***SHIngles Vaccine UPDATE!!!!!!

[Guest guest]

Went to see my infectious disease doc yesterday. She is go kind and

loving I am really lucky that they found her for me when I had MRSA

for over 2 1/2 years.

While at my visit I asked her opinion of the shingles vaccine for us.

She said she diffinately DOES NOT SUGGEST that we get it because our

immunosuppressed bodys will have terrible side effects to the vaccine

and also because of our immunosuppresion we will not realy make the

antibodies that should be made by our bodies when we take these

vaccines. She said the flu vaccine is fine but forget about the

shingles vaccine its not for us and we would probably have terrible

outcomes if we took it.

I also asked about her current plan for me, and asked if she was

trying to prepare me for taking the keflex 500mg twice a day. She

admitted she was trying to prepare me for that, she explained that I

had it so bad I am lucky to have made it through it. I was on 7 IV

antibiotics and two orals for quite a long time. Her concern is that

it might come back if I stopped the Keflex.

She was running late and still had a waiting room full of people, I

tried to be quick so she might catch up.

Before she left the room she said the nicest thing, I just about

cried. She said that I was a wonderful person and that it was people

like me that she went to medical school for and that she would always

have all the time I needed with no rush.

I have to tell you how much I realize that I have the most wonderful

team of doc's. They really make me feel special and worthwhile wHen I

have some of those bad days. And you all know what they are like.

Hugs and Prayers to all my family, without you I don't think I would

have made it this far.

Judy in PA

[Guest guest]

Hi Judy,Your dr sounds great. What a nice person! Thanks for the info about the shingles vaccine b/c my endocrinologist was wondering about it. I am SO glad that I did not receive it.Blessings,Becky"rjbasso@..." wrote: Went to see my infectious disease doc yesterday. She is go kind and loving I am really lucky that they found her for me when I had MRSA for over 2 1/2 years. While at my visit I asked her opinion of the shingles vaccine for us. She said she diffinately

DOES NOT SUGGEST that we get it because our immunosuppressed bodys will have terrible side effects to the vaccine and also because of our immunosuppresion we will not realy make the antibodies that should be made by our bodies when we take these vaccines. She said the flu vaccine is fine but forget about the shingles vaccine its not for us and we would probably have terrible outcomes if we took it. I also asked about her current plan for me, and asked if she was trying to prepare me for taking the keflex 500mg twice a day. She admitted she was trying to prepare me for that, she explained that I had it so bad I am lucky to have made it through it. I was on 7 IV antibiotics and two orals for quite a long time. Her concern is that it might come back if I stopped the Keflex. She was running late and still had a waiting room full of people, I tried to be quick so she might catch up. Before

she left the room she said the nicest thing, I just about cried. She said that I was a wonderful person and that it was people like me that she went to medical school for and that she would always have all the time I needed with no rush. I have to tell you how much I realize that I have the most wonderful team of doc's. They really make me feel special and worthwhile wHen I have some of those bad days. And you all know what they are like. Hugs and Prayers to all my family, without you I don't think I would have made it this far. Judy in PA

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[Guest guest]

Judy

that is so wonderful, it does make all the difference in how are doctors treat

us, I am so glad you have found some good ones, such a blessing, Marla

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of rjbasso@...

Sent: Friday, July 27, 2007 4:07

AM

To: Neurosarcoidosis

Subject:

***SHIngles Vaccine UPDATE!!!!!!

Went to see my infectious disease doc yesterday. She

is go kind and

loving I am really lucky that they found her for me when I had MRSA

for over 2 1/2 years.

While at my visit I asked her opinion of the shingles vaccine for us.

She said she diffinately DOES NOT SUGGEST that we get it because our

immunosuppressed bodys will have terrible side effects to the vaccine

and also because of our immunosuppresion we will not realy make the

antibodies that should be made by our bodies when we take these

vaccines. She said the flu vaccine is fine but forget about the

shingles vaccine its not for us and we would probably have terrible

outcomes if we took it.

I also asked about her current plan for me, and asked if she was

trying to prepare me for taking the keflex 500mg twice a day. She

admitted she was trying to prepare me for that, she explained that I

had it so bad I am lucky to have made it through it. I was on 7 IV

antibiotics and two orals for quite a long time. Her concern is that

it might come back if I stopped the Keflex.

She was running late and still had a waiting room full of people, I

tried to be quick so she might catch up.

