Shingles

[Trev1]

At 63 years old am I susceptible to getting Shingles with CLL?

I was told today by a nurse that I needed to be 70 before being given the injection.

[annmcgowan]

Hi Trev the injection your nurse is referring to is the live vaccine available to everyone in the UK over 70.Unfortunately people with CLL can not have live vaccines.

We are at higher risk of shingles and there is a non live vaccine we can use called Shingrix. Unfortunately it is not available on the NHS yet. I believe it will be available soon.

Someone on this site did post to say they had managed to get Shingrix privately in the uk. Sorry I can’t recall where. Maybe someone on this site will have more information on this.

Ann

[Workers in reply to annmcgowan]

Before I was diagnosed with cll I always has a shingles fear (I’ve seen a few people with it in their eye) so I paid and had the injection when I was 60 ,so pleased I did,my husband reach 70 this year booked in to have the jab only to be told when he got there he couldn’t because of my treatment ☹️ so fingers crossed for him ,or I go away for two weeks !

[AussieNeil Administrator]

Since a diagnosis of CLL means you are immune compromised, you do indeed have a higher risk of developing shingles. The older zostervax vaccination is live attenuated, so CLL specialists advise not to have it. That's probably the vaccine provided for over 70's.

If you want some protection from shingles, you should ask for the Shingrix non-live vaccine (given in two spaced apart shots). It's pretty expensive and in short supply worldwide I gather, but far more effective than zostervax. It hasn't been assessed in CLL patients, (although it has in bone marrow transplant recipients), so some CLL specialists are taking a cautionary approach. Check with your specialist.

Neil

[Hidden in reply to AussieNeil]

I'd love to get a vaccine against Shingles since I've had Shingles 3 times in my life. Just am not sure if I can get one so will have to ask my Oncologist about the Shingrix shot. How far apart do you take this vaccine?

[AussieNeil Administrator in reply to Hidden]

According to the CDC, two to six months apart: cdc.gov/shingles/vaccinatio...

[Hidden in reply to AussieNeil]

Thank you!

[120940 in reply to AussieNeil]

My husband has been taking acyclovir for 11 months to prevent getting shingles. He takes 2 tablets of 500 mg each per day. I am concerned about the hallucinations and delusions and vision distortions. Could reducing the dosage help? The last time the oncologist stopped the Allopurinol, and he got gout. I had him take

Allopurinol again and now he is ok.

[AussieNeil Administrator in reply to 120940]

Hallucinations are a very rare side effect of valacylovir/acyclovir (very similar drugs, in fact valacylovir converts to acyclovir in the body). I've been on famciclovir/famvir for 6 months - coincidentally on the same dose and I note that hallucinations are not a reported side effect of famvir, though it has other side effects in common. See:

medicinenet.com/valtrex_val...

Ask your husband's doctor if your husband can switch to famvir. I note famvir also lasts longer in the body, so if unacceptable side effects continue, it may be possible to reduce the famvir dose.

Neil

[120940 in reply to AussieNeil]

Thanks I will ask the doctor about Famvir, the pharmacist says he has it.

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Might have to pay for it, it seems to be all over the map, who covers it and it is in very short supply at the moment...The cost is about $300 for both injections, and you need to order it well in advance.

~chris 🇨🇦

[Hidden in reply to Cllcanada]

Guess I'll have to check with the oncologist, my GP and my insurance company. I worry more about getting shingles again than I do about the flu.

[mrsjsmith]

Hi Trev,

Previous posts have said its available privately at a pharmacy in Hampstead in London, though I am sure it’s available elsewhere.

Perhaps check with your GP but I know mine was brought on by a period of severe stress. Ask what the signs are, I thought mine was another bad insect bite reaction. If recognised and treated quickly ( ie GP or in my case a quick trip to A&E at the weekend ) rapid treatment with Aciclovir should solve the problem.

Regards

Colette

[cajunjeff]

I took my first shingrix shot last month at md Anderson in Houston. I asked my nurse about getting the shot and she said I should get it there as it is in short supply in most areas. Until I take my second Shingrix shot I am on daily valtrex pills. If the vaccine is not available where you are, can you get access to valtrex (valacyclovir) pills? Shingles is no fun. I think the pills work well to prevent shingles is taken daily.

[Cllcanada Top Poster CURE Hero in reply to cajunjeff]

Antivirals don't prevent zoster reactivation they work after an outbreak and shut it down... often very quickly.

