Chickenpox and immunosuppressed people

[vivdunstan]

If you haven't had chickenpox as a child and catch it later when on immunosuppression drugs this can be a life-threatening situation. Chickenpox can kill healthy adults who don't have immunity to it. It can certainly kill immunosuppressed ones who haven't had it before.

I started Azathioprine and steroids in Spring 1998. A few weeks after I woke up one morning and was covered in spots. I feared they were chickenpox, though I'd never had it before, called the doctor's surgery right away, and a GP came round within 15 minutes. She said yes, it was chickenpox, and phoned up the infectious diseases unit at the nearby city, and arranged for me to be admitted there immediately.

I was told I only just got there in time. My pulse was already stratospheric (every time a computer checked it an alarm would go off), but luckily I didn't develop anything worse. I was on anti-viral drugs, intravenously, for a week. That was actually very painful because I showed signs of vasculitis in my hands where the drips were going in - the only time I have ever showed signs of vasculitis outside my brain. But the drugs worked. After a week I was discharged, somewhat reluctantly, because my pulse was still quite impressively high. But I was desperate to get home, to my own bed, where I could sleep properly. Sleeping as an in-patient in hospital can be difficult.

More recently I developed shingles, where the chickenpox virus reactivated. That was very painful, horrible nerve pain, running down a nerve from my waist down my left leg to my toes. Quite agonising. And a much nastier rash than I had with the chickenpox. People who are immunosuppressed are at a greater risk of the virus reactivating like this. They can also get shingles repeatedly. Be careful that shingles is infectious. You can't give someone shingles, but if someone hasn't had chickenpox before they can catch chickenpox from someone else who has shingles. Shingles is infectious until the rash starts to crust over and dry up. It should be covered up at all times.

So if you are immunosuppressed and haven't had chickenpox before and someone in your family develops either chickenpox or shingles please keep away from them. And contact your GP for advice. You may be advised just to look out for signs of the disease developing. But if you do develop spots seek urgent medical help.

[John_Mills Volunteer]

Thanks Viv, that is really useful information, especially as a first hand account. I hope you don't mind if we use it on our new website and in the newsletter.

[vivdunstan Volunteer]

Sure, reproduce it wherever. Glad to help.

[Jim-Bornac]

I had chickenpox when I was a kid. Had shingles when I was 40.

[Robb]

Hello Viv

My wife was diagnosed with WG in May this year and had been recovering well with the proscribed drugs-Four weeks ago she developed Shingles (she had shingles back in March this year)-however this time she is now suffering from severe PHN and has just commenced on 300mg Gabapentin- The pain is from her left shoulder down her whole arm and on the palm of her hand-can you give any comment about living with the PHN and coping with the pain-

Thanks

[vivdunstan Volunteer in reply to Robb]

Oh deepest sympathies for your wife. I'm sorry but my neuralgia eased off after a couple of months after the shingles developed, so I haven't had to deal with it as a long-term problem. I know I was very lucky though. My shingles went down my left leg from waist to toes, and the neuralgia was in my left foot and toes. I remember how agonising it was. I do hope your wife's eases with more time, and that the Gabapentin gives her some relief from it. I found that conventional painkillers wouldn't touch it. But again mine eased over time.

[Robb in reply to vivdunstan]

Thanks Viv-what dosage of Gabapentin is required generally to ease the pain? Did you have any other ideas for pain relief-I seem so helpless when the pain hits her-

[vivdunstan Volunteer in reply to Robb]

I didn't have Gabapentin, and don't know what the best advice would be dose wise. I think you need to speak to your doctor for the best advice. My neuralgic pain came and went in waves, and I would tend to yowl through the worst bits as my way of coping! My husband was very patient and understanding.

[Cat3-123]

I am a grandmother whose granddaughter has just received the chicken pox inoculation. I am heartbroken to learn that I should not see her for six weeks as this is a live vaccination. Is this true? Please help

[vivdunstan Volunteer in reply to Cat3-123]

It may depend on your own medical case. You should seek proper medical advice, e.g. from your GP, or even better from your normal consultant. Phone them up to ask urgently.

[Cat3-123 in reply to Cat3-123]

Thank you for your prompt response, I contacted the viral unit in Bristol and they said there was no definitive answer, however, if my granddaughter showed no symptoms within the next two weeks I should be ok. Hope this is useful to anyone else who is immunosupressed and on steroids. Regards.

[vivdunstan Volunteer in reply to Cat3-123]

Thank you for that. And all the best to you and your granddaughter.