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#1 Sandy B

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Posted 19 June 2010 - 10:43 PM

Hi all,

Me and my big mouth! I'm always saying how lucky I feel having the limited form of systemic sclerosis, (my daughter thinks I am quite mad) but if she knew how bad it can be for you guys with the diffuse form she would understand my madness!

Anyway, long story short, I was out in the garden last week, just pottering and in the evening I felt a bit itchy, thought I'd been bitten and discovered I had a rather nasty rash on my tummy and leg. Over the last few days I have been developing pain, skin feels like it is burning and have sharp stabbing pains. I had sort of wondered whether it was shingles, but as I had already had shingles about eight years ago I dismissed it. Well, went to doctors on Friday and it is shingles so he has put me on antiviral meds and amitriptyline to help me sleep and help calm the nerves. Yes they help me sleep, but unfortunately they have done nothing for the pain and they and make me feel like a zombie for half of the day, but hey, onwards and upwards, because it would be worse if I had it on my face!

Take care and seize the day, the sun is shining!

Sandy B

#2 Jeannie McClelland

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Posted 20 June 2010 - 03:59 AM

Hi Sandy,

When I had shingles, I thought, well, that's over, don't need to worry about that again. Hah! Apparently there are some unlucky people who get them every year.

My doctor also gave me an anti-viral, but he also gave me prednisone. The combination calmed them down pretty fast. Prednisone can cause a renal crisis in some scleroderma patients, so it's not something to take willy-nilly, but in my case the shingle had gone from the back of my neck to my face and were nearing the eyes, so the doctor thought it was warranted.

When my hubby ended up with shingles a while later, he got the anti-viral, but not the prednisone. The doctor recommended lots and lots of calamine lotion and only cool showers (the heat aggravates them). We found a spray-on calamine and I had great fun being a graffiti artist on his back and side.

Hope your attack passes soon!
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 Amanda Thorpe

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Posted 20 June 2010 - 05:54 AM

Hello Sandy

My husband has had shingles as has my youngest stepson's lovely girlfriend. I hear it's unpleasant to say the least and hope your attack passes soon.

Take care.
Amanda Thorpe
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#4 annkd


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Posted 21 June 2010 - 04:28 AM

Hi Sandy - I, too had shingles many years ago. Has anyone here had the shingles shot? I see signs at my medical clinic that say "The Shingles Shot is Available". Something to ponder since it sounds like some people get it more than once.

#5 Shelley Ensz

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Posted 21 June 2010 - 04:42 AM

Hi Sandy,

I'm sorry you have shingles! Here are some Get Well Soon flowers for you. :flowers:

My husband had one bout of shingles, on his forehead and going down onto one eyelid. Luckily we had known people who had shingles in the past, and we knew the importance of seeking help immediately. If its not caught right away, the antivirals are of no use.

On the first day, he complained that his skin hurt to the touch on a precise area of his forehead, and he had a bit of a headache. On the second day, I noticed a very slight rash just beginning to start in that same spot, when we were having a quiet cup of coffee and reading our books. I rather alarmed him by saying, that's it, you have shingles, we are going to ER right NOW.

His first ER doctor disagreed with my homemade diagnosis. He said it couldn't be shingles, because it wasn't oozying and crusty. I said, well then we'd like to have a second opinion on it. He huffed out, but did bring another doctor back in awhile later.

That doctor explained to all of us that shingles can occur even without any rash at all, that it is the sudden occurrence of skin hurting for no reason (like no injury) that is the telling sign of shingles. And that by the time the rash is oozing and crusty, then it is beyond the point of being treatable by the antivirals.

Since that time, both my husband and I have had the shingles vaccine. The vaccine is expensive. I had to pay out of pocket for mine. It does not guarantee that you won't get shingles, either. However it does reduce the odds by about 50%. And after seeing what my husband went through, I was very willing to cough up a few hundred dollars for a fighting chance of not getting it.

People can get shingles repeatedly, and it is a special risk for the immune suppressed or elderly. He got his shingles vaccine and then postponed his lung transplant listing by a month, because it is a live vaccine. A month was a long wait, but it was a good feeling to know that we had at least done everything we could to prevent him getting shingles again in the future.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
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