I have had a 'break through' shingles episode on prophylactic acyclovir and I far prefer Valtrex...however its a pro drug and harder on the liver.

So any signs of a rapid rash, seek immediate medical attention.

The very worse situation, is a rash on the end of your nose, this indicates occular shingles and you go immediately to ER, or you may loose an eye.

Hutchinson's sign

Vesicles on the tip of the nose, or vesicles on the side of the nose, precedes the development of ophthalmic herpes zoster.

This occurs because the nasociliary branch of the trigeminal nerve innervates both the cornea and the lateral dorsum of the nose as well as the tip of the nose. This sign is named after Sir Jonathan Hutchinson.

en.m.wikipedia.org/wiki/Her...

The other bad shingles is Ramsey Hunt, and I have had that,as well as trigemimal V2, they are ABSOLUTELY emergency situations in CLL patients, particularly those on treatment.

Ramsey Hunt

mayoclinic.org/diseases-con...

~chris 🇨🇦

[attarintiki in reply to Cllcanada]

Thanks for the info Clicanda. One more clarification please

Does regular intake of Temesta triggers OHZ for CLL patients ?

[Cllcanada Top Poster CURE Hero in reply to attarintiki]

I have no idea... does Ativan impact CD4T+ cells? They ride herd on zoster...

[blowinginthewind in reply to Cllcanada]

I have nerve damage to the root of my trigeminal nerve, from an accident years ago, and that is where I had shingles on the three occasions I had it. Not a nice place to get it, thankfully my eyes weren't affected. The shingles symptom started to show on Christmas eve lunchtime 12 years ago. Emergency doc gave me acyclovir and I wasn't poorly for very long.

[Justasheet1 in reply to cajunjeff]

Jeff,

Do they plan on discontinuing your prophylactic med after your second Shingrix?

Jeff

[cajunjeff in reply to Justasheet1]

So far as I know. Honestly I am not really sure why they give it to me. I assumed it was to prevent shingles. After the first shot I asked if I still needed to take it and he said I will stay on it until after my second shot.

[Justasheet1 in reply to cajunjeff]

Interesting 🧐

I’m seeing Dr Wierda for a clinical trial soon and have had both Shingrix shots. I wonder what he’s going to do.

Jeff

[Cllcanada Top Poster CURE Hero in reply to cajunjeff]

There is no data yet on the effectiveness of Shingrix in immuncompromised patients, so more protection is better in my view... antivirals and shingrix.

Hopefully we will get the ACIP recommendations yearly in the spring.

~chris 🇨🇦

[Fran57]

Hi. My husband had shingles, after he finished FCR and now takes Aciclovir daily as a preventative medicine.

Hope that helps.

Fran 😉

[120940 in reply to Fran57]

How long has he been taking what is dosage?

[Fran57 in reply to 120940]

Hello. He takes 400mg twice a day. He has been taking them ever since FCR five years ago. Consultant said to stop after a while after chemo and he got shingles ( which was really horrible!) so he asked if he could continue to take them and she is happy for him to take this dose all the time, and to double up if he ever gets any symptoms of shingles.

He doesn’t appear to ever have any side effects thankfully.

I hope that helps.

Fran 😉

[GMa27]

I am taking Acyclovir. My doctors do not recommend Shringrix at this time. Too new, not tested on CLL patients. Hopefully they come to an agreement either way.

[Trev1 in reply to GMa27]

What strength tablet and do you take them daily or when symptoms are discovered?

[GMa27 in reply to Trev1]

Acyclovir is a preventative medication. Like a heart pill. You take all the time. Not when symptoms come up. That would be too late... would mean you have break out of shingles. I am on 400 mg 2 times a day. I imagine I will be on it the rest of my life. Unless my liver becomes compromised. I get routine blood work to check on that.

[MsLockYourPosts Passed Volunteer in reply to GMa27]

Acyclovir is an anti viral and if you even suspect shingles you want to get on it or Valtrex IMMEDIATELY!!!! Hours count in counteracting shingles. Some doctors prescribe it to hopefully prevent shingles, but it is critical to get an antiviral if shingles is starting. Read up on symptoms - not all are the textbook blisters - and have a discussion with both your primary care and your hematologist about how to get help the fastest if you think something is starting.

