Anti virals

[cartwheels]

I have been on ibrutinib 5 . 5 years and still bloods are very good and I tolerate it very well ,I live a normal life and do all the things I done before . This year my old consultant retired and I now have a new one and he seems very good . I had a eye infection a few months ago gave me cloudy vision thankfully all cleared up but since then I now have to take Aciclovir daily and even though I dont have any infections he is still prescribing it along with my 3 monthly ibrutinib . Next time I see him I will question this as in the past I only got prescribed Aciclovir when I had shingles etc and surely it cant be a good thing to take them longterm

[AussieNeil Administrator]

Long term use of antiviral prophylactics seems to be standard practice in the US, even, in some cases for those who have had been vaccinated with the Shingrix vaccine.

If your lymphocyte count is a good level and your T lymphocytes are functioning well, then you might be safe stopping the antiviral. Just keep in mind that the risk of shingles increases with age in the general population.

Right now, I wish my specialist had kept me on them, as I'm struggling with pain management after shingles. Last night was the worst. I didn't get to sleep until 4:30 this morning.

Neil

[Shrink in reply to AussieNeil]

so sorry you’re experiencing this Neil . You’re so present to always help and support all of us ,so , now I’m sending you lots of care and support.

Warm hug without touching

Cyn

[Panz in reply to AussieNeil]

Neil, boy do I feel your pain as I have had to deal with the exact same thing….it lasted 3 years for me and that was non stop pain. Even now when under stress that nerve talks to me. They tried so many things and NOTHING worked. Please keep this front and center for anyone in our community who hasn’t taken Shingles seriously. I in my case I had had both Shingles vaccines but didn’t make the antibodies as I wasn’t on IVIG at the time and my IgG was jut 200.

I too struggled most while trying to sleep.

I pray you are able to find a solution!!!

Panz 🙂💕🙏👍🌈☘️

[HopeME in reply to AussieNeil]

Hi Neil:

I’m sorry to hear of your condition and the pain. Hopefully, it abates soon. I’m curious did you receive the Shingrex vaccinations?

[AussieNeil Administrator in reply to HopeME]

In short, no. Shingrix vaccinations only became available late June last year in Australia and are about US$400 for the two jabs, IF you can track them down. I'm about 300 miles from cities where I could try and do that. More importantly, my B cells only began reappearing in small quantities from March this year, so I doubt I'd respond much to any vaccinations. Also, I've been on regular IgG infusions for 6 years now, so an antiviral is probably my best move.

[HopeME in reply to AussieNeil]

Thanks for that feedback. I hope your doctor can figure out a way to give you some relief.

I had the Shingrex vaccinations but no ongoing acyclovir. It doesn’t seem like there is settled protocol in this area. Some doctors don’t rely on the Shingrex vaccinations. Some rely upon Acyclovir and some do both as you note and others don’t do either. It certainly isn’t easy figuring out how best to approach the shingles risk.

Best,

Mark

[Pogee in reply to AussieNeil]

Best of luck to you, Good Sir! Have you heard of or tried lidocaine hydrochloride jelly 2%? It's an Rx ointment which is considered a good topical treatment of choice for shingles. (Get multiple larger tubes, if available) Also, lidocaine patches might be of some value. In the US, 4% lidocaine patches can be purchased over the counter, while 5% patches require a prescription.

[AussieNeil Administrator in reply to Pogee]

Thanks for the tip. I did try some lidocaine for oral use that I had on hand - no obvious improvement. Perhaps it's not strong enough.

[CCgroup in reply to AussieNeil]

Hi Neil & cartwheels - I've be on ibrutinib for about 3 years, and for me it is working very well. I had both shingles shots, no reaction to either of them. It should possibly be recommended to avoid a nasty experience.

[PaulaS Volunteer in reply to AussieNeil]

So sorry to hear of your continuing pain, Neil. Sounds horrific...

Last week I had my second Shingrix jab. Its the experience of people like you that motivated me to get the second dose, as I felt extremely tired for weeks following the first dose. I realise that was nothing compared with what you are going through though.

Hoping and praying for a quick and full recovery for you.

Paula

.

[Ginajetta in reply to AussieNeil]

I hope your pain subsides soon. I share Shr ink’s sentiments.

[CycleWonder in reply to AussieNeil]

I am so sorry to hear you are suffering from Shingles pain. You are always so kind and full of useful information. My heart goes out to you.

[1ofakind in reply to AussieNeil]

sorry you are struggling with this …. Being unable to sleep and in pain is terrible - Wishing you speedy relief and recovery with strength to overcome this debilitating pain …

Feel Better !! We care!!

[kitchengardener2 in reply to AussieNeil]

Oh so sorry that you are still having trouble with pain Neil. Pain is so draining, hope you feel better soon, try and catch up with some sleep today. I take Aciclovir twice daily and have done since I began treatment. I have also had my Shingrix jabs. It has of course been so different over the past almost three years but I have been lucky enough to avoid infection apart from an occasional UTI.

