I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remission for about a year before relapse. Currently on Ibrutinib since 5 months now.
I had shingles on my left leg about 3 months ago. Was treated with Acyclovir. The sores and blisters have gone but the nerve pains( especially around my knees and thigh) have been hellish.
I have been on Co codamol/DF 118 and pregabalin since but the pains are still there.
Anyone with a useful info on what to do? Any idea when the pains will stop ?
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Oldscores1
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The literature states gabapentin is also effective in cases of post herpetic peripheral neuropathy. Perhaps trying that will help? Patients do react differently to different meds.
I have been taking Gabapentin since about 2010 for nerve pain and it really helps. If I lay off of the pills for a while the pain comes back so I know that it works for me. My doctor tried Lirica for this first and I had a bad reaction to my sight.
As a result of having peripheral neuropathy after a long ICU stay, I was prescribed magnesium & vitamin b & d
B vitamins are known to promote healthy nervous system function. Vitamins B-1, B-6, and B-12 have been found to be especially beneficial for treating neuropathy. Vitamin B-1 helps to reduce pain and inflammation and vitamin B-6 preserves the covering on nerve endings. B-12 is also essential for proper neurological function and a B-12 deficiency can actually cause neuropathy. B vitamins can be supplemented or can be found in eggs, seafood, fortified cereals, vegetables, low-fat dairy products, and poultry.
Nerves repair ( if they can repair and aren’t damaged beyond repair) at 1mm a day - so any form of help will take time.
I couldn’t feel my toes & tops of feet - whereas the soles of my feet were hyper sensitive - tiled floor felt like a pebble beach 18months later, I had full normal sensation
I’m only talking about what was explained to me - I hope it is helpful BUT we are all different - what’s good for the goose ain’t necessarily good for the gander - still it’s worth mentioning to your medical team.
I commenced using gabapentin as prescribed by my GP, then switched to pregabalin, when my CLL specialist said he found it worked better for his patients. I needed 150% of the recommended daily dose to mostly manage the pain. If you decide to try changing to gabapentin as SofiaDeo suggests, be aware that there is a seizure risk if you change your dose suddenly and there is no agreed best method to swap. The recommended options are to reduce one over a week while increasing the other, to wean off one over a week and then gradually increase the dose of the other (who could stand the pain? ) or do an immediate swap. I opted for the first approach.
As to how long before the postherpetic pain will end, some have to live with the pain for the rest of their lives. Some end up with permanent nerve damage (neuropathy), others have permanent sight and hearing loss. That's why I recommend the Shingrix vaccination to hopefully reduce these risks, which are significant and increase with age. cdc.gov/shingles/index.html
I'm still taking pregabalin daily after developing shingles back in July 2022. Thankfully I've been able to reduce my dose, because pregabalin suppressed my platelet and neutrophil production.
Thanks for your response. I have been having low neutrophils and platelets as well, could pregabalin be contributing ? I thought it was caused by Ibrutinib alone ? I had to suspend the pregabalin and pain meds as am not getting much relief from them
I had to be given a shot of Pegfilgrastim to boost the WBC/neutrophils. The platelet count from my results over the weekend is less than 100 even though am on Eltrombopag for two weeks plus now.
I had Shingles vacine 11years ago on the advice of my first CLL doctor. Now I have just been diagnosed with Shingles. My current CLL doctor never said a word about maybe updating and getting another shingles vaccine, I thought I was good, didnt even think about it. Once this over I'm going for the vaccine, they say you can have even if you have had shingles.
my wife has been living with nerve pain for over 25 years, not due to shingles but an operation on her spine which left her as an incomplete paraplegic. She has been on gabepentin since then but what has really helped her in the last few years has been cbd oil. She uses one without thc so there’s no risk of addiction.
I had shingles in 2017 just as I had finished FCR I tried all sorts , but have been on Gabapentin and find these have been the best . Shingles has raised its ugly head again lately with small rash and very tender with clothing touching it so upped my gabapentin and found a great help I hope you find something that helps you as the pain is awful .
I took pregabalin in a higher dose for a few months. But there is some adverse media comment around the drug at present because of the known side-effects around mental health.
My adult child has severe nerve pain due to a spinal syrinx. They are being followed by a pain clinic and have tried many different pain killers over the past 18 months. The pain never goes away, but it is being managed somewhat with a combination of pregabalin and ketamine troches. The ketamine was the most helpful by far of all the things tried (tramadol, low-dose naltrexone, buprenorphine patches, belbuca). It doesn't leave them feeling groggy at all.
I've had a similar case but with indeterminant test results (not enough fluid in the rash pustules for a good sample). Similar skin chafing on clothes and knee pain. I'm going the route of vitamin supplementation (haven't found a magnesium I can tolerate) and non surgical methods to increase circulation to nerves. Good luck to you whatever you try. I'm curious about eltrombopag with a platelet count near 100.
I have been suffering from PHN after shingles for over 2 years. I take the maximum dosages of pregabalin, duloxatine, codeine and paracetamol as well as a daily lidocaine patch. It takes the edge off the pain. I'm not sure which ones are effective. I haven't add any adverse side effects and I am almost at the end of my venetoclax / co-trimoxazole treatment and this has gone well.
I think a lot of the adverse media comment relates to the drug being used illegally rather than on prescription. The first time I took it and had a few beers people had massive heads and the clouds were purple but since then no impact when having a moderate drink !
I had shingles about a year ago. I took gabapentin and bathed in tub of warm water with one cup of Epson salts and cup of baking sodas. The baths resolved shingles eruptions in about a week and nerve pain was gone after one month. Blessings.
I have very dry skin & also like Dead Sea salts. They are high in magnesium like Epsom Salts, but have a few other minerals too. I like the psychological effect of using Dead Sea salt, it makes me feel more like I am at a spa hahaha!
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Off Ibrutinib for nearly 4 months and still OK
Watch and Wait Advice Needed please
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