Shingles Anyone?

Helen99
Helen99

April 11th, 2018, 4:19 pm #1

Hi All -
Have any of you had the ‘pleasure’ of having shingles...especially since it’s not recommended that we receive the shingles vaccine? I’d appreciate hearing your experiences. Here’s my saga:

A dark red spot appeared on my left arm. Within the next few days, the spots multiplied and red blotches appeared but no itching, no pain. But, I began to have frequent severe stabbing pain on the left side of the back of my head and in my ear - like with an ice pick. Went to the ER where they gave me a CT Scan, blood tests, etc. - all normal. The pattern of my rash didn’t quite follow the nerve paths of my arm and didn’t itch or hurt so they couldn’t 100% conclude I have shingles. I also did not have any lesions on my scalp. However, to be conservative, the docs started me on the antiviral (acyclovir) because a couple of the spots were starting to form small bumps on them. They also gave me an IV of migraine meds for the pain in my head which thankfully helped but prescribed prednisone thinking that pain may have been due to muscle tightness in my neck (occiptial neuralgia?). I saw 3 docs and one thought the two issues might really be just one...shingles.

ER bloodwork 4/8: WBC 3.4 with the ANC at 68% & ALC 19% - my other blood counts are within the normal range. I’m hoping I started the antiviral in time. I now have the itching, burning, blistering on my arm but the redness is subsiding. No head pain since the ER but I’m not thrilled about taking prednisone - in addition to being wired and not able to sleep, I know it reduces the WBC. Also, I keep reading about those who are immunosurpressed being more at risk for getting shingles. I’m over two years out from treatment. Before starting treatment, I recall the nurse saying I could be immunosurpressed for up to 4 years. Any thoughts on that?

“Life is like a box of chocolates - you never know what you’re going to get.” Speaking of chocolates....I could eat an entire box right now! Could it be the prednisone?????

Helen


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Joined: January 16th, 2018, 8:38 pm

Shingles

April 11th, 2018, 5:23 pm #2

I had it about a year after being treated. Went to ER and there was a long line. They put me in front when they saw me. Had it on the right side of my head and neck. Prednisone sucked. I can't remember if I was in the hospital for a few days? The pain continued for many years. Once in a while I can still feel it. They need to warn all HCL patients that there is a good shot they will get Shingles. Shingles can kill you. I know somebody who had a friend who died from it when he was young. Not a joke. Hope you don't suffer too much.
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Rob
Rob

Hellen

April 11th, 2018, 6:12 pm #3

Hi All -
Have any of you had the ‘pleasure’ of having shingles...especially since it’s not recommended that we receive the shingles vaccine? I’d appreciate hearing your experiences. Here’s my saga:

A dark red spot appeared on my left arm. Within the next few days, the spots multiplied and red blotches appeared but no itching, no pain. But, I began to have frequent severe stabbing pain on the left side of the back of my head and in my ear - like with an ice pick. Went to the ER where they gave me a CT Scan, blood tests, etc. - all normal. The pattern of my rash didn’t quite follow the nerve paths of my arm and didn’t itch or hurt so they couldn’t 100% conclude I have shingles. I also did not have any lesions on my scalp. However, to be conservative, the docs started me on the antiviral (acyclovir) because a couple of the spots were starting to form small bumps on them. They also gave me an IV of migraine meds for the pain in my head which thankfully helped but prescribed prednisone thinking that pain may have been due to muscle tightness in my neck (occiptial neuralgia?). I saw 3 docs and one thought the two issues might really be just one...shingles.

ER bloodwork 4/8: WBC 3.4 with the ANC at 68% & ALC 19% - my other blood counts are within the normal range. I’m hoping I started the antiviral in time. I now have the itching, burning, blistering on my arm but the redness is subsiding. No head pain since the ER but I’m not thrilled about taking prednisone - in addition to being wired and not able to sleep, I know it reduces the WBC. Also, I keep reading about those who are immunosurpressed being more at risk for getting shingles. I’m over two years out from treatment. Before starting treatment, I recall the nurse saying I could be immunosurpressed for up to 4 years. Any thoughts on that?

“Life is like a box of chocolates - you never know what you’re going to get.” Speaking of chocolates....I could eat an entire box right now! Could it be the prednisone?????

Helen

Here's a link to my shingles adventure:
http://www.network54.com/Forum/263810/m ... n+shingles

it's inside this thread:
http://www.network54.com/Forum/263810/t ... 433/Digest

And if you go to search and type shingles you'll get about 22 pages of information/experience on the stuff.

