I know this subject has been discussed a number of times in the past, although there appears to be no official guidance on the Vasculitis UK website. Clearly the big risk in immunosuppressed people is if you have never had it and you are exposed to it. However if you have already had chickenpox a child the risk of re-activated infection and precautions to take are not entirely clear. I recently had a slight exposure to chicken pox from by grandson, shortly before his spots appeared. I did have chickenpox as a child but I have been staying clear of him since as a precaution. However I am supposed to be looking after him and is younger brother (who could well be in the disease incubation period by now) on Friday. Has anyone had any experience of being re-infected with chickenpox? Also I have heard that you should ask your Dr to be given Acyclovir if you are immunosuppressed and have been exposed to chickenpox as a precaution. However that might be applying to people who have not had the pox previously. Has anyone had any experience?
Chris
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Chris-Bromsgrove
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In 1998 I caught chickenpox from a stranger - don't know if they had shingles or chickenpox - as a young immunosuppressed adult. I never had it as a child. I was rushed to hospital, and lucky to survive.
Many doctors believe you can't catch it again. But we have heard accounts before at Vasculitis UK - for example on the Facebook group - when this has come up, of vasculitis patients - immunosuppressed - who had chickenpox as children, but catching it again. So it can happen.
But you may find that your GP is reluctant to give out anti virals as a precautionary measure.
It may be worth you contacting your consultant by phone tomorrow - ask to leave a message with his/her secretary - for advice. Because they may have a stronger view on things than your GP, and guide your treatment accordingly.
Hi Viv. Thanks for your reply I been reading some of your previous posts on this subject. I did see something on the NHS website (Lupus section) indicating immunosuppressed people can get a second dose. I am going to contact the clinical nurse attached to the Vascultis Clinic tomorrow for further guidance.
You can certainly get a second dose if you catch CP the first time while immunosuppressed because you wouldn't necessarily develop the antibodies. The same applies to the vaccines - if you have poor immune function you don't make antibodies and that is also associated with aging. People in their 50s and 60s do better with the shingles vaccine than people in their 70s and 80s. So where does the NHS decide to start catch-up? With 79 year olds of course...
I got septicaemia 6 months ago in my legs. It came on, spread up my legs in 6 hours, and I only just..just...pulled through. Nice side effect of Prednisolone...
As I understand it (I may have remembered wrongly) the acyclovir doesn't work as a prophylactic - but should be given at the first sign of any symptoms in the hope of reducing severity of symptoms and duration. It is an immunoglobulin (I think, I'd need to do the research to check, I did this all several months ago with the same question on my home forum!) that is used for severely immunocompromised patients to prevent the development of the infection if you KNOW you have been exposed. Of course, all too many times you don't know - as you sat next to a child with a runny nose in the GP surgery or on the bus...
The other thing that isn't clear is whether exposure to CP increases the likelihood of shingles developing (which if course is only a possibility if you have had CP in the past).
The not getting CP again probably depends on the severity of the initial infection - if it was very mild and you were very young then you may not have developed enough lasting immunity to still be immune at our age. So you can have it twice. Or your immune system may not have been able to develop the antibodies.
Hi Chris,
Much depends on what type of immunosuppressant you are on and the level of exposure.
I am sure the " green book " which is the vaccination bible recommends getting your chickenpox antibody levels checked to see if you are immune. I will find you the link.
Yes, I forgot to say that - just pred for example is fine if you are on a low-ish dose (40mg/day is what they say). The other question is "How recently?" As I understand the green book - after 7 days it is too late. But that may not be the case I suppose.
I wonder when those antibody level tests came in? I'm pretty sure they weren't around when I caught it in 1998. Of course that was a long time ago I've also heard secondhand from a vasculitis consultant that antibody levels can fluctuate, and in particular decline. So even if you test as immune at time X, later by time Y when you may be exposed to the virus you could catch it again. Retesting can help.
I think a problem is that not all GPs have followed that, including recently where the guidelines would have been in place. We've had people in the Facebook group whose GPs have recently flat out insisted that you can't catch chickenpox again, so there's no risk.