Stay safe Neil, you are always there to support us, hopefully our words of support will help you know we appreciate all you do. Now get a nice cuppa, a book and put your feet up. Take care xx

[Livingwith67 in reply to AussieNeil]

sending wishes for a better day for you today and moving forward.

[Fran57 in reply to AussieNeil]

Neil, I’m so sorry to hear of your pain; I sincerely hope it is short-lived.

Take care,

Fran 😷

[Hidden in reply to AussieNeil]

Feel better Neil! 🤞💫🙏

[lisakc1 in reply to AussieNeil]

OMG! You do so much for this community, I wish that I had your knowledge and a solution to your suffering! In the US, we too have to pay about $500 for the shingles shot. Since people suffer at home without a hospital stay, I guess insurance doesn't see the need to cover it. I'm wondering if once you regain your immunity, T/B cells, that perhaps the Shingles vaccine will help? This is a condition that receives way too little attention, and hope that your pain resolves quickly!

[Ladylin151 in reply to lisakc1]

This is totally dependent on your insurance. It will be charged to your prescription plan. Most private insurance will charge no copay for people over 50. Medicare prescription plans usually charge <$50. The currant average cost without insurance is $140 per dose.

[Vlaminck in reply to AussieNeil]

So sorry to hear about such pain! Not getting sleep hurts all on its own. Hope it passes away soon (shingles pain does go away, right, comes and goes like herpes?)

[AussieNeil Administrator in reply to Vlaminck]

Thanks Vlaminck,

Shingles is caused by one of the human herpes viruses - herpes zoster, which is a reactivation of the varicella-zoster virus in a person who has previously had varicella (chickenpox). Prophylactic antivirals largely prevent that reactivation, or if you aren't on them but are given them early enough when the shingles rash breaks out, can prevent damage to the affected nerve. It's the nerve damage which causes the most common complication - postherpetic neuralgia. That's what I'm painfully going through now. I haven't been able to keep the pain under control all the time. Also the medications cause drowsiness and make it hard to think clearly.

WebMD covers this well:

webmd.com/skin-problems-and...

Neil

[Vlaminck in reply to AussieNeil]

So sorry, Neil. BTW, WebMD is owned by a very slimy billionaire person (could get more detailed privately) so I try never to use that site and hope no one does -- just passing on.

[AussieNeil Administrator in reply to Vlaminck]

Please let me know the details privately, thanks.

[Vlaminck in reply to AussieNeil]

Given SofiaDeo's comment below, maybe it isn't need it -- but if you still want, let me know.

[SofiaDeo in reply to Vlaminck]

True about the ownership, but my understanding is that this website and its' funding is the attempt to "look good" and have at least one instance of "helping society". The people actually running it/doing the posts are not of the same ilk.

It's similar to how an uncle I had, was a total religious hypocrite, yet gave $$$ to the local church to "be a pillar of the community." The church took the $$$ and did good with it, they didn't refuse it knowing he never went, drank alcohol, etc etc.

[Vlaminck in reply to SofiaDeo]

Thank you, SofiaDeo. I didn't know about it except the owner.

[fapumpkin]

I completed six years on ibrutinib in June of this year, and I started a daily dose of 400mg Aciclovir, 6 years ago, which I am still on. Unfortunately I am not old enough to be entitled to the Shingrix vaccine on the NHS, so I am greatly relieved that I am still prescribed Aciclovir, and hope to remain on it until I can have the vaccine.

[Strech51 in reply to fapumpkin]

Hi fapumpkin. I have had the Shingrix jabs from my GP's surgery which is NHS. I am not entitled to free treatment as I like you, I am not old enough. However, I decided to pay for them which cost £193 per jab. As I had heard about the effects of shingles, I thought it was worth paying for. Previously my GP had given me a course of Aciclovir. 800mg x 5days in readiness in case I got shingles. Luckily, I still have the Aciclovir and never needed to use it.

[fapumpkin in reply to Strech51]

I asked my gp last year if I could pay for it, but they do not offer this service and so far the only place I can find is in London, I live in West Cornwall

[Strech51 in reply to fapumpkin]

I would try again as the NHS should provide this service. Possibly try contacting the Pharmacy if they have one at your surgery. You may ask for a second opinion, try speaking to your CLL health team they may contact your GP about the benefit of having the jab. I suggest that if you want the Shingrix jab don't give up. In my case my GP who is very understanding passed the request to nurse who orders drugs for the surgery the jab was ordered which also shows a cost. I was then called in paid for the jab and then got jabbed, did the same two months later. Hope it works for you next time.