My second time was a breeze due to medication--I went to a dermatologist, not the family doc. I crashed his office and he said that was OK because it needs fast treatment and a stong dose of medication. But I really suffered minimally. If' I'd gone soone I would probab;y hardly have noticed any symptoms at all.
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Joined: August 5th, 2013, 10:49 pm

New Shingles Vaccine

April 11th, 2018, 8:39 pm #4

Hi All -
Have any of you had the ‘pleasure’ of having shingles...especially since it’s not recommended that we receive the shingles vaccine? I’d appreciate hearing your experiences. Here’s my saga:

A dark red spot appeared on my left arm. Within the next few days, the spots multiplied and red blotches appeared but no itching, no pain. But, I began to have frequent severe stabbing pain on the left side of the back of my head and in my ear - like with an ice pick. Went to the ER where they gave me a CT Scan, blood tests, etc. - all normal. The pattern of my rash didn’t quite follow the nerve paths of my arm and didn’t itch or hurt so they couldn’t 100% conclude I have shingles. I also did not have any lesions on my scalp. However, to be conservative, the docs started me on the antiviral (acyclovir) because a couple of the spots were starting to form small bumps on them. They also gave me an IV of migraine meds for the pain in my head which thankfully helped but prescribed prednisone thinking that pain may have been due to muscle tightness in my neck (occiptial neuralgia?). I saw 3 docs and one thought the two issues might really be just one...shingles.

ER bloodwork 4/8: WBC 3.4 with the ANC at 68% & ALC 19% - my other blood counts are within the normal range. I’m hoping I started the antiviral in time. I now have the itching, burning, blistering on my arm but the redness is subsiding. No head pain since the ER but I’m not thrilled about taking prednisone - in addition to being wired and not able to sleep, I know it reduces the WBC. Also, I keep reading about those who are immunosurpressed being more at risk for getting shingles. I’m over two years out from treatment. Before starting treatment, I recall the nurse saying I could be immunosurpressed for up to 4 years. Any thoughts on that?

“Life is like a box of chocolates - you never know what you’re going to get.” Speaking of chocolates....I could eat an entire box right now! Could it be the prednisone?????

Helen

New Shingles Vaccine
Last edited by OmahaHCL on April 11th, 2018, 8:46 pm, edited 1 time in total.
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Joined: August 5th, 2013, 10:49 pm

Can't get new Shingles vaccine either

April 11th, 2018, 8:47 pm #5

The FDA approved a new shingles vaccine earlier this year. But, they don't recommend this one for leukemia patients either.
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Helen99
Helen99

Interesting, but....

April 11th, 2018, 10:52 pm #6

....I found this article on the CLL Society website:

https://cllsociety.org/2017/11/shingles-vaccine-cll/

Take a look at the end of the article - I think there’s still hope that we’ll be able to get the Shingrix vaccine. I’m going to pursue a follow-up discussion with my PCP and Hematologist at a later date - I’ve read that after having shingles, one should wait at least 6 months before getting the vaccine....and maybe by then, there will be more decisive guidance w/r/t the Shingrix vaccine for us “chronic” leukemia patients.

Has anyone else looked into this? Better yet, has anyone gotten the Shingrix vaccine???

Thanks!
Helen
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Rob
Rob

sometimes

April 11th, 2018, 11:12 pm #7

after you get shingles it doesn't come back. It shouldn't come back for along time (years) so the vaccine doesn't seem necessary after a bout. shingrex is new. Who knows????
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Joined: August 5th, 2013, 10:49 pm

Some more info

April 12th, 2018, 1:58 am #8

Here is what I read. It also says you can get Shingles more than once.

The question about whether to get the vaccine would be a great question for the HCL foundation.

https://www.webmd.com/skin-problems-and ... ed-to-know



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Rob
Rob

I got it twice

April 12th, 2018, 2:31 am #9

abut 1-2 years after treatment both times 2002 or 23 and 2017.
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Rob
Rob

PS:

April 12th, 2018, 2:44 am #10

I got an in-law, 87-ish with diabetes who gets shingles all the time. He has zero cancer.
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Joined: March 27th, 2014, 7:18 pm

Yes

April 13th, 2018, 2:06 am #11

Hi All -
Have any of you had the ‘pleasure’ of having shingles...especially since it’s not recommended that we receive the shingles vaccine? I’d appreciate hearing your experiences. Here’s my saga:

A dark red spot appeared on my left arm. Within the next few days, the spots multiplied and red blotches appeared but no itching, no pain. But, I began to have frequent severe stabbing pain on the left side of the back of my head and in my ear - like with an ice pick. Went to the ER where they gave me a CT Scan, blood tests, etc. - all normal. The pattern of my rash didn’t quite follow the nerve paths of my arm and didn’t itch or hurt so they couldn’t 100% conclude I have shingles. I also did not have any lesions on my scalp. However, to be conservative, the docs started me on the antiviral (acyclovir) because a couple of the spots were starting to form small bumps on them. They also gave me an IV of migraine meds for the pain in my head which thankfully helped but prescribed prednisone thinking that pain may have been due to muscle tightness in my neck (occiptial neuralgia?). I saw 3 docs and one thought the two issues might really be just one...shingles.

ER bloodwork 4/8: WBC 3.4 with the ANC at 68% & ALC 19% - my other blood counts are within the normal range. I’m hoping I started the antiviral in time. I now have the itching, burning, blistering on my arm but the redness is subsiding. No head pain since the ER but I’m not thrilled about taking prednisone - in addition to being wired and not able to sleep, I know it reduces the WBC. Also, I keep reading about those who are immunosurpressed being more at risk for getting shingles. I’m over two years out from treatment. Before starting treatment, I recall the nurse saying I could be immunosurpressed for up to 4 years. Any thoughts on that?

