Hi All. So...as per my just now previous post...I started treatment with immunosuppressants this morning (Azothioprine) and understand that exposure to chicken pox must be avoided.
I have had IgG tested and this detected varicella antibodies (shows either previous vaccination or infection).
What I'm not clear about is whether having these antibodies provides complete protection against infection with chicken pox when also on immunosuppressants?
So here's the thing:
My eldest grandson has chicken pox - currently at the contagious stage so I'll avoid contact with him until his spots have crusted over. We were both in contact with the person who delivered 'the pox' - my potential incubation period ends this Sunday. The rheumatologist just advised me to stop taking the Azothioprine if I came down with it.
My youngest grandson will now be in the 21 day incubation period so, my question is, do I have to avoid contact for the whole 21 day incubation period, only if he has a confirmed case of chicken pox, or can I maintain contact, as usual 🤔🙄.
Don't want to be over or under cautious - just not sure how much protection detected IgG gives (or doesn't give) when immunosuppressant are involved.
Any advice welcome.
What a good start 😱🙄😀😀
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Foggyme
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I would error on side of caution and avoid contact which i know will be very difficult but you could phone your rheumy nurse and ask for advice as i find them very helpful. I hope you keep well 🌸🌸
Hi weathervane. I don't have a rheumy nurse but have managed to track down a telephone number for the rheumatology nurse practitioner helpline. It's only open for an hour a day (closed until Tuesday) so I'll give it a try and see if I can get through (no answer phone and they don't return calls, so we'll see).
Good advice, thank you...if I find anything out I'll let you know.
In the meantime, until I can get a definitive answer (if there is one) I'll err on the side of caution and avoid contact 😢😢😢.
I'm a bit baffled about the IgG antibodies to be honest. I have high IgG levels in my blood but the vascular doctor explained that is was a hallmark of Sjögren's. He didn't mention that it could offer protection against viral infections while on immunesuppression?
He did say that, in the case of Sjögren's, the IgG levels will not change with immunesuppression so are not indicative of active disease for me - they just are my normal - same goes for high PV/ESR. However, when I told him I'd had several sinus infections, an ear infection and a UTI over the past few months he nodded and agreed that Mycophenolate would make me more vulnerable to infections generally.
So if it were me I would definitely be over cautious just now as the whole purpose of Aza is to calm your overactive immune system and inevitably this will make you more vulnerable to viruses and infections. You really don't want chicken pox or Shingles.
My goodness Twitchtoes. Now I'm baffled too! And you're right, I most certainly don't want chicken pox or shingles.
All this is making me wonder about my GP...whose initial thought was to give me the live shingles vaccination (I stopped him).
Public Health England advised him to do bloods to test for a) previous infection with or inoculation against chicken pox and b) recent infection with chicken pox.
He did IgG (supposedly to check for previous infection etc) but failed to do IgM (supposedly to check for recent infection). But no idea if these were the particular blood tests advised by PHE - or something my GP plucked out of thin air (a not unusual happening, sorry to say).
So now I'm befuddled and stumped...especially as I'm waiting for a lip biopsy to check for Sjogren's. Based on what you say, the IgG antibodies detected (no level given) could possibly be due to Sjogrens, and not immunity to chicken pox?
So hmm...I"m going to be over cautious and avoid contact...just to be on the safe side.
weathervane has suggested I contact a rheumy nurse for more information - don't have one but have found a helpline number and will ring on Tuesday. So, if I find out any more information, I'll let you know.
Though I have to say, based on what your vascular doctor has said, think I'm just going to do caution, whatever the rheumy nurse - if I can get through to one - may advise 😉.
Thank you so much for popping along to reply. Really don't know where I'd be without all the advice available here.
Yep nightmare it is! And sorry to add to your load but I wonder whether it would have been better to wait for the lip biopsy to be done before starting Aza? I did read somewhere that immunesuppression can skew the results of the lip biopsy but this could be mostly steroids. But it's probably best to trust your rheumy to know about this. Only I had negative antibodies while on Methotrexate and Aza and had a rheum who tested all my antibodies while on steroids and then told me I didn't have a connective tissue disease at all! It was only when I was off everything that my ANA turned positive, my IgG showed raised and lip biopsy 100% positive - to everyone's amazement apart from mine! X
My ANA and C-ANCA were both 1:1600 when I was put on hydroxychloroquine and high dose steroids.
