Hi all
Has anyone had shingles post FCR. Ive had it for a week now and just finished a course of Aciclivor 800mgs 5 x a day. Spread of the rash is continuing although slower. Anyone have any idea how long this painful virus lasts and any advice for dos and donts thanks.
Hi. I hit shingles in March this year and still have the neuralgia pain all the the time. I'm on acyclovir 800mg 3 times a day and gabepentin 3 times a day and another pain killer. It can hang around a long time so keep an eye on the rash and make sure your doctors are fully aware of it - don't be frightened to hassle them it can be a nightmare of it goes on and on. Good luck
Hi
Thanks for the info. I was aware of the continuation with neuralgia but thought it was rare. I was hoping to doge that bullet. Thanks.
Mick
It is quite rare which is why early treatment is essential. Mine has now mutated into granulamatisis (wrong spelling! 😂) which is a nightmare hence the warning. Good luck with it. Lisa
Yes. Shingles was horrible. I can't say if there was a direct connection with CLL or FCR. I think the general consensus is that there is no known connection.
Both CLL and FCR lower your immunity, so it's a recognised problem that dormant viruses in your body like the one that causes chicken pox first time around and shingles subsequently, can reactivate. That's why prior to starting FCR treatment, you should be tested to see if you've had viral illnesses that remain dormant in your body and if so, put on the relevant antivirals until your immunity recovers sufficiently.
I had Shingles wrapping around my torso from navel to the center of my back. 2.5 years later, the area is still slightly numb. If it was stress that brought it on, then it was a hostile confrontation with a criminal taxi driver on a trip to Delhi, India.
It's recognised that continuing stress can lower your immunity, which I guess can include confrontations with criminal taxi drivers 
.
There is no conclusive evidence that stress triggers shingles... a study in the Oxford Journals of almost 40,000 people...concluded...
We found no evidence that psychological stress triggers HZ. The risk factors for HZ remain unknown, as are the molecular pathophysiological triggers for reactivation of VZV; these are areas of ongoing study.
Patients should, however, immediately seek care for suspected HZ so that the illness can be controlled and curtailed with timely antiviral treatment and pain manage- ment, regardless of the underlying HZ trigger.
My shingles was on my face, a very bad rectivation, that has caused numbness and pain for 4 years...in my case the post herpatic neuralgia [PHN] is permanent... a daily reminder...
That is why shingles in CLL must be taken very seriously...
Shingles occurs during or after treatment when your CD4+T cells drop, and the virus reactivates, moves down a nerve and out into the skin...
After FCR the CD4+ T cell levels can stay suppressed for a year or more, this is the time we need to be proactive about reactivations...
~chris
Are you not continuing on an antiviral?
Just finished a 7 day course yesterday. Butnits still as bad.....
Someone with more experience needs to comment on this. I thought you would remain on an antiviral at least until symptoms stopped spreading. I would certainly ask your doctor. I hope things start improving soon!
I came down with shingles 2 years after FCR. It started in my mouth and then went to my lip, chin and up the left side of my face and inside my ear. After a couple of weeks, I got some palsy - the left side of my lip and eye drooped. The droop lasted for 3 weeks. I was fortunate not to get any post hepatic neuralgia, though. I did go on anti-virals within 48 hours of it starting.
I had shingles prior to FCR and was put on acyclovir for 7 also. The rash stopped spreading but was painful for about 2 months. Sometimes I thought the pain was gone but then I would get a sudden shock like pain out of nowhere. My doctor said I could take gabapentin for awhile which might lessen the pain but I opted not to as I was already on so many meds. I started FCR about 5 months later and was put on acyclovir again 800 mg twice daily. My CLL specialist said I should stay on it for the rest of my life as I will always have the chance of it returning due to CLL lowered immunity. So I am still taking it. 2 years later I have no pain in the area but if I touch the area and hit the nerve that was affected, I still get a strange sensation. I hope you recover soon.
Thanks for the info.
Haven't had shingles - but my consultant encouraged me to remain on Aciclivor since completing FCR well over 2 years ago as my immune system is permanently weakened. I take 800mg every day. Really don't like taking all the tablets I am on - but at least I haven't had shingles.
Am interested that you only appear to have been taking Aciclivor since succumbing to shingles - and wonder why - unless your immune system recovered quite well post FCR. I know for some it does.
Hi Mick,
I had my first round of shingles at 35. My GP sent me to NYU Skin and Cancer Clinic because of being so young he thought it had to be something else. Wrong, it was shingles. I was healthy and fit. The only stress was that my father was terminally ill in Illinois and I was living in NYC. Maybe that was the cause. I'll never know. I've had them twice since and for me it was the worst pain ever experienced. I literally feel your pain. Feel better soon. Sally
My new born son caught chickenpox from his 3 year old sister. Luckily, it was a mild attack. He came down with shingles at 18 months, though. Fortunately, it didn't seem to bother him much, but my doctor was surprised due to his age. He's now 27 and has been fine since.
Sometimes I think there is no rhyme or reason for shingles. Your son is the youngest person I've heard of with shingles. Kind regards, Sally
Thanks everyone for your comments. Due to them I contacted my specialist cll nurse less than an hour ago and I am now in hospital in an isolation room awaiting examination. Again thank you for without your information I would not have been prompted to act. Also I can't believe how quick the Nottingham Haematology Unit and my specialist nurse have reacted.
Hi folks final update (hopefully) on this. Seen consultant and prescribed oral morphine for pain and given another 5 days of aciclivor 400 mgs x 5 times a day.
Made phone call to nurse specialist at approximately 13.30 it's now 15.38 and I'm sat waiting for my prescription. Sometimes the system really works.
Great to hear of such prompt and helpful attention, Mick...
Wishing you well,
Paula
Good luck and I hope it goes away soon.
Feel better soon. Glad they were helpful right away. Sally
Wishing you the best Mick ... I had a bad attack last year thats left me with Neuralgia ... it's a right pain in the .... foot!
A couple of months ago I suspected another attack, it looked like spots under the skin and my hand felt like it had been stung with nettles, thankfully I had prompt attention from a nurse who put me on the Aciclivor 800mgs and it seems to have done the job.
Glad that you were in the right place and being attended to.
ygtgo
Shingles
Newly diagnosed with CLL
Alcohol consumption with CLL
Living with CLL
CLL / P17 with Mutation
