I am getting conflicting advice about having t... - CLL Support
I am getting conflicting advice about having the shingles injection that is to be available to over 70s in the autumn. Anyone really know?
Everything I've read indicates that CLL sufferers should not be given live vaccines - and the shingles is a live vaccine. So I'd avoid it.
Chris from CLL Canada's answer to the same question raised in an earlier post: SHINGLES AND CLL cllsupport.healthunlocked.c...
On to CLL and Zostavax vaccine....NO NO NO.
World leading CLL researcher..
"Professor John C. Byrd, (M.D. D. Warren Brown Professor of Leukaemia Research Professor of Medicine and Medicinal Chemistry Interim Co-Director, Division of Haematology-Oncology, Department of Internal Medicine Associate Director for Translational Research, The Comprehensive Cancer Center The Ohio State University Columbus, Ohio, 4321,)has released the following statement for dissemination -
"I have seen a lot of questions about vaccines that have live vaccine components. In particular, the varicella zoster virus vaccine which should not be given to CLL patients due to their immunocompromised state. Some practitioners are mistakenly giving this and it places CLL patients at risk. CLL patients can be administered vaccines that are not live (such as the pneumovax). Please feel free to disseminate this. "
Dr. John Byrd
................................................
The CDC is very clear on this...
'Groups NOT recommended for vaccination
Zostavax should NOT be administered to individuals
with a history of anaphylactic/anaphylactoid reaction to gelatin, neomycin, or any other component of the vaccine
with a history of primary or acquired immunodeficiency state, including leukemia, lymphoma, or other malignant neoplasm affecting the bone marrow or lymphatic system, or with acquired immunodeficiency syndrome or other clinical manifestation of infection with human immunodeficiency viruses;
receiving immunosuppressive therapy, including high-dose corticosteroids;
or who are or may be pregnant.
CLLSA :Shingles and the CLL patient. cllsupport.org.uk/Shingles.htm
"Please note that the shingles vaccine contains live virus and should NOT be used for CLL patients or for anyone who is immune suppressed."
Thanks Nick! I couldn't have said it better! 
Just like to add, people think the Zostavax shingles vaccine gives 100% protection...it doesn't. In healthy people in their 60s it gives 52% reduced risk, this drops to 40% in the
70’s year olds and to 20% in 80 year olds...
The best advice is not to have the vaccine, if you have CLL.
Even the new Merck drug label states...
Contraindications...
'Primary and acquired immunodeficiency states due to conditions such as: acute and chronic leukemias; lymphoma; other conditions affecting the bone marrow or lymphatic system; immunosuppression due to HIV/AIDS; cellular immune deficiencies.'
merck.ca/assets/en/pdf/prod...
Pretty clear...
8 months ago, I had a shingles outbreak on my face, which seriously damaged my nerves, caused drooping of facial muscles and shoots pain to this day into my eye, teeth and jaw...
Its a fun thing they call post herpetic neuralgia... PHN. I was on antivirals within 18 hours of the first shingles rash, but still the damage has been extensive.
It is improving month to month, but there is a long way to go...
Unfortunately, for me, shingles is part of my journey into the CLL Twilight Zone... as Nick
so accurately named it.
~chris
I had shingles vac (recommended by same Dr. who diagnosed my cll) in 2007.Should I be okay since its been about 8yrs ? And has anyone pre any treatment been hit with sudden and widespread guttate psoriasis ?
Generally, CLLers are considered at high risk for Shingles vaccine, which in healthy 60 year olds is only about 52% effective.
Shingles vaccine, Zostavax is a live attenuated vaccine, and the view is there is a risk of reactivation of the virus in CLL patients...
The drug label clearly indicates that it not be used on leukemia or lymphoma patients... have your doctor read it...
The recommendation was in 2008 so you doctor was not aware at the time...