Rheumy then tested other antibodies - which surprise surprise were normal - and hence his reluctance to treat me, I think (because he can only 'suppose' UCTD). His words 'I can't find anything'. He was not happy when I asked if this was because I was on steroids and still had large amounts of hydroxychloroquine sloshing around in my system.
If it wasn't for the original results I suspect I'd have no treatment at all now. Despite the fact that I'm barely functioning - on any level.
So...already on steroids...and rheumy has now added the Azothioprine...good grief...no idea where this leaves me in terms of biopsy (which he knows is pending but was actually arranged by the ENT consultant). and I think you're right, the most likely result (given the drugs) will be negative...even if I do have Sjogrens - and I certainly have something. Good grief...why didn't I think of that 😱. Kicking myself.
So...not enough time to wean myself of the steroids...and if I delay starting the Azo, the rheumy may take exception (especially since I've been trying to persuade him to treat me for so long).
So...no idea what to do (except raise it with the Maxillofacial surgeons when I go for the biopsy). Or a better idea - think I'll try and give them a ring and ask for their advice.
And between this post and my other one that we've been chatting on, and considering what we've been discussing....perhaps I do need a new rheumy.
Thinking. Thinking hard 🤔🤔🤔🤔🤔🤔
Thanks Twitchytoes, input really appreciated.and so delighted that you eventually got a diagnosis...and treatment 😄
Oh dear sorry I have set cat amongst the pigeons. But I guess, if all goes well with the Aza and you tolerate it - then it won't matter too much what your lip biopsy shows or what your diagnosis is. Treatments for UCTD, Lupus and Sjögren's are broadly the same anyway. If Mycophenolate fails then there are no more options remaining for me with seronegative Sjögren's.
I doubt the max fax will know if steroids and Aza can skew your biopsy results - but then I've had a bad experience of a max fax who told me two years ago that I didn't have Sjögren's - on basis of plenty saliva and okay teeth. And even if I did he said there was no treatment so not worth having a biopsy for. Hmmm he wasn't far wrong about the latter comment but clearly way off about my autoimmunity!
My lip biopsy was conducted last year by a young dentist with oral consultant standing over her in the university dental hospital. None of them, apart from rheumy, have really been able to grasp that Sjögren's can be a neurological disease for some sufferers - me being one! X
Please don't worry about the cat and pidgeons Twitchytoes. Forewarned is forearmed, so I'll keep it on the radar...just in case.
And you're right, if all goes to plan (ha ha) and I have a good response to treatment, hopefully he'll just keep me on it.
My main thought is that if the biopsy is negative and I don't have a good response to the Azo...and antibodies are reduced because of the treatment, then I'll be told -like you - no autoimmune disease - no treatment needed. But not going to be concerned about that for now and will cross that bridge when and if it the need arises.
Interesting what you say about neurology and Sjogrens. I've long suspected that some of my symptoms are due to dysfunction of the autonomic nervous system, so is because I have Sjogrens with neurological implications, or is it 'just' related to other autoimmune induced symptoms. Or something else entirely. So, Something else that I'll be keeping on the radar.
You 'being one' might conceivable turn into me being two. We'll see.
Isn't it just astounding some of the things these specialists come out with...words fail me.
So sorry to hear that Mycophenolate is the only available treatment for you. My goodness, how on earth do cope with knowing that. Hats off to you Twitchytoes. I'd say that I'll keep everything crossed for you (and I will) but that just doesn't do it justice.
Just wondering, anything pending in the research department? Clinical trials? Treatments available abroad...just pondering as I tap and I bet you've thought of that.
I must have explained it wrong here but no one has ever questioned that I have autoimmunity Foggyme. I have a high ANA and high inflammation levels etc and autoimmune hypothyroidism. I'm seronegative, but my lip biopsy was 100% and this is definitive of Sjögren's - whether primary or secondary.
No antibodies SSA or B means it has to be positive in lip biopsy to be classed as Sjögren's at all. Secondary Sjögren's criteria is a bit less rigid but you would need to have a confirmed rheumatic disease already to meet the criteria for secondary.
