CLL and Peripheral Neuropathy

[Emerfly]

Has anyone with on this group been diagnosed with Peripheral Neuropathy? I’m in agony & my dr is going to refer me to a Neurologist . She was curious to know if it’s CLL related or a Long Covid related ...damned if I know ! So just wondering if anyone here knows . Any thoughts or info much appreciated . All the best . Emer

[Poodle2]

I'm not a doctor but I had covid, still have long covid and I do suspect that I have some peripheral neuropathy too. I do feel like it's slowly getting better but it's been painful, uncomfortable and with my hands and fingers - I have spilled so many cups of coffee and tea (they just drop out of my hands!) that I refuse to believe it's just pure clumsiness...so my bet is on Covid...

[Emerfly in reply to Poodle2]

My pain is everywhere except my lower legs and feet ! OTC painkillers not helping at all . I am reading that it can be a long Covid symptom but my daughter (research nerd ) came across a very interesting study where 3% of the 860 CLL participants in the University of Padova (Padua , Italy) study had Peripheral neuropathy . So she tells me , I have yet to read it .

[Emerfly]

Thank you Groetjes but I’m guessing he/she is not in Ireland .

[fapumpkin]

I wonder what your treatment status is? I was diagnosed with Peripheral Neuropathy, freezing feet, falling over quite a lot, can't feel my feet very well, I no longer have ticklish soles, in August 2019, after numerous falls! I am coming up to my fifth year of being treated with Ibrutinib, and apparently there is some indication that it can contribute/cause peripheral neuropathy? I have a phone consultation a week tomorrow and I will be raising the issue : is it caused by the ibrutinib, will it get worse/affect my hands, can it be 'reversed", are there any treatment options? If the haematologist feels that this isn't something they can address I will ask for a neuro consult.

I am particularly concerned for 2 key reasons. 1) I opted for ibrutinib rather than FCR because I was concerned about peripheral neuropathy as I rely on the dexterity of my hands for my income as I work fine crochet , 2) I have 11 compressed fracture vertebrae/severe osteoporosis and the treatment puts me at risk of femur and hip fractures so increased risk of falls is not a good combination.

[Emerfly in reply to fapumpkin]

Hi Fapumpkin I am on W&W since Dec 2017. The only med I’m on is for shingles and herpes , a prophylactic antiviral . I have seen in some of my readings that it’s more common in CLL patients in active treatment . There are treatments but I do not know about treatment while you are taking Ibrutinib . I’d ask to see a neurologist if I were you .

Im hoping I won’t have to wait too long . Ireland’s health care system isn’t functioning very well . The waiting lists have been a decades old problem but with Covid on top of a sluggish system it’s pretty dire at the moment . Vaccine roll out very slow , hospitals coping with Covid cases but at the expense of all other conditions .

[janvog in reply to Emerfly]

I got the two