Re: ***SHIngles Vaccine UPDATE!!!!!! ---hang on, I'll get to shingles too

[Guest guest]

Hello Everyone!

I haven't been on here in over a year. I did get a message out to

Rose a couple months ago to let her know I'm still alive and kicking,

though not nearly at my prior levels. I'm long- winded and will get

to my shingles ordeal after the next paragraph. It all started when I

had to get off Celebrex in May 2006.

I have been though a horrible year that made me use up my 100

Medicare days plus 75 days out of my own pocket and then another 3 &

1/2 weeks back in the hospital & nursing home. I nearly died twice

from heart & lung problems, plus a horrific case of gout, MRSE that I

caught in the hospital, sleep apnea problems, arthritis, prescription

drug interactions causing major bad side effects including drug-

induced hepatitis and short-term kidney and liver failure. I already

have wonderful heart, lung, & eye doctors who deal with my sarc.

Next week I see a kidney specialist and a neurologist. If any of you

want more details of this, I'll be glad to elaborate to you

individually.

OK, here's my shingles story. While in the nursing home for rehab

following my close call in Dec., my husband nearly died from

complications with his colon cancer. He pulled through and is doing

much better. He became my roommate in the nursing home for rehab.

Little blisters started to appear on my forehead and in my scalp in

mid-Jan., which itched like crazy.It was shingles, my second time to

get them. The first time was just a couple small patches on my

abdomen. This one was pure hell. I had a " patch " that started just

below my right eyebrow that went back about 3 inches into my scako.

It formed a straight line right down the middle of my forehead and

was about 4 inches wide. The doctor said it was stress-induced(from

my husband's near death. The nerve pain was was so bad I was nearly

screaming when it hit and I rang for morphine. I came home Mar. 2.

By then the blisters were gone, but the pain and itching were not.

My GP/nursing home doc sent me to an opthalmologist to try to prevent

the shingles from going into my eye itself. I saw him periodically

and he had me on Vigomox eye drops. At the end of Mar. I started

having some redness and itching in the eye, which seemed likely to be

pink eye. I just waited to see him until the next appointment in mid-

Apr. Bad decision! I now had shingles IN the eye. My cornea was

already damaged and he increased the medicated eye drops and added a

moisturizing drop too. The itching increased and so did my

sratching. That didn't help. Plus, my other eye was showing signs

of focusing problems because it was being overworked. The shingles

continued to get worse and do more damage with possible permant

decrease of vision I have an appointment at noon today. He's going

to put in a couple stitches to keep my lid almost shut. He already

told my I'll just get a couple local(very painful)shots for anasthesia

(sp). I'll post in a couple days to let you folks know how it went.

My GP put me on Lyrica for the nerve pain and it helped a great

deal. That's one of the drugs they believe caused me to pass out and

lie unconscious on the floor for about 5 hours before my husband

found me. They are playing with my dosage level now.

I also inquired about the shingles vaccine and was told what some of

you had already posted---it wasn't good for immunosuppressed patients

like us. I was willing to get it even though I'm under 60. I'm

trying to encourage my parents and anyone else to check into it. Tom

can't get it due to his cancer. I wouldn't wish this shingles hell

on 99 % of the people I know(there are a couple I wouldn't mind

getting it---LOL).

I'll sign off now and try to get a nap in before my surgery today.

Take care of yourselves and try to keep the sarc monster down as well.

I know our sarc buddies help us a great deal through our ordeals.

Love,

Kay

>

> ,

> 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@...

>

>

>

> --------------------------------------------------------------------

----------

> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s

user panel and lay it on us.

>

[Guest guest]

Wow, Kay! This could be an entire book! I would like "the details" of your medical saga when you feel up to it. Email me at mamadogrose@.... Thanks,

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: ***SHIngles Vaccine UPDATE!!!!!! ---hang on, I'll get to shingles tooDate: Mon, 30 Jul 2007 09:07:54 -0000

Hello Everyone! I haven't been on here in over a year. I did get a message out to Rose a couple months ago to let her know I'm still alive and kicking, though not nearly at my prior levels. I'm long- winded and will get to my shingles ordeal after the next paragraph. It all started when I had to get off Celebrex in May 2006.I have been though a horrible year that made me use up my 100 Medicare days plus 75 days out of my own pocket and then another 3 & 1/2 weeks back in the hospital & nursing home. I nearly died twice from heart & lung problems, plus a horrific case of gout, MRSE that I caught in the hospital, sleep apnea problems, arthritis, prescription drug interactions causing major bad side effects including drug-induced hepatitis and short-term kidney and liver failure. I already have wonderful heart, lung, & eye doctors who deal with my sarc. Next week I see a kidney specialist and a neurologist. If any of you want more details of this, I'll be glad to elaborate to you individually. OK, here's my shingles story. While in the nursing home for rehab following my close call in Dec., my husband nearly died from complications with his colon cancer. He pulled through and is doing much better. He became my roommate in the nursing home for rehab. Little blisters started to appear on my forehead and in my scalp in mid-Jan., which itched like crazy.It was shingles, my second time to get them. The first time was just a couple small patches on my abdomen. This one was pure hell. I had a "patch" that started just below my right eyebrow that went back about 3 inches into my scako. It formed a straight line right down the middle of my forehead and was about 4 inches wide. The doctor said it was stress-induced(from my husband's near death. The nerve pain was was so bad I was nearly screaming when it hit and I rang for morphine. I came home Mar. 2. By then the blisters were gone, but the pain and itching were not. My GP/nursing home doc sent me to an opthalmologist to try to prevent the shingles from going into my eye itself. I saw him periodically and he had me on Vigomox eye drops. At the end of Mar. I started having some redness and itching in the eye, which seemed likely to be pink eye. I just waited to see him until the next appointment in mid-Apr. Bad decision! I now had shingles IN the eye. My cornea was already damaged and he increased the medicated eye drops and added a moisturizing drop too. The itching increased and so did my sratching. That didn't help. Plus, my other eye was showing signs of focusing problems because it was being overworked. The shingles continued to get worse and do more damage with possible permant decrease of vision I have an appointment at noon today. He's going to put in a couple stitches to keep my lid almost shut. He already told my I'll just get a couple local(very painful)shots for anasthesia(sp). I'll post in a couple days to let you folks know how it went.My GP put me on Lyrica for the nerve pain and it helped a great deal. That's one of the drugs they believe caused me to pass out and lie unconscious on the floor for about 5 hours before my husband found me. They are playing with my dosage level now.I also inquired about the shingles vaccine and was told what some of you had already posted---it wasn't good for immunosuppressed patients like us. I was willing to get it even though I'm under 60. I'm trying to encourage my parents and anyone else to check into it. Tom can't get it due to his cancer. I wouldn't wish this shingles hell on 99 % of the people I know(there are a couple I wouldn't mind getting it---LOL).I'll sign off now and try to get a nap in before my surgery today. Take care of yourselves and try to keep the sarc monster down as well.I know our sarc buddies help us a great deal through our ordeals.Love, Kay>> ,> 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@...> > > > --------------------------------------------------------------------> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.>

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