Before she left the room she said the nicest thing, I just about

cried. She said that I was a wonderful person and that it was people

like me that she went to medical school for and that she would always

have all the time I needed with no rush.

I have to tell you how much I realize that I have the most wonderful

team of doc's. They really make me feel special and worthwhile wHen I

have some of those bad days. And you all know what they are like.

Hugs and Prayers to all my family, without you I don't think I would

have made it this far.

Judy in PA

[Guest guest]

I'm going to do some research on this, because Dr. Baughman in Cincy seemed to recommend it, because of the risk of the long-term neuralgia. I am not currently on immune suppressants; it's been a year since I last took Mtx, so I don't think I need to worry about that kind of reaction. For those on immune suppressants, it's probably another one of those fun decisions: take a chance on the reacting to the vaccine or take a chance on getting shingles with severe long-term pain. I'll post what I find about it.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: ***SHIngles Vaccine UPDATE!!!!!!Date: Fri, 27 Jul 2007 03:22:33 -0700 (PDT)

Hi Judy,Your dr sounds great. What a nice person! Thanks for the info about the shingles vaccine b/c my endocrinologist was wondering about it. I am SO glad that I did not receive it.Blessings,Becky"rjbasso (AT) verizon (DOT) net" <rjbasso (AT) verizon (DOT) net> wrote:

Went to see my infectious disease doc yesterday. She is go kind and loving I am really lucky that they found her for me when I had MRSA for over 2 1/2 years.While at my visit I asked her opinion of the shingles vaccine for us. She said she diffinately DOES NOT SUGGEST that we get it because our immunosuppressed bodys will have terrible side effects to the vaccine and also because of our immunosuppresion we will not realy make the antibodies that should be made by our bodies when we take these vaccines. She said the flu vaccine is fine but forget about the shingles vaccine its not for us and we would probably have terrible outcomes if we took it.I also asked about her current plan for me, and asked if she was trying to prepare me for taking the keflex 500mg twice a day. She admitted she was trying to prepare me for that, she explained that I had it so bad I am lucky to have made it through it. I was on 7 IV antibiotics and two orals for quite a long time. Her concern is that it might come back if I stopped the Keflex.She was running late and still had a waiting room full of people, I tried to be quick so she might catch up.Before she left the room she said the nicest thing, I just about cried. She said that I was a wonderful person and that it was people like me that she went to medical school for and that she would always have all the time I needed with no rush.I have to tell you how much I realize that I have the most wonderful team of doc's. They really make me feel special and worthwhile wHen I have some of those bad days. And you all know what they are like.Hugs and Prayers to all my family, without you I don't think I would have made it this far.Judy in PA

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[Guest guest]

Are shingles that common in sarc patients? My mother had shingles last year? the year before? and she was miserable.grannylunatic@...

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[Guest guest]

I've been reading up on the vaccine. There is debate about the use of it in immune-compromised people. Here is a typical comment, from the website medicinenet:

Experts also asked the FDA to require Merck to study how the vaccine works in patients with suppressed immune systems caused by medical treatments or HIV infection. Those patients are the most vulnerable to debilitating shingles but are also at the highest risk for vaccine complications.

"The concern is that you're talking about giving this to a universally large population without adequate safety data, says D. Overturf, MD, a professor of pediatrics and pathology at the University of New Mexico, and chair of the advisory committee.

Silber, MD, Merck's senior director of clinical research, tells WebMD that the company would begin trials with immunosuppressed patients in 2006. The company also plans to continue its study to find out how long the vaccine's protective ability lasts.

For the entire article,go to: http://www.medicinenet.com/script/main/art.asp?articlekey=57035

It will probably come down to individual decisions. Its apparently pretty expensive & some insurance carriers don't cover it. It will probably be covered by Medicare Plan D drug coverage, but the co-pay could still be high. My guess is that insurers won't cover it until age 60, because that is the FDA recommendation. So, it's wait & see for Rosie the Riveter. I just remember my dad getting it in his eye & losing his vision.

Just another wonderful aspect of sarcoidosis--always having to pick the lesser of two evils. Well, I'm going to look at my picture of Travolta & Walken dancing joyously, and smile!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: ***SHIngles Vaccine UPDATE!!!!!!Date: Fri, 27 Jul 2007 19:42:59 -0700 (PDT)

Are shingles that common in sarc patients? My mother had shingles last year? the year before? and she was miserable.grannylunatic (AT) yahoo (DOT) com

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[Guest guest]

Thanks for the info Rosie I think I'll wait too since nobody mentioned it. What about the pneumonia shot?grannylunatic@...