[camper2 in reply to fapumpkin]

I had Shringrix as soon as it was available in the UK (before it was offered on the NHS). That was about 4 or 5 years ago and I paid about £450. It is now about £600 privately I think but, honestly, it’s such a worthwhile investment. I treated it as my birthday and Christmas present. When you see and hear how people suffer with the residual pain, you will see it is money well spent!

[PaulaS Volunteer in reply to fapumpkin]

I am now over 70 so I qualified for free Shingrix vaccinations (in the UK under NHS). .

For everyone over 70, it's worth asking your GP surgery for Shingrix vaccination as they may not take the initiative in telling you about it. And as others have said, if you're not over 70, it's available if you pay for it privately.

Has anyone here who is not yet 70, managed to get Shingrix on the NHS? When I was about 65, my GP surgery offered me the Zostavax vaccine - which is LIVE and NOT recommended for immuno-compromised. (Zostavax is also not so effective against shingles, even for non-immune compromised people).

Sadly we have to stay alert and be our own advocates..

Paula

[SofiaDeo]

was it a viral eye infection? Do you know what caused your eye infection? If viral, prophylaxis for at least a short time after treatment may be prudent.

[cartwheels in reply to SofiaDeo]

cant remember the name of the infection but one caused by immune system,was treated with two lots of eye drops one a antibiotic . They said in most cases it clears but if it returns then they will do further tests to determine the cause

[terryI_uk]

I was given acyclovir while taking ibrutinib on the flair trial, 2.5 years until unable to continue because of side effects, Terry

[stevesmith1964]

hi

I am on aciclovair since coming ending my O infusion along with antibiotics for 18 month's. On acalabruitnib daily. I believe it gives long term protection and kept my 3 covid infections managable.

[Pageboy]

I am on Aciclovair at the moment while I go through my Obinutuzumab cycles. I’m desperate to come off any ‘extra’ medication but perhaps this is a cautionary tale. Hope you start to feel better soon, Neil.

[Mtk1]

I’m on aciclovir, and I’ve also had both shingrix vaccines, wishing Neil well, shingles is awful, so taking a couple of tablets on 3 days a week if it helps is ok with me. Dave.

[TruthJunkie]

Hope that you feel better very soon, Neil. You are such a wise and kind voice here. Aloha.

[Fran57]

Long may you continue to do well! 😉

My husband takes Acyclovir daily…. he would never want shingles again!

Stay safe,

Fran 😷

[michaeledward]

I've been on alcyclovir since 2014 to protect me from getting mouth sores which developed when I started taking ibrutinib. I haven't had any problems with it and I have read that alcyclovir could be protecting from other possible infections. My only concern is the possibility I could be developing a resistance to acyclovir, but I don't know if that is actually the case and I choose not to worry about something that I have no control over.

[AussieNeil Administrator in reply to michaeledward]

The chicken pox virus is very stable, which is why we can get lifetime protection from another infection from either having chicken pox or the vaccination.

[Angie4now]

Praying that your pain subsides and you feel better. Sending 🤗🙏.

[CLLCalifornia-USA]

I’ve had shingles 3 times and it’s the worst pain I have ever endured. My oncologist asked me to wait 1 year when Shingrix became available. We wanted to make sure it was worth getting it without issues. I pray it continues to work.

Good luck Neil. Hope it’s over soon. Sally

[Peacekeeper]

4 years on Valtrex due to nearly dying from septic shock caused by cold sores in throat when my immune system tanked. So far no side effects and nary a cold sore since. Currently on 2 Ventaclax maintenance dose. Bone marrow now normal though V since drags my neutrophils and platlets down.

[Analeese]

I started alcyclovir before I started O and V. At the time I had a fungus on my toe that I had been dealing with for years. The fungus disappeared. After stopping V a year later my toe under the nail turned black, (looked like dry blood). Testing showed the fungus was back. Doctor Dermatologist, said the alcyclovir was not the reason it cleared up, but I’m not convinced.

Neal I hope you start feeling better soon. My back keeps me awake in pain often so I understand your pain. 👍👍

[BeckyLUSA]

My specialist put me on acyclovir when I started Ibrutinib and have been on it ever since, over 5 years now. He informed me that Ibrutinib can sometimes cause a reactivation of shingles which I had 2 yrs prior to my diagnosis. I will gladly take it to avoid a return of shingles. When I asked him about Shingrix instead, he said it would be safer in the long run to continue the acyclovir as long as I am on the Ibrutinib as we are unsure if the shot would even do me any good as I might not build up any antibodies. We will consider Shingrix when/if I stop the Ibrutinib.

BeckyL USA

[Katinlr]

I have been on Valacyclovir which is the American version of acyclovir for 10 years and have no plans to stop. I had two cases of Shingles, the last one very severe. Dr. John Byrd is very adamant that I stay on the antiviral. He says that he has seen too many terrible shingles cases.