Chris
I presume kitcat, that you had the shingles vaccination 8 years ago? If so, I'd suggest that you inadvertently may have lessened your chances of a future shingles outbreak. If anything adverse was going to happen, I would have expected it would have done so well before now. You've most likely been exposed to the virus (as most of the population has) in your childhood - it's the virus that causes chicken pox. It remains latent in your nerve cells and can reactivate decades later as shingles, with that more likely to occur in immune compromised people. Your vaccination may have improved your immunity - though as Chris says, the vaccine's effectiveness reduces with your age - and of course with the progression of your CLL.. In any case, you still need to be alert for signs that you are developing shingles so you can have it confirmed and get an antiviral prescription to reduce its severity.
With regard to your guttate psoriasis, (and I'm guessing that what you thought may have been shingles has been diagnosed as this skin condition). what's been recommended by your doctor or CLL specialist? Have they looked into whether it has been triggered by an underlying infection and given you any treatment for that? Your CLL may have increased your likelihood of having the psoriasis due to your lowered immunity. This is all conjecture on my part - you really should seek medical advice and ask whether your lowered immunity from your CLL could explain why you've developed this skin condition.
Neil
Thx Neil,no I didn't think the psoriasis was related to shingles. I'm sure I am sounding a hyper,so many things going awry.Wcc at77(last Oct) and lymphocytes 64,sudden widespread psoriasis,sinus issues,left eye feels , funny and has blurred spot.(been to specialist but he couldn't see anything),major gas and bloating,,I get floaters (in eyes) everyday,,I could go on but will spare you
Do you know how much your CLL has affected your immunity? How healthy are your neutrophil and immunoglobulin levels?
Neut..7.4 Is there another term for immunoglobulin as that is not on my report? lymphocytes are 64.4 RBC is 5.21 Platelets 703,Thromocytosis is present,smudge cells(whatever that is) present...oh and Monocytes 2.0 Basophil is .4...So there ya go and thank you for caring enough to ask...Cat
Cat, you have a very healthy level of neutrophils, which is great news. You won't see your immunoglobulins on a standard blood test, though your specialist may have requested a test of them occasionally in the past. In Australia the immunoglobulin test is referred to as a 'Serum Protein Panel', so see if you've got a copy of such a test, which shows your IgA, IgG and IgM antibody levels. These typically trend down as CLL progresses, so your body is less able to mount a defence against infections you've previously had.
With regard to your other results, your RBC is great! Smudge cells are just fragile cancerous B-cells that break easily during the blood examination process and are commonly observed in leukaemia patients. Thromocytosis just means a higher platelet count than usual (upper limit is around 450) You have a higher level of moncytes than usual, which could be due to an infection.
You really should check with your specialist/haematologist about the psoriasis as I'm not medically qualified. As your ALC climbs, the automatic counting becomes less accurate, for example a percentage of the B-lymphocytes get mis-categorised as neutrophils. Your specialist should have a good feel for the impact of that distortion and hence should be able to tell you whether you appear to have an underlying infection that is behind your psoriasis.
Neil
Thanks Neil. So much is down to immunity isn't it..I also just got diagnosed with osteoarthritis and have had FM for about 20 yrs...but I'm good and life goes on..Thanks again..Cat
hi Kitcat,
The first time I noticed floaters in my eye, I had them checked at the eye clinic. The doctor put drops in to dilate the pupils, and after close examination he said it was a harmless vitreous detachment - a common thing as people get older.
But suddenly one day the floaters were different - darker and more of them - like a swarm of little flies buzzing in front of my eye. Then the flies seemed to get tails and looked like tadpoles! (A very strange sensation!) I also started seeing flashing lights in the corner of my vision. I went to the emergency eye clinic and was diagnosed as having a torn retina. Within a couple of hours, they had done laser surgery to repair the tear. If a torn retina is not repaired, it can lead to a detached retina.. very serious and can cause blindness.
So, I realise you've had your eye checked already, but I thought I'd tell my story as a warning... Don't assume that floaters are always something harmless...
allaboutvision.com/conditio...
Paula
Thank Paula...we sure don't need those teenager drugs do we..got our own light shows ha ha !
Hopefully you saw an ophthalmologist, not an optometrist...
CLL on rare occasion can infiltate the eyes...this is certainly something you need to pursuit...
The other 'eye' thing in CLL is shingles in the optical nerve... again it is rare, but it can cause loss of vision...
