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MDS Myelodysplastic syndromes

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  #1  
Old Sat Nov 19, 2016, 11:56 PM
Bossywife Bossywife is offline
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Shingles?

Has anyone had experience with shingles with MDS? We have a huge outbreak of shingles/chicken pox in my city. Should my husband stay home? He is currently doing a return to work from a broken leg.
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Old Sun Nov 20, 2016, 11:53 AM
bailie bailie is offline
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I have wondered about the same thing. I have a friend that has shingles right now. I had a shingles shot before transplant but all of that protection goes away with the transplant.

How is your husband doing with MDS and what are the doctors saying? Did he ever get other opinions on a course of action?
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Old Sun Nov 20, 2016, 03:25 PM
Marlene Marlene is offline
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Typically, if he had chicken pox, he should still have immunity to chicken pox. If he did not have chicken pox but had the vaccination for it, there's a possibility the protection may not be as good depending on how long ago the vaccination was.

Regarding shingles, which John got after treatment, we were told that they are not transmitted like chicken pox. Instead, you have to have physical contact with the rash. The biggest risk is to pregnant women.

So I think there's a low risk of catching shingles. As you know, shingles is a reactivation of the chicken pox virus that is dormant in your body. I would be more concerned with the chicken pox virus depending on his history and current status of his immune system.

I would take the same precautions you would for avoiding colds and flu. err on the side of caution.
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Old Sun Nov 20, 2016, 07:50 PM
Cheryl C Cheryl C is offline
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I had shingles in March/April this year. My understanding is that once you have had chicken pox you have the varicella (shingles) virus forever. It remains dormant unless the body gives it the right environment to flourish. I have low immunity to infections and viruses due to MDS, and was under a lot of stress caring for three children under 10. (I had had chicken pox as a child).

For me, shingles was terribly painful even though I only had one blistery lesion. It was focused on the sciatic nerve in my left buttock and down into my groin and sitting was very uncomfortable. It also affected my bladder (urinary retention) and I had to be hospitalised in order to stabilise. After about 6-8 weeks it went away very quickly after I took big doses of Olive Leaf extract (recommended by my younger brother).

My understanding from research is that people with MDS or at least with low immunity shouldn't have the injection as it is a live vaccine.
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Old Mon Nov 21, 2016, 01:01 AM
Hopeful Hopeful is offline
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I had chicken pox as a kid and got shingles a couple of years ago while immune suppressed on cyclosporine.

Within 48 hours of recognizing the rash on my waist, I went to the doctor and was immediately put on the antiviral medicine. Because of that, I had a relatively mild case, although I had some nerve pain that lingered for 3 months.

Be sure to know the symptoms, and get the antiviral medication if you see the rash. It works!
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  #6  
Old Mon Nov 21, 2016, 08:24 PM
Ugo Ugo is offline
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Shingles

I was initially diagnosed with MDS in 2002. My numbers have remained within a narrow band but also always below normal. Two years ago I developed Shingles. They wereprimariy on the left side of my head including my lefy ear. They were very painful/

When the shingles eventually cleared p I was told the continuing
pain was Post herpetic neuralgia. This has continuedalthough it
does seem to be improving. This combination of shingkes and he resuting neuralgia has now been going on for two years.

Coincidentally one MD tested my immunity and found that to be low.

I did not have the shingles shot.

Ugo
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Old Tue Nov 22, 2016, 02:06 PM
GoodDay5150 GoodDay5150 is offline
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I had them abt a yr ago. Super painful, and uncomfortable bcse they were on my leg. Very hard to sit or lay down. My transplant dr sd that I was vaccinated for them, but I got them anyway. I know of a healthy woman my age that had them in her 40's, so it's true that anyone can get them regardless of having bone marrow/ immune system compromised issues. I took an antiviral for them, and they cleared up pretty quickly.

Mario
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  #8  
Old Mon Nov 28, 2016, 09:16 AM
Bossywife Bossywife is offline
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Quote:
Originally Posted by bailie View Post
How is your husband doing with MDS and what are the doctors saying? Did he ever get other opinions on a course of action?
Husband is still recovering from his broken leg. I noticed that his skin colour was very improved, and then he started gaining weight and he doesn't sweat as much at night.

He missed his blood work Nov 1 because we've just had so much going on, but he gets his December blood work today and I'm curious to see how the #s look.

I'm thinking his numbers are going to be very good. We've made a change that I'm not going to talk about here until I have more data But I honestly think that his weight loss and frailty was because he was playing so much hockey (sometimes 4 games a week) and not eating enough protein. So if he goes back to Hockey, we'll be working on diet.

We see his specialist in Vancouver on March 1, so I have a ton of new questions to ask him!
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