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Shingles in the auto immune suppressed Options
Paul Barrett
#1 Posted : Tuesday, May 28, 2013 11:24:58 PM Quote
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Having seen what Shingles did to my wife's mum I am concerned about this issue, esp as I am about to embark on Humira.

A rheumy consultant gave me this advice which I thought I'd share:

"Firstly, I'd suggest being tested for VZV antibodies. If you test positive, you have already been exposed, can be considered immune and won't need vaccination at all.

If you test negative, you could be vaccinated. I'd be very cautious about taking this vaccine whilst on immunosuppressive drugs (including prednisolone). So I'd suggest coming off everything (and would need to allow a reasonable interval after MTX/Adalimumab - say four weeks - before considering vaccination) including steroids. Then would leave it at least 10 days to 2 weeks after vaccination to restart, and not then if you had developed a rash (can happen after vaccination)

You'd need to set the risks of such a strategy (disease flare) off against the benefits (peace of mind over VZV exposure). Might be best not to bother."
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
suzanne_p
#2 Posted : Wednesday, May 29, 2013 3:00:42 PM Quote
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never thought of this to be honest Paul,

maybe one to bring up when I next see my Consultant in July,

the only precautions I have taken since having RA are the flu jab and also the pneumonia one as well.

personally I don't think I would bother but you have made me think, so will mention it.

Suzanne
sylviax
#3 Posted : Wednesday, May 29, 2013 3:58:52 PM Quote
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Thanks for sharing Paul - my hubby had shingles a while back, and it was not pleasant!! I had chicken pox as a child so I think that makes me immune - fingers crossed!

Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
anne_t
#4 Posted : Wednesday, May 29, 2013 7:52:03 PM Quote
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Sorry, Sylvia,
It is BECAUSE you had chickenpox as a child that you get shingles. Thats
the population as a whole but as we are immuni compromised you are
MORE likely to get it. Apparently the virus stays in the body hiding ,it
comes again along a nerve when stress or something else gets us when
we are really low. If one does get it, it is important to get to the Drs.
asap.
Sorry again ......Anne
sylviax
#5 Posted : Friday, May 31, 2013 10:12:16 AM Quote
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Thanks for heads up Anne - I didn't know that. Luckily I didn't get shingles when hubby did - which is a relief!

Incidentally, talking about viruses, does anybody else suffer with cold sores? Years ago I used to get them regularly, but since having RA I haven't had one for a couple of years - until NOW!! Ughh - I have a monster on my lip and am mortified. Can't understand why it's suddenly appeared now as I'm generally feeling very well. The only thing that's changed is that I've just started sulphusalazine, which seems to be working as my DAS is the lowest I can remember it being! I wonder if that's got something to do with it

Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
Paul Barrett
#6 Posted : Friday, May 31, 2013 12:35:46 PM Quote
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sylviax wrote:
Thanks for sharing Paul - my hubby had shingles a while back, and it was not pleasant!! I had chicken pox as a child so I think that makes me immune - fingers crossed!

Sylvia xx


Ask your GP for the antibody test - that's the only way to be sure
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
anne_t
#7 Posted : Friday, May 31, 2013 4:48:54 PM Quote
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Hi Sylvia,
As far as I remember it is part of the vari whatsit virus and
some people get that instead of shingles. Go to the Doctor for advice
Take care Anne
zena_mary
#8 Posted : Friday, May 31, 2013 10:30:03 PM Quote
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Sylvia, I had a spell of getting cold sore after cold sore a couple of years ago.
Got in touch with my nurse because I was convinced it was linked with ra. She said no.
Eventually realised it was being caused by the sun, because of being on mtx, I had never had a cold sore in my life before.
Started to use lip sun block and no more problems, worth a try if you have had any sun that is!!!
Zena xx
Naomi1
#9 Posted : Sunday, June 02, 2013 12:50:31 AM Quote
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Sylvia......maybe you didn't get them for ages because of an overactive immune system and maybe the fact that you have got one now means that your immune system is more normal. Just a thought and also a positive way of looking at it. Celebrate that cold sore!
sylviax
#10 Posted : Sunday, June 02, 2013 7:42:42 AM Quote
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Cheers Naomi - I'm celebrating - whoo hoo! Haha - that thought made me laugh - but I think you have a point - it's probably a fine balance between having a bit of inflammation/pain and suppressing the immune system too much so getting other bugs.

Thanks Zena - I've been out in the sun/wind quite a bit recently and my face is a bit pinker than usual, so maybe that has contributed to it - I'll try some sun block

Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
Paul Barrett
#11 Posted : Thursday, June 06, 2013 10:53:37 AM Quote
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Good news!!!!!

I had the blood test, and I don't need to be vaccinated for shingles because it turns out I have natural resistance.

Yay!!! Finally some good news. BigGrin
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
anne_t
#12 Posted : Thursday, June 06, 2013 6:42:47 PM Quote
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Hi,Paul,
You'll never know what delights you've missed. I still get
nerve pain 5 years on. Anne
crazychick
#13 Posted : Saturday, June 08, 2013 1:12:43 PM Quote
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Hi Everyone

I have at this very moment got shingles. I was in severe pain on Thursday in my hip and even after morphine all day it was just getting worse. My husband phoned the out of hours doctor at night to be told he couldn't give me anything more than morphine and to see my GP in the morning by which time i had the rash. I was feeling unwell a few days before and still have a high temperature and headache. The doctor gave me anti viral meds. The pain is terrible and i would not wish this on anyone.

I'm on methotrexate and entercept and my GP said i could continue with those while i have shingles. I am concerned as i thought if you had an infection/high temperature you had to stop until well again? Does anyone know?

Love Shirley Sad
Paul Barrett
#14 Posted : Sunday, June 09, 2013 6:17:24 PM Quote
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I have not started my anti TNF yet so I don't know, but I would have thought that proper anti viral / antibiotic cover is the key thing. After all the 'damage' has already been done by the infection starting in te first place. You need to consult your rheumy nurse I think. I'd be interested to hear the outcome.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Sheila-R
#15 Posted : Sunday, June 09, 2013 9:24:01 PM Quote
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Not sure about the enbrel but I had an op recently and apparently thinking has changed and they don't stop Methotrexate now. This was confirmed by a patient opposite me who also had RA and was on enbrel, she'd had major surgery and had to stop the enbrel but not the methotrexate. So maybe that answeres one but ont the other.
Hope you begin to feel better soon.
Best wishes
Sheila
crazychick
#16 Posted : Monday, June 10, 2013 9:16:31 PM Quote
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Hi everyone

Just to update you all i have found out today that i have to stop methotrexate and enbrel for 2 weeks while i have shingles. I phoned the hospital and the rhuemy nurse got back to me. Apparently you have to have a clear week after taking the anti virals.

It was the same when i had pneumonia and had antibiotics. I was off the meds then for 6 weeks! That's another story i won't go in to now!

The pain has eased a lot which i'm so relieved about.

Love Shirley
Paul Barrett
#17 Posted : Monday, June 10, 2013 9:53:44 PM Quote
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Glad to hear the pain has eased. Fingers crossed that stopping the meds doesn't cause a flare
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
crazychick
#18 Posted : Tuesday, June 11, 2013 12:09:39 PM Quote
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Thanks Paul, I spoke too soon.... the pain is bad this morning and kept me awake last night. I dropped the pain meds yesterday and it was probably too soon so back on full dose today! Fed up being sleepy.

Last two times i have had to stop methotrexate and enbrel i have ended up in dreadful pain and hardly able to move and had to go in the wheelchair so i'm hoping i won't have any complications and be off them too long.

Take care.

Love Shirley
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