Good morning all, I am a bit confused. On Monday my husband and I went to our medical centre for our Shingles vaccinations. Hubby had the 'normal ' one but I asked particularly for the non active Shingrix. All fine so far but my nurse rang in the afternoon to say that she was updating my records and because I had the non active one, I would need another in six weeks, she had previously said that we wouldn't need boosters for five years. Now I am confused and wonder if she has got mixed up somewhere. I have been like a pincushion just lately, had Pneuovax 23 for pneumonia a couple weeks ago and last week my 3rd Pfizer for covid. Advice please, I have an appointment with my CLL consultant next Monday so will ask her, just thought if I could get heads up from my friends here I would feel happier.
SHINGRIX: Good morning all, I am a bit confused... - CLL Support
SHINGRIX
Yes shingrix does require a second jab. I had mine three weeks ago and was told the next would be in eight weeks after the first. No side effects I’m glad to say. Had flu jab at same time. Keep well. Jude
Oh thank you so much, with so much advice about various vaccines, I was beginning to to doubt myself. You stay well too. KG2
Yes. Two shots required. Had mine last week and can book my second shot no earlier than early December.
Only side effect was a sore arm for about three days.
Have asked the Haematology team if I can stop taking Aciclovir after the second shot. The jury appears to be out on that particular question at present. I'm promised a more definitive answer at the next consultation in January. I'll let you know the result of that.
Hi thanks for that. I have appointment on Monday so will ask about Aciclovir. Stay safe x
I had first Shingrix in sept 2019, followed by second one in November 2019. But, had 2 separate limited outbreaks of shingles in May 2020 , was put on Valtrex twice, stayed in acyclovir twice a day and still had a 3rd limited outbreak of shingles in August 2020! I remain on Acyclovir twice a day. As am immune compromised CLL/SLL patient, I still had 3 outbreaks of shingles-each outbreak followed each Covid vaccine ( I have had 3)
My advice? Speak to your CLL consultant, but don’t assume you won’t have a shingles outbreak after Shingrix shots!
And post herpetic neuralgia (PHN) is part of my daily life
I was told that my husband could NOT have the live shingles vaccine because he would shed the virus and I am immunocompromised, so he had 2 Shingrix shots as well
Oh heck you have had a rough time of it. Wonder why we weren’t advised that my hubby shouldn’t have had the live shingles vaccine. Hope that I am going to be ok.
Dear ClassyLady, Thank you so much for this post. I am on Acyclovir 400mg 2 x day and have had 4 mild shingles out break in the last 5 months (took Valtrex several days). I asked my CLL Specialist if I could get the Shingles Vaccine and he said yes but DO NOT stop the Acyclovir. Now I am wondering why get the vaccine if I am going to have outbreaks anyway. I think I will wait until I see him again in a few months and discuss it. I feel totally confused.
Thanks again,
Nancye
My GP says the milder outbreaks were much less involved than other large outbreaks he was seeing in the practice ( on people who had NOT had the Shingrix vaccine) So, all considered, I feel the vaccine was a good choice for me😃
thanks so much for your post. I've had CLL for 16 years and had the shingrix shots while taking ibrutinib. five years after having the shots i succumbed to shingles. never told about having acyclovir as prophylactic. in august i began very painful shingles episode. still dealing with residual pain. did docs give you anything for the pain? any recommendations for how to deal with the pain?
also, my hemoc said to have a new round of shingrix vaccine next year, after my body has recovered from the shingles attack. have you had booster jabs of shingrex?
I am having a booster in two weeks.
Had mine last week, I must wait 8 weeks for my second, I’m also taking 2 aciclovir per day and my consultant has told me to continue with this as I’m also on acalabrutinib.Dave
You seem to be on the same routine as me. I take Acalabrutinib, Aciclovir twice each day, Allopurinol one each day and Co Trimoxazole Mon,Wed and Fri.All seems good so far with white count down from 250 to 44.1 in 8 weeks. Just had bloods done today in readiness for consultant on Monday. In spite of all the vaccines I have had over the past three weeks, I feel incredibly well.
That’s great news, yes we are like peas in a pod, started my acalabrutinib 8 weeks ago and on exact meds, but my consultant is not seeing me for 12 weeks, I thought I would be seeing him or getting bloods done once a month with just starting treatment, but I’m still also ok, my lymph nodes all disappeared after 1 week and I’m feeling good.Good luck, Dave.
Good news, perhaps we should continue to share notes.
Yes, I think we are also following each other, I also live on the coast in the North east in Sunderland.
I am heading to my doctors in an hour for Pneumonia( prevnar-13) , Flu( Flulaval) and Shingles ( Shingrix) vaccine . They said I would need a Shingrix booster in 8 weeks (or at some point, I think it was 8). I amthankful for this site, as the information here is why I asked my doctor to look into it!
Wow! Three vaccines in one day. I hope you are feeling OK today!
