I finished FCR about 9 weeks ago and was beginning to feel better and thinking about a return date for work when the dreaded shingles struck. I'd just stopped taking the antiviral meds about three weeks before. It's been 9 days now since the rash appeared and the pain has actually gotten worse in the past day or two. Is this normal? Anyone been in this position? I'd appreciate any information or advice.
Thanks
Hope you are back on the antivirals again. If not you need to get on them as soon as possible...
Zoster reactivations are controlled by CD4+ T cells, and treatments like FCR push these counts very low... allowing for reactivation...
Yes the pain will escalate... please go to emergency care if its bad...
Zoster... NYTimes
nytimes.com/health/guides/d...
Sorry you are going through this... shingles has had a great negative impact on my health...see a doc.
~chris
Thanks Chris. Hopefully it'll clear up soon. It's just so frustrating when you think you're on the mend.
Lorna
It isn't likely going to clear up by itself...
You need antivirals... otherwise you are in for a long time perhaps a lifetime of postherpatic neuralgia... nerve damage.
I have it everyday ...
en.m.wikipedia.org/wiki/Pos...
Please get to a doctor and get back on antiviral meds.
I took Aciclovir for 8 days but I still have quite a bit of pain. It's day 10 now. I'm terrified of developing nerve damage and so I was wondering if this was normal at day 10. Thanks for your advice. I'll make an appointment to see a doctor again on Monday.
Hi Kenn123, I hope you are on the mend soon!! In 2014, I was diagnosed with Shingles, on the back of my Throat!! Very painful. Lost 10lbs in 10 days, due to not being able to swallow Anything! It only lasted between 10 and 14 days, thank God! Even tho I was given the dx of CLL, in June, my oncologist figures I've had It since early 2012. The Gp was very surprised that I had it on my Throat, as it is always on the outside of the body. I will soon be getting the Shingrix vaccine.
Cindy
I had to take Aciclovir for 6 months as routine in my area.
They told me to stop after two months. I'm in Scotland. Can I ask where you are?
South West Uk
I finished BR April 2016. I took anti viral during treatment and continue to take it. I had a light case of shingles during treatment and took 800mg for 7 days. I think it was light since I had shingles shot before I knew I had CLL and was on anti viral twice a day.
Thanks for that. I'm just curious how long people took antivirals after treatment. I really wish I had continued to take it but I was told to stop.
I don't believe that antivirals provide any help for active disease beyond 8 days. However some, including myself, take it long term to prevent future outbreaks (I had shingles twice). My first case was mild - was on antivirals immediately and had little problem. My second case was much worse, even though I did start antivirals at the first of the rash. The worst of the pain lasted about 6 weeks and then gradually improved. The best relief I found was 2% lidocaine prescription patches (The over the counter ones have less lidocaine and don't stick). You can cut the patches up to fit over the whole area if it is large. Also, ice packs helped some as well as prescription pain pills that my doctor provided. I hope that everything works out for you.
Antivirals will work as long as there is viral replication... it feeds FAKE RNA into the cells to trick the virus, which the virus uses, but it fails to work, shutting down the process.
One of the best treatment overviews can be found at this link
academic.oup.com/cid/articl...
I'm currently on antivirals prophelactically and will remain on them as long as Zydelig (idelalisib) is working... hopefully years... 😜
Thank you.
Thanks for that.
MRD blood tests post FCR
V + O for R/R CLL post FCR
Cough post FCR
Status update 17 months post-FCR
