, but it will also save her ever having to go through what you're going through, later in her life. I wish they had this vaccination when we were kids!

[leatherman]

I would imagine that will also give me some protection against another bout of shingles aka herpes zoster.

yes

If she hasn't been given this vaccination, you may want to contact her pediatrician and ask about it. Not only will it stop her getting chickenpox, but it will also save her ever having to go through what you're going through, later in her life. I wish they had this vaccination when we were kids!

good catch there Ann!  last thing JL needs right now is a kid running around with the pox too 

[johnnyl]

you two are awesome... and thanks Ann for sharing.. He started me on the 5 a day for 8 days i think .. 800mg....then to 2 a day 400mg for preventive measures.. Feeling a little better today but defiantly something I would not wish on my worst enemy.. Got sent home today and was told to work from home which I can dig... Very capable of working so no bother to me.. And thanks for pointing out the whole transmission.. I was freaking out at first and read about the spread factor.. I immediately checked my little ones Vac card and sure enough, she has been vaccinated.. but still being very careful....no piggy back rides till dad is all better    

[leatherman]

I was freaking out at first and read about the spread factor.. I immediately checked my little ones Vac card and sure enough, she has been vaccinated.. but still being very careful....no piggy back rides till dad is all better

ri-i-i-i-i-i-ght! 
It's all about not accidentally spreading the pox to the kid while she's gripping your oozy, raw shoulder and neck during that piggy back ride and you're trying to hold in the screams of pain.  LOL