Hi everyone,
Just had an email from a friend who is supposed to be coming to our party tomorrow night.
She has shingles in her head, just been diagnosed with blisters still fresh.
She sweetly has given me fair warning wanting to know if she should come.
The last I need is shingles, but the blisters are in her hair, ad I shall avoid her like the plague.
Any thoughts?
Louise
xx
You can catch chicken pox from someone with shingles but not shingles. So if you had chicken pox you are probably OK as long as you are not very immunosuppressed.
Hi, I have shingles, and i have had them for the last 2 months, mine are also in my head, they are so painful, its hard to understand, just how painful they are, I have read about them, on the shingles site. which you can do, I was kept in hospital for a week, but to answer your question. you can not catch them from another person, Its your own virus, in the 2 months i have had them nobody as caught them from me. so after what i have been through, I would say invite her,she will need a bit of comfort from her friends. with my Myelofibrosis, and the shingles,i have been to Hell and back, I am a lot better now, but the shingles are still with me, send her my concerns, and i Bernie62.xx
As a consequence of starting on Rux I developed shingles in my head. I now take aciclovir to try to stop it recurring. I have never endured such pain and still two and a half years on I still have pain. I am over 60 and the literature indicates that the discomfort/pain from shingles can be worse and longer lasting at that age. So you won't catch shingles but you could catch chicken pox which later can re-appear as shingles. As others have said if you are immuno suppressed you may be more likely to catch it. Once the blisters have dried I believe it is no longer infectious but check that.
So if you have never had chicken pox and might be going on Rux I would say keep away. I would also say though that when I started on Rux no-one knew it was an immuno suppressant (forgive me if I've strangled the language) maybe now they ask if you've had chicken pox and start you on aciclovir straight away. There is a vaccine available against shingles. Unfortunately it is live so I can't have it but that might be worth thinking about with your consultant.
But don't take a risk on the basis of being thought a party pooper.
Hi Caroleen I may be wrong then, or read it wrong, any way your right to say dont take the risk. as i have still got shingles, i agree about the pain. I have been waiting to go to the pain clinic for 6 weeks. the pain drives me mad at times. But I see my Heamo again on monday the 15th. I hope they sort it out then. And you still have it after two and a half years.O.M.G. Now i am worried. I have enough to put up with my Myelofibrosis. But my spleen as shrunk from 22 to about 3 or4 cm, All the best Bernie62.
Didn't mean to scare you. I still have pain at the back of my head where the shingles first broke out but that intense pain where spasms of intense pain move along the damaged nerves has stopped. What I found was that stress or swings in emotion could trigger the pain so I worked on staying calm. And certain fabrics touching the damaged area can trigger a response, say I put my head on a cushion the roughness of the fabric will trigger a response. So through trial and error I am exercising control. But it will start to ease naturally over time as the nerves repair. I hope the pain clinic helps you but don't add to your worries by fearing that the pain will stay the same for years. Haven't you done well with the amount your spleen has shrunk? Good for you. Has your appetite increased?
Caroleen
Hi caroleen. yes my appetite is much better, thank you, I am over the moon, Its a big thing for me, as i was facing another,BMB, then a new drug trial, But it does say on warning part of the leafet, you get with Ruxolinitib, that this drug can cause shingles, but you do not expect to get them. Do you have Myelofibrsis.?..
Yes I do unfortunately but since Ruxolitinib I really don't have any problems, long may it keep working.
Yes it does say that now but it didn't at first, it also warns about TB now. Rux doesn't cause these other things its just that it reduces the power of our immune system so it can't keep the zoster virus for instance suppressed in the way it used to. So you get on the one hand and have to pay back on the other but for me what I have gained far outweighs the price of shingles.
Sleep well.
I was not allowed to have the shingles vaccination when it was offered to 70 year olds because it is a live vaccine and not recommended for people with bone marrow problems. I have had chicken pox and am just hoping that I don't develop shingles.
hi
I have had chicken pox twice!
once as a child and then as an adult. So you are not immune if you have had it as child.
It is not fun.
Be careful.
S x
Thanks everyone.
In the end my friend didn t turn up because she was feeling so dreadful.
Now live in fear of ever getting shingles, it sounds absolutely frightful and I do hope you all make a speedy recovery.
I developed peripheral neuropathy which was severe nerve damage and that's bad enough.
Louise
xx
I agree with all the comments above my husband had shingles two years ago aged64 the nerve pain never goes away his scalp is very flaky and sore it's painfullto wash his hair the nerve pain above his right eye is on the go all the time it was after the shingles he developed primary milofibrosis his spleen has shrunk from 21c to 5 on ruxo a fantastic drug for the mylofibrosis but is now making his platelets drop to low so the dose of ruxo has gone from 30. To 10 in the hopes his platelets come back up goi back to the shingles in the head. We have tried all sorts of cream on the scalp have not yet found anything to ease the nerve pain any advice from you all would be appreciated hope you all get free from pain soon
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