[GMa27 in reply to MsLockYourPosts]

Definitely! The second I get the internal pain or the pop up mark on skin, I will run to get the additional medication. Hopefully will never happen. 🙏💕

[120940 in reply to GMa27]

How long have you been taking? What is the dosage? My husband has been on it twice a day 400mg for 11months and we are fixing to change to Famvir.

He is having distorted vision, hallucinations, and delusions. We think it’s rare side effects of acyclovir.

[GMa27 in reply to 120940]

This post was from a year ago.

My hematologist took me off Acyclovir few months after my last chemo. That was almost 1.5 years ago. She said it was for during my chemo.

If I do get shingles, I will get the medication recommended for it.

[starsafta]

While my doctors recommend Shingrix, thinking it might provide at least some protection, doses are trickling into pharmacies and it is essentially unavailable. First dibs are given to those who have already had their first dose and need the second. Medicare does not cover it when given in a doctor's office.

Statistics indicate that 1 in 3 get shingles. To me, that means that 2 in 3 do not. Thus, I chose not to take a prophylactic, which may or may not offer sufficient protection. I do, however, have a bottle of Valacyclovir, with instructions of how to use immediately should symptoms develop. Shelf life is 3 years. When mine expires, my doc will prescribe a new bottle. It feels like insurance, and I hope I never have to use it.

From descriptions of many who have succumbed, it sounds really unpleasant. May we all stay healthy.

[Trev1 in reply to starsafta]

Having the bottle of Valacyclovir available sounds a great option rather than having the injections

[Cllcanada Top Poster CURE Hero in reply to starsafta]

Considerably more than unpleasant from my experience...

Shingles has had a far greater negative impact on my quality of life than, CLL, Richter’s and damage from RCHOP, Imbruvica (ibrutinib)/Cipro and radiotherapy...combined.😩

Shingles reactivation should be considered by CLL patients as an emergency situation... particularly on the face, which is quite common.

~chris 🇨🇦

[DriedSeaweed in reply to Cllcanada]

Scary. Can shingles get into the brain?

[Hidden]

This is the first I have heard of people being on continuous preventative meds against shingles. The CLL was diagnosed after husband got shingles back in 2015 and his doctors have never said he should get this vaccine. Very odd. I guess he has just been lucky. I will ask about this next time we see our Oncologist for sure.

[BeckyLUSA]

I got my shingles vaccination in 2012. I got shingles in 2015, diagnosed with CLL in 2016. It was in the trigenial nerve and it went into Ramsey Hunt. I was out of town and went to an urgent care facility. The headache and face pain were so severe, I thought I had a sinus infection. But due to the Ramsey Hunt, and the whole left side of my face sagging, the doctor took one look at me and said I had shingles. I went on Valtrec immediately and it was a good 8 weeks before I was feeling any better at all. I have the periferal nerve pain in my head, face, etc. which will come and go every 6 months or so. I am on a profilactive dosage of acyclovir since I am on Ibrutinib and Venetoclax. The thing to think about is effectiveness. The old shingles vaccine was only effective 60% of the time. This percentage was out of the general population, not just people with compromised immune systems. The new vaccine has not been around long enough to get good data yet. Hopefully it will be much better than the old one. I would listen to my doctor and also stay abreast of all the new info as it comes out.

BeckyL USA

[Ginger09]

I have been told my doc here in the U S that that non-live shingles shot has not been approved yet for CLL patients. Has anyone heard different?

[Cllcanada Top Poster CURE Hero in reply to Ginger09]

That is correct... there are no recommendation by the ACIP for immunocompromised patients.. they are waiting for data.

Some doctors feel Shingrix double vaccine is fine in CLL, others are more cautious...

~chris 🇨🇦

[patagozon in reply to Ginger09]

[Dr. Lamanna:

It was not tested on patients with immunosuppressed conditions or CLL per se, so we don't know—we don't have a lot of data on our patient population. However, just like the flu shot and pneumonia shot, again, if—we hope that it would either, if somebody got shingles either shorten their duration or prevent them from getting shingles as something we would recommend. So, absolutely, I would recommend it.]

patientpower.info/video/an-...

[Jeff Folloder:

Outstanding. When I heard the news about Shingrex, the first thing I did was fire off an email to you, asking, can I have this one?

Dr. Keating:

Did I ignore it?

Jeff Folloder:

No, your answer was, yes, if you can find it.]

patientpower.info/video/vac...