The doctor said it was ok to get all three, and I feel fine - except for sore arms 😀
weird how the opinions on vaxes timeframe differ. I was told no to all 3 at once and to space them out at least a week in between. Shingrix reaction was mild with more tiredness than normal and a very sore arm.
That's great! Lucky you with no reaction. I had a Pneumovax with the senior Flu shot last year and I had really bad chills for several hours. I shook so hard I could barely hold a glass to my mouth to get a drink. My doctor said I could get a vaccination every 2 weeks, but I'm going every 4 weeks. Shingles shot this Monday. It sure is great to have all of you here to discuss these things. Again BobbyFour, glad you didn't have any miserable reaction.
I have never reacted to a vaccine, except I was a bit tired after my first COVID shot. I hope that is not because my immune systemisn’t doing anything!!
Hope you are feeling ok this morning. I didn't want to have mine so close together because I generally have reactions. In fact it was a reaction to travel vaccines which brought my CLL to the surface. Stay safe x
My consultant said my husband was not to have the live shingles vaccine. This is because I am immunosuppressed and it could affect me. You would have to ask the hospital. The shingrix is fine for you and it is done twice.I had to confirm with my consultant and I booked my husband in for the shingrix. The gp didnt know what shingix was but the nurse checked and they had a few. She didnt understand why but I insisted. My consultant has written telling them I was to have the covid 3rd vaccine asap. He told them I was to have the pneumonia booster every 5 years.
They dont seem to know about cll treatment.
The consultant I spoke to previously put me on acyclovir and said was better for me than shingrix because I am taking ibrutinib. The consultant I am under now is more senior and I am going to ask about shingix again.
The nurse told my husband that shingrix is very expensive. You will be protected now, Anne uk
Dear Anne, When I had my Shingrix, the nurse told me that it cost the NHS£140 per shot--so we are lucky to it. To get the two jabs privately costs £500.
Interesting to read other posts about acyclovir. I am on Watch and Wait. Presumably, acyclovir is good to take if one is receiving treatment?
The consultant I spoke to 2 months ago said she was going to put me on acyclovir. The shingles subject came out of nowhere. I asked about Shingrix and she said that as I was immunocompromised she wanted me to have acyclovir.
We had a problem the month before when my husband was going for his shingles jab. My daughter told him to check its safe for him to be next to me.
I asked my consultant and they said no because the live virus could be passed to me.
He was able to have shingrix for that reason. I take ibrutinib and there isnt a problem.
The nurse told him it was expensive. Anne uk
Interesting. You have to have pneumonia jab boosters I have only ever had one (UK) I think I will ask about them after my Venetoclax has finished in March as I understand none of the jabs have much effect whilst obinutumazab is less than a year away or whilst still on venetoclax
People with leukemia should never have any live vaccine.
Agree but it seems my husband shouldnt have the live shingles vaccine either. It could affect me.My consultant has given me acyclovir and my husband has had the first Shingrix. I am immunocompromised and the live vaccine can pass to me.
Its something I am aware of but most people dont realise they have to stay away. That includes the nasal vaccinations the kids are given for flu. Anne uk
Same story; had Shingrix last Monday with the second jab to be arranged 8 weeks later. Had third primary covid jab yesterday and the flu jab is scheduled in 12 days time. The nurse who gave the Shingrix injection was precise about avoiding any other vaccines for one week after the Shingrix shot. I am eternally grateful to our wonderful NHS and will continue to vote for parties that will really protect it and us. Pragmatic, not political!Michael
I asked my Practise Nurse if my husband could have a Shingrix and she didn't know what it was. I explained the situation with CLL and live vaccinations. I was told that they didn't give it and told him to ask the hospital.
Shingrix is not a live vaccine. The first shingles vaccine was a live one.
My husband asked his hospital consultant about Shingrix he said he would write to his GP and ask him to order it. Heard nothing more but due to the covid situation I'm not surprised.
Yes two jabs. Shingrix is the non-live one. Both made me feel like I had the flu for about 12 hours and then I was good as new. I hope you don’t have any side effects but either way, it’s better than having Shingles.
Shingrix is a "dead" vaccine that everyone should now be receiving versus the previous "live" one. Not sure what they meant by "normal" but hopefully your husband also received Shingrix.
No they gave me Shingrix but my husband the usual adult one. Hopefully he won't shed vaccine to me. To be honest, I never thought. Feel ok so far, five days in.
In 2015 I was diagnosed with SLL and had 6 months of FCR chemo and went into remission. In early 2019 my wife got shingles in her eye. They were able to control it at the eye clinic but today she still suffers some eye pain. She insisted I should get Shingrix which I did. 17 days after my second shot I got shingles in the trigeminal nerve in my face. Two years later I still suffer from neuralgia in my lower face and a times into my tongue. My doctor discovered, after the fact, that if you have had any form of chemo, do not take Shingrix. This is something they do not advertise.