So the seronegative version is always lip biopsy positive otherwise it can't be classified as Sjögren's at all - but is instead classed as Sicca Syndrome rather than a full blown systemic disease in its own right.
I am planning a trip down to the south of England for a one off private consult with the UK's Sjögren's expert. I would like to ask her about the research and ideas about treating small fibre neuropathy (SFN) and autonomic dysfunction of Sjögren's with IViG at John Hopkins in the US. This plasma infusion of inmunoglobulin has been shown to slow or even halt the progress of SFN in Sjögren's patients over there.
But here in U.K they have decided that, as it's usually self limiting, IViG will not be offered as an option for NHS patients with Sjögren's SFN. The vascular CTD doctor seemed rather astonished when I asked him about it and we both agreed that my neurologist would not put me forward for this unless it progresses to attack my central nervous system. Personally I'd rather not wait for this to happen! But at least Mycophenolate is also used for severe SFN so 🤞🏽
Being seronegative makes us more likely to have the neurological involvement than seropositive people. But they are more likely to develop non Hodgkins Lymphoma although this is usually effectively sent into remission with Rituximab. Both groups have an equal risk of kidney and lung involvement.
No Twitchytoes, you explained it very well. It's just that sometimes I miss the plot, even when it's right there in front of me🤔🙄.
The extra explanation is very useful, and likewise the guidelines. I'm going to print them off and read them tomorrow, when I have a new clearer morning head.
Hope you didn't think I was questioning your autoimmunity - it was more a questioning of the way some doctors refuse to 'believe' symptoms when not able to tick box the 'right' blood results. Sigh.
It's really good to be able to understand how autoimmunity affects others, cause it also helps with a better understanding what may be happening in my own cronky body. All here are so giving with information that it makes me feel quite humble.
A trip to the UK Sjogren's expert sounds like it will be very intersting and useful - can just imagine the list of questions you'll be taking. Really hope it brings lots of answers for you...or maybe another way to go forward.
But how short-sighted of the NHS not to offer the immunoglobin thearpy until the CNS is involved. Why wait! Appalling.
Suspect I have SFN (which is worsening) so will be looking out for your updates with keen interest.
Again, thanks for the clarification and information Twitchytoes...the radar will be much improved 😀.
You're very welcome Foggy. I thought perhaps that I'd conveyed that there was doubt about my diagnosis but there isn't any - apart from whether it's primary or possibly secondary to Scleroderma because this is what the pattern of my ANA indicates apparently. I don't have Scleroderma yet thankfully and I do have Sjögren's so mine is classed as primary. If only it was seropositive I'd be offered a little more choice and there might be more chance of mine being kept in check I think. But as I'm sure you know only too well - seronegative diseases are notoriously slippery!
Oh slippery indeed...heading in that direction, I think.
Think I need to do some research so that I can understand why seronegative Sjogren's have more limited treatment options - might be in the guidelines you sent - my treat for tomorrow 😉.
Well it's partly just me who has few treatment options because I've tried them all. But also because Sjögren'sis pretty much untreatable. I did post about my appointment last week and this explains why they often can't effectively treat it as things stand. It's all to do with the high protein levels and immunoglobulins in the blood I think.
Rituximab isn't used for seronegative people because it isn't effective for us apparently. So this just leaves the DMARDs- and I am on my fifth and last. X
Hi I asked my rheum consultant this very question yesterday as my 2 children aged 4 and 18 months haven't had chicken pox yet and I'm on mycophenolate and steroids so asked what I do when they get it. He said if I've had it then I'm immune and it's ok but I can have the blood test to check and if I'm not immune I'd have to go in to have immunoglobulins.
So he told me it's ok and I'd be very close contact! Obviously if u can avoid it then I would just to be on the safe side but unless I get sent in a little 'holiday' (that would be nice ha!) then Im not going to be able to!
Thanks for this Sara_A. I'm not sure if I am immune or not. GP only did one of the two required test (two because I'd recently been exposed to CP). So, to be on the safe side, I'm going to err on the side of caution and avoid contact until the incubation period is over.