I think you need an appointment with you CLL specalist, who may be able to refer you to an ophthalmologist , familiar with CLL.
This can't wait...
~chris
I believe part of the confusion lies with the fact that at one time the CDC advised that we get the Shingles Vaccine. CLL doctors and others bombarded them with letters telling them why their advice was incorrect. They then changed their guidelines, but some doctors may have seen the old ones and are not up to date.
Pat
I don't know what the new shingles vaccine is,but what my husband(who has CLL) was told, was he shouldn't have any live vaccines.
I wondered if anyone can give any advice?
My 78 year old dad was diagnosed with cll 11years ago and thankfully has never needed any treatment as his yearly blood tests have been stable.
At this years appointment his consultant informed us that he should have the flu jab but under no circumstances should he have the shingles vaccination.
Unbeknown to me, my dad went to the doctors last week and whilst he was there the Gp gave him his flu jab and the shingles vaccination. (My dad had completely forgotten about what the haematology consultant had told him).
I’ve spoken to the Gp and she says it’s fine for him to have it as he hasn’t had any chemo recently. I explained the advise his consultant had given. When asked what potentially the impact might be to my dad she said she didn’t know.
Can anyone advise what the risks may be and is there anything else we should do?
Many thanks
Kathy
Hi Kathy...
Its clearly stated on the drug label...the GP might wish to read it. Zostavax is contraindicated in blood cancer, lymphoma and leukaemia...
4.2 Immunosuppression
ZOSTAVAX is a live, attenuated varicella-zoster vaccine and administration may result in disseminated disease in individuals who are immunosuppressed or immunodeficient. Do not administer ZOSTAVAX to immunosuppressed or immunodeficient individuals including those with a history of primary or acquired immunodeficiency states, leukemia, lymphoma or other malignant neoplasms affecting the bone marrow or lymphatic system, AIDS or other clinical manifestations of infection with human immunodeficiency viruses, and those on immunosuppressive therapy.
Drug Label
fda.gov/downloads/biologics...
At this point there is nothing much you can do, but don't for a moment expect that a 78 year old would get much protection from zoster virus vaccination..studies show it is only about 20% effective in this age range....
So, monitor for shingles going forward and should any rash appear, do not consider your father well protected, but act immediately to get a shingles diagnosis and antivirals.
I have had such devistating perminent after effects from shingles, I believe it should be considered an emergency situation in CLL patients...
~chris
Because the shingles vaccination is a live (attenuated) vaccine, there is a small risk with immunocompromised patients that the vaccination may cause a hopefully mild form of chickenpox. With CLL, we are more immunocompromised during treatment, but there is still a risk of infection even in watch and wait. Ask your dad to let you know if he gets any symptoms of chickenpox and if so immediately contact his specialist for advice - perhaps he may need to be prescribed an a antiviral If your dad has never had chickenpox, I think the vaccination may have increased his risk of contracting shingles later, but I'm not a doctor.
You can take considerable reassurance that this is a common mistake unfortunately, but with a very low risk. (I've heard of this happening fairly regularly from reading CLL support forums, but don't recall anyone actually reporting subsequent problems.) On the positive side, it may have reduced his risk of developing shingles later.
Neil
Thanks for the info.
He seems okay so far. I’ve spoken to the consultant this morning she’s says he shouldn’t have had it and the most likely outcome will be that he’ll get chickenpox or the worse way, possibly shingles. She hasn’t suggested antiviral at the moment. He probably has had chickenpox as there’s five of us and 18 grandchildren.
So think it’s a watch and see what happens. Given the posts on here it’ll be interesting to see if anything developes
Kathy
If your dad shows any possible symptoms of chicken pox or shingles, don't wait- treat it as an emergency, get the heavy dose antivirals started in hours NOT days.
You may even want to ask the consultant to prescribe the antivirals for a shingles outbreak before any symptoms, and if no symptoms develop, he can use the same pills at a much lower daily dose to prevent shingles in the future.
Many of us with CLL in the USA are on low levels of antivirals daily to prevent shingles.
Len