I realize I'll make few friends with his post .. but here goes.
Tho' I'm a clear advocate for the NHS-style of medical services, and once was a consumer of NHS medicine for 35-years, I've also just reached the same number of years within the insurance-paid medical services in the USA.
And, while there are persuasive reason attesting that many NHS GP/hospital services are to be preferred over the US insurance driven services, there are some dimensions where my US experience feels superior. The first is well illustrated in the series of posts in this Shingrix thread.
The consistent message from UK-based posters in this thread is that GPs and practice nurses have rudimentary knowledge about the 'jabs' they're providing. That's no surprise since they have a wide variety of common ailments to manage and so determining <which> injection goes to <which> patient can be hit-or-miss.
The reason why I prefer the system we have in the US is because virtually all vaccinations are administered by community-based pharmacists, not by nurses in doctors' offices or hospitals.
Pharmacists are highly knowledgeable about the jabs on offer. They have full access to the patient's prior history, sensitivities, and other relevant factors. They wouldn't fail to know, for example, of the double-dose regimen for Shingrix, or the inadvisability of Zostavax for a family member of a person with CLL. They know whether a patient is eligible for the highdose flu vaccine ... and the list goes on. With their records they know to prioritize access to immune-compromised patients for the covid booster. And, there's walk-in and by-appointment service often from 8 a.m. to 10 p.m., generally with no prescription needed. Just turn up. I can't recall ever having to make a co-pay ... and that's been the case even for the exotic jabs I've needed for third-World travel.
Now, please understand I'm not trying to start a 'which system is best' debate. Rather, I'm simply advocating that instead of nurses in GP-offices being responsible for selecting the right jab, maybe a different health-care professional might be better able to provide this service.
Caven
You must have a really great pharmacist. I would not give so much credit and faith to any of the pharmacists that I have gotten my vaccines from. I even had one pharmacist start to give me the wrong pneumonia vaccine. Fortunately my husband stopped him and asked which shot it was just as he was about to jab me.
I imagine there are arguments for each system. There are some people who are worried about being able to afford cancer drugs in the US.
This fiasco with vaccines is the first time I have known of. Previously the flu vaccine caused upset. The over 65 jab appears better for those with poor immunity but we have to have the one appropriate for our age.
The pharmacist checked this out and the over 65 jab isnt licensed for younger people because it wasnt tested on them. The doctors knew exactly what jabs to give. We dont have the high dose flu jab .
Shingrix has only been given on the nhs for a short time and is expensive. I think the basic knowledge of nurses and doctors doesnt include those of us with cll and the drugs they take. My gp wanted confirmation from my consultant that I needed a pneumonia booster every 5 years. The letter instructed the gp to give me the 3rd vaccine and a text with a date arrived.
We are in our own little bubble because the majority of patients will be more straight forward.
I appear to have drawn the short straw where health is concerned and have had a lot of medication including that for epilepsy which began when I was 21. Various operations and painkillers. I take ibrutinib and have ivig.
I am really grateful not to worry about money.
Unfortunately the nhs does not provide all the drugs and treatments you have. We have to wait for hospital appointments and operations. This is worse since covid. I am well looked after by haematology and my gp surgery.
I think we forget that vaccinations are mostly straightforward. My consultant is happy to write letters to doctors. Anne uk
As has been noted, you can get shingles even if you've had the Shingrex vaccine. I'm recovering from shingles now, five years after having the vaccine (two jabs, as noted). One theory about why i became a breakthrough patient is that my Shingrex shots occurred while i was on ibrutinib. The theory is that ibrutinib, Rituximab and obinituzimab diminished the antibody production of the Shingrex just like those drugs in many cases negated the effectiveness of the COVID vaccines. Nobody knows if this theory has any validity. So ask your hemoc or specialist or consultant, etc. about the efficacy of Shingrex if on a CD20 or BTKi. And whether as a CLL patient you should be on a prophylactic dose of an anti viral (acyclovir or Valtrex) forever?
I thought the antiCD 20 drugs diminished all vaccine efficacy sadly you have confirmed it
yeah, the LLS study has the data to show that Revlimid or Ominituzimab, etc. typically will inhibit/prevent antibody production. Ibrutinib and other BTKis also aren't helpful. also some evidence that venetoclax is a problem, too. Hopefully they'll be able to generate more data about this. i was six to nine months away from V when i had my covid vaccine jabs and i created huge numbers of antibodies. maybe LLS can figure out the right duration, etc.
I wrote in an earlier post that a consultant put me on acyclovir 2 months ago. When I mentioned shingrix she was adamant that the vaccine would not be affective for me. I am immunocompromised and take ibrutinib. I had fcr 11 years ago. My husband was told not to have the live shingles vaccine because of me. Anne uk
Yes I have to have 2 doses of the shin grid 2 months apart.
PICC line or not 
Shingrix 
Life after FCR.
Additional Shingrix Vaccination?