That's the reason why I always post the link to the Green book so patients can challenge medical staff as to why they aren't following the guidelines.
I have had to accept that all I can do is offer advice, it's up to people whether they take that on board or not. I would be anxiety ridden 24 hrs a day otherwise.
Tell me about it! However, I have sent at least 3 people off to A&E in the last few months where it was assessed there was a reasonable suspicion of GCA! Very satisfying
As for Guidelines - not sure which is worse, the arrogant who say "Guidelines are just guidelines" or the lazy who chuck them in File 13 instead of reading them. I've seen both personally. They should be published as "Best Practice" IMHO.
Putting some guidance on the VUK Website regarding chickenpox and immunosupression is on my to do list. 😀
As you say it's something that comes up fairly frequently.
And while you're at it - can you explain the CP/shingles relationship? You can't "catch" shingles - you develop it after having had CP historically - but can I get people to understand it!!!! Then the old hands who don't get it the right way round post an answer...
It does cause a lot of confusion along with can you catch Chickenpox from Shingles ( exceptionally unlikely! ). Will need to get onto it, so many things to do but little energy these days. 😁
Unlikely maybe - but it can happen from patients who develop a rash that weeps. If the shingles has no rash - no you can't catch CP.
I've just had a couple of weeks where I looked at things and just went - nah! I got out the vacuum yesterday and did the bedroom floor. Did the hall and living room today. Tomorrow will be a "nah" day.
Then we are heading for the UK - do try and find some half-decent weather for us...
Yes, it may be unlikely but I think there's also the problem that the general population doesn't realise that shingles can be infectious. So people don't always take the same precautions to cover up rashes and reduce contact. Of course there's also the problem that people typically assume chickenpox is a trivial childhood disease that doesn't cause anyone any harm beyond itching ...
Absolutely Viv! My brother had it as an adult and was really poorly - and he was healthy! Didn't catch it when my daughter came out with it at his place - it was from a colleague years later!
Same with all the vaccine stuff really - measles and whooping cough can kill relatively healthy children and are horrible anyway. A slightly immunocompromised child who CAN'T have the jabs - it doesn't bear thinking about.
Herd immunity and social duty - I'd best shut up...
You would need to come into contact with the exudate from the vesicles and then it would need to breach your skin, I think it's one of those things that's a theoretical risk rather than actual!
Droplet infections such as CP spread like wildfire in comparison!!
Which is why it infuriates me when people can't cover their mouth when coughing/sneezing/spluttering! I moved from next to someone in the GP waiting room the other day - since she later came out with a private prescription I assume the verdict was "cold". Why waste all that time and effort? She must have been there at least an hour - it's a turn up and wait system.
No half decent weather recently PMRPro, give me a shout if you have time for a coffee. 😀
Viv, Keyes, PMRpro, Many thanks for all the information. It is an interesting discussion point My own research on the web seems to throw up inconsistent advice. Information on VUK (possibly in the form of questions and answers) would be a great help but these things take time, I appreciate. As a child I caught Measles twice before I finally put it to bed, so it does show that you can't automatically assume you have acquired the immunity. The "Green Book" extract is really helpful. Thinking backwards I am pretty sure my exposure was four days before the first appearance of vesicles. The Algorithm indicates that VZIG is only administered if the exposure is within 48 hours of the appearance of the vesicles. So hopefully I was outside the infectious period. Chris
It is the 24 hours before the appearance of the first vesicle that is the REALLY bad time. At 4 days the chances of infection were low - but what about the other rascal?
I did have exposure to him as well at the same time (four days ago). However we were all at a family wedding over the weekend but I kept well clear of the pair of them. My son did take the precaution of notifying all guests in advance about the chickenpox. Thankfully that did not cause anyone a problem.
Yes - but he won't be shedding virus about him for 2 to 3 weeks after his brother developed the spots. The incubation periods is that long and infectiousness is only in the 24-48 hours before the spots appear and until they are all scabbed over. If he didn't catch it from the same place he'll be significantly later.
Just by way of an update. I have been in touch with the clinical nurse at the Vasculitis Clinic I attend. She confirmed Acyclovir would not be administered before there was any evidence I actually had the virus. The main concern is relating to the Cyclophosphamide I received in 2012. That can sometimes weaken your immunity. I have had an immunity test today.