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[Guest guest]

My pulmonologist strongly recommended it when I first developed the lung involvement. That was 5+ years ago. I also get the flu shot yearly & haven't had the flu in at least 25 years. Knock on wood (or particle board--does that still count?!?)

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: ***SHIngles Vaccine UPDATE!!!!!!Date: Fri, 27 Jul 2007 21:04:23 -0700 (PDT)

Thanks for the info Rosie

I think I'll wait too since nobody mentioned it. What about the pneumonia shot?grannylunatic (AT) yahoo (DOT) com

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[Guest guest]

Do they make anything with real wood anymore? It's even hard to find it at Goodwill! I'll have to get my thrifting buddy to keep an eye out for some of the REAL stuff for me. They give me the flu shot at my chemo appt & my mom, dad & brother are getting the pneu shot too. My mother has COPD & she gets pneumonia almost every winter. I was more concerned about getting it to make sure I don't get her germy.grannylunatic@...

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[Guest guest]

Hi Rose,Thanks for the info. Since it hasn't been safely established (for immune deficient pts) and the doctors are either not recommending it or beating around the bush (my endocrinologist) I will wait. I did have shingles about 2 yrs ago and it wasn't pleasant. But, there's too many concerns from what I'm reading for immunocompromised pts to get the shingles vaccine. I was told by my dermatologist that it is crucial to begin an antiviral (I took Valtrex) asap (hopefully within 48 hours of seeing the rash) to avoid a bad case. Mine could have been worse...I did start the Valtrex within 48 hrs. This is useful info and I really appreciate it!Blessings,BeckyRose wrote: I've been reading up on the vaccine. There is debate about the use of it in immune-compromised people. Here is a typical comment, from the website medicinenet: Experts also asked the FDA to require Merck to study how the vaccine works in patients with suppressed immune systems caused by medical treatments or HIV infection. Those patients are the most vulnerable to debilitating shingles but are also at the highest risk for vaccine complications. "The concern is that you're talking about giving this to a universally large population without adequate safety data, says D. Overturf, MD, a professor of pediatrics and pathology at the University

of New Mexico, and chair of the advisory committee. Silber, MD, Merck's senior director of clinical research, tells WebMD that the company would begin trials with immunosuppressed patients in 2006. The company also plans to continue its study to find out how long the vaccine's protective ability lasts. For the entire article,go to: http://www.medicinenet.com/script/main/art.asp?articlekey=57035 It will probably come down to individual decisions. Its apparently pretty expensive & some insurance carriers don't cover it. It will probably be covered by Medicare Plan D drug coverage, but the co-pay could still be high. My guess is that insurers won't cover it until age 60, because that is the FDA recommendation. So,

it's wait & see for Rosie the Riveter. I just remember my dad getting it in his eye & losing his vision. Just another wonderful aspect of sarcoidosis--always having to pick the lesser of two evils. Well, I'm going to look at my picture of Travolta & Walken dancing joyously, and smile! Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: ***SHIngles Vaccine UPDATE!!!!!!Date: Fri, 27 Jul 2007 19:42:59 -0700 (PDT) Are shingles that common in sarc patients? My mother had shingles last year? the year before? and she was miserable.grannylunatic (AT) yahoo (DOT) com Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Local listings, incredible imagery, and driving directions - all in one place!

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[Guest guest]

,

I have had shingles three times and each time it is worse. I am

not sure I could survive another round with it...........the last one was

really terrible.......left me scarred too.

Hugs,

Darlene

NS Co-Owner/Moderator

Re: ***SHIngles Vaccine UPDATE!!!!!!

Are shingles that common in sarc patients? My mother had shingles last year? the year before? and she was miserable.grannylunatic (AT) yahoo (DOT) com

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.

[Guest guest]

What do shingles look like? My mother's were on her bottom and thankfully she didn't show me! LOLgrannylunatic@...

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[Guest guest]

Mine were too. They were in a strip and looked like a rash. Burned and hurt deep inside. There are some pictures online of them but I can't remember where! My pulmo was the first to see them and that was embarrassing (to drop my drawers!). Dermatologist confirmed them. Blessings,Becky wrote: What do shingles look like? My mother's were on her bottom and thankfully she didn't show me!

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