Getting sent on a little holiday...oh how nice that would be for you...and no guilt because of enforced isolation. A double joy (but I bet you'd miss them 😉😀).
What on earth is your GP thinking of in trying to give you a shingles injection? My husband has shingles at the moment which he started with 4 weeks ago whilst we were away on a cruise and the doctor in the medical facility on the ship said the same thing that I should have an injection. Luckily I went to my GP when we got back and he said that he first wanted to check with my consultant before he would give me an injection. I told him that luckily had an appointment 2 days later with my Consultant and I would ask her. She told me it was the worst thing I could do. Because like you I am on immunosuppresants - in my case Lefludomide & Hydroxychloroquine for my CTD and RA, she said that would be the same as giving me shingles.
Her explanation was if you have had chickenpox you are more likely to get shingles and if you haven't had chickenpox, even though you can still get it it is less likely. No way does any autoimmune medication make you less likely to get viral infections, quite the opposite in fact, it makes it more likely.
Err on the side of caution - believe you me if you had seen my husband over the last 4 weeks and the pain of shingles you would definitely stay away!
Hi Bakbre. Yes...what on earth indeed! Unbelievable really. Good job I knew enough to to stop him.
And it's funny, the rheumatologist and clinic nurse keep saying that my GP should take responsibility for care between clinics - but there's no shared care agreement in place - but he hasn't got a clue about autoimmune conditions - or even some of the most basic things related to what you would assume would be fairly basic medical doctoring.
And I've been so busy thinking about chickenpox, that I hadn't even though of the shingles issue 😱.
So,thank you...good advice. I'm going to err on the side of caution and avoid contact until the whole incubation period has passed.
I'll miss the little sausages but rest up and enjoy - because they do,use up rather a lot of spoons 😉😀.
I hope that your husband's shingles (and that dreadful pain) get better PDQ.
Can you not change GP, either within the same practice or another practice completely? Especially if your consultant wants your GP to take responsibility for your care between clinics, which is what mine does really very well. You have a right to have a doctor who knows what he is doing - he could cause you a lot of harm. You are allowed nowadays to decide which surgery you want to go to. Please don't let yourself be fobbed off. I hate it when we have to go through all this just to get treatment - we feel bad enough sometimes without all the stress and aggravation as well.
Right I have got off my hobby horse now!
If I were you I would have a word with the Administrator at the Lupus Forum. His name is Paul Howard and you can reach him on paul@lupusuk.org.uk or ring him on 01708 731251. He would probably be able to give you information on surgeries in your area who are much better at auto immune diseases (they obviously couldn't be worse than you have at the moment by the sound of it!)
I wish you lots of luck and hope you don't miss the grandchildren too much!
Hi Bakbre. Have to say, I ride that hobby horse too. Difficult not to under the circumstance some of us find ourselves in.
Yes...I agree about changing GP's. Two of the good ones in our surgery have retired, the one I have is not much use (under statement) and the new 'joiner' is, by all accounts, not much better. (When I asked the nurse practitioner (who I've know for years and who was also leaving) about the advisability of swopping to the new GP, she smiled, said 'I can't possibly comment' and shook a very vigorous no head. So, no joy there.
My current surgery is the only one in our 'catchment area'. I know that's not supposed to matter any more but when I rang other potential surgeries, they all said that they were not taking on new patients - especially ones not in their catchment area. Some are even asking patients out of their area to leave the surgeries.
Not good, is it.
Your idea about ringing Paul Howard is a good one. I've had an information pack from Lupus UK and am just about to join, so when I've done that I'll give him a call.
If there's a GP surgery nearby who he can recommend, I'll contact them and see if they can accept me as a patient - perhaps by writing to a named GP, if possible.
It's so very tricky...at the moment I feel like I'm having to cope with this with very little medical support (my rheumatologist is not to good either). So...doing as much reading as possible...and will be posting random....perhaps quite strange...questions in the forum.
Thanks for your suggestions...very much appreciated.
And the grandchildren...oh yes, I do miss them (for now)...we do FaceTime but it's not the same as a good sticky cuddle or a world through brand new eyes conversation.
But it's not for so long, just counting the days.
Take care and keep well, and thank you once again.
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