I think the immunity weakening with all these immunosuppressants is predominantly during the period of treatment and for a short time thereafter - that's 4 years ago and if you had any serious problems with your immunity you would have had problems long before now.
I've just had a rake round the internet and Johns Hopkins says the same - the immunosuppressive effect of cyclophosphamide is transient. Once you stop giving it, providing it wasn't left too late, the cells counts recover to normal values. It is something you see with many cancer medications - treatment often has to be delayed because of poor blood counts but very often it recovers again and the treatment can be continued. Otherwise a different drug will be used.
It's a complicated subject where opinions seem to differ. It'd not surprising there is no definitive guidance available. It would seem to make sense to me that your immune system would make some sort of recovery afterwards. Interestingly the clinical nurse said to me that they are currently getting a spike in CP cases in vulnerable people and that usually results in a spike of shingles cases.
Very interesting post this one. Just wanted to share my experience.
I had CP as a 10 year old, quite severe but I guess unremarkable. In the earlier stages of being unwell (well before GPA diagnosis) I was put on Pred 30mg to try and control multiple symptoms (albeit at the time they did not know to what they related). A few weeks later my Daughter had chickenpox spots appear. Knowing the risk my wife phoned me at work to let me know and we'll within the hour spots had appeared on me. Quick drive home followed by immediate start on anti viral meds, which did the trick and stopped CP in its tracks. Now the interesting bit for me was the fact that no one really wanted to stop the anti viral meds that quickly - happy to reduce to a less strong one but not stop, so ended up on them for months!
Anyway, I guess my key point was that it did not take long (or a very high dose) for Pred to remove my immune system protection for CP. It's definitely one to be very vary of.
Hi PCAD, Your case is interesting in that despite having a severe dose of CP as a child it seems your immunity wasn't strong enough to stand up to a moderately high dose of pred. I would not have thought you would be classed as severely immuncompromised with that dose. Clearly you do need to be on your guard. I am pleased to to say my immunity test came out positive, so it looks like I will be looking after my infected grandchildren on Friday after all. Chris
I haven't read all the replies here, so I don't know if we all agree, or not. I can only tell you that I was told, in NO UNCIRTAIN TERMS to avoid Chicken Pox , and that, if I did come into contact with it to see my GP straight away. My GP will then immediately prescribe a suitable 'Anti-Viral' which SHOULD stop this disease from causing me harm. I know that this does sound rather Dramatic but it was impressed, to me, in these terms.
The best course of action, is clearly, to not expose yourself-even if this means dis-appointing a relative-in this case your Grand-son. Take him out for a lovely day, with as much 'junk' food, as he can eat-in a month's time.
You would have done well to read through all of the replies, it became quite a saga. It does seem that advice re chicken pox among medical professionals is not entirely consistent. My sister-in-law who is a GP advocated taking Aciclovir anti viral drug if you are exposed to CP. The Vasculitis clinic at the QE Hospital in Birmingham, where I am treated will only prescribe it when there are clear symptoms of the virus. Instead they carried out a CP immunity test which confirmed I still retain the immunity. Rightly or wrongly I followed their advice which cleared me to have contact with my infected grandchildren. I also believe the official guidance is you cannot develop shingles through re-exposure to the CP virus, but I know there are claims that people have developed shingles this way. It would be good to have some guidance on the VUK website on this. Chris
Yes I know that there ARE 'different' opinions, on this matter, BUT I am sticking to the advice that I was given-by my Doctors/Consultants! I'm glad that you clearly, did not, suffer any ill effects, from your Grandson-however I am not convinced personally. My advice does therefore remain unaffected, IE don't have contact...Sorry.
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I've also heard secondhand from a vasculitis consultant that antibody levels can fluctuate, and in particular decline. So even if you test as immune at time X, later by time Y when you may be exposed to the virus you could catch it again. Retesting can help.
Recently diagnosed with ANCA Vasculitis.
Shortage of Breath with low Immune System
Methotrexate and antibiotics