“Life is like a box of chocolates - you never know what you’re going to get.” Speaking of chocolates....I could eat an entire box right now! Could it be the prednisone?????

Helen

I have had shingles, but we caught the first one really, really early. The nurses were all saying, "Huh, that's an odd spot on your back" when an old oncologist walked by, glanced at it, and said, "Oh, that's shingles". I've been on famciclovir ever since. I've tried to go off it, but after a few days, I get a tingling along a nerve that says shingles is on its way, and I have to start again. Once or twice we've had to double the dose for a week or two, for the same reason.

I have no side effects from famciclovir. Acyclovir seems to require more frequent doses (pills several times a day) and seems to have more side effects (like fatigue). If nerve pain is a problem, then ask about a transdermal lidocaine patch. It was developed by a physician whose wife had horrible nerve damage from shingles. (It also works pretty well on sciatica -- just stops that lightning bolt down the leg.)

Shingles is more common now than it used to be, and I've read that it's partly because kids don't get chicken pox any more. It seems that taking care of kids with chicken pox functioned as a sort of natural (and dangerous) booster. I'm hopeful that this new vaccine will prove effective for HCLers. I don't think it will be dangerous to us, but there's a chance that it will be useless.
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Helen99
Helen99

Thanks, Waid...

April 13th, 2018, 2:41 pm #12

....for sharing your experience w/me. As always, you’re providing very helpful info and insight! You might have seen that I was able to get the HCL Foundation’s stance on the new Shingrix shingles vaccine (separate post). I plan on following up w/my docs. I agree - even if we can opt to receive it, who knows if it will really help. But, the frequent stabbing pain that I had in my head w/this bout makes me want to give it a try if I can. Thanks, again.

Helen
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Joined: March 30th, 2003, 5:17 pm

WAID

April 13th, 2018, 9:55 pm #13

I have had shingles, but we caught the first one really, really early. The nurses were all saying, "Huh, that's an odd spot on your back" when an old oncologist walked by, glanced at it, and said, "Oh, that's shingles". I've been on famciclovir ever since. I've tried to go off it, but after a few days, I get a tingling along a nerve that says shingles is on its way, and I have to start again. Once or twice we've had to double the dose for a week or two, for the same reason.

I have no side effects from famciclovir. Acyclovir seems to require more frequent doses (pills several times a day) and seems to have more side effects (like fatigue). If nerve pain is a problem, then ask about a transdermal lidocaine patch. It was developed by a physician whose wife had horrible nerve damage from shingles. (It also works pretty well on sciatica -- just stops that lightning bolt down the leg.)

Shingles is more common now than it used to be, and I've read that it's partly because kids don't get chicken pox any more. It seems that taking care of kids with chicken pox functioned as a sort of natural (and dangerous) booster. I'm hopeful that this new vaccine will prove effective for HCLers. I don't think it will be dangerous to us, but there's a chance that it will be useless.
Re: "I get a tingling along a nerve that says shingles is on its way, and I have to start again. Once or twice we've had to double the dose for a week or two, for the same reason."

Are you constantly coming down with shingles?


Re: "If nerve pain is a problem, then ask about a transdermal lidocaine patch. It was developed by a physician whose wife had horrible nerve damage from shingles. (It also works pretty well on sciatica -- just stops that lightning bolt down the leg.)"

does this work for all types of pain? I have a friend with Kniest Dysplasia and is in constant pain. Might this help him?

I found other pain relievers too but the one that seems most appropriate is some type of patch-treatment.
https://www.activebeat.co/your-health/7 ... ving-pain/
Last edited by rbmac5 on April 13th, 2018, 9:56 pm, edited 1 time in total.
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Joined: March 27th, 2014, 7:18 pm

April 17th, 2018, 4:43 am #14

Transdermal lidocaine **only** works on nerve pain. You put the patch at the "base" of the nerve and it takes out pain from that nerve. It does nothing for strained muscles, bone pain, arthritis, acid reflux pain, etc. If "everything" hurts, it's probably not going to do any good. If it's just one unhappy "pinched nerve", then IMO it's reasonable to try it.
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Joined: March 30th, 2003, 5:17 pm

April 17th, 2018, 2:09 pm #15

Thank you. I've suggested to my friend that he think about patch treatments. However, I'd be surprised if he or his docs haven't already thought about this.
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Joined: March 27th, 2014, 7:18 pm

April 18th, 2018, 3:12 am #16

In my experience, the only patch treatment they usually think about is opioids (a fentanyl patch).
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Joined: March 30th, 2003, 5:17 pm

April 18th, 2018, 1:07 pm #17

How about marijuana? I'm not a fan myself, but then again I'm not suffering and out of options.
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Joined: March 27th, 2014, 7:18 pm

April 18th, 2018, 7:07 pm #18

I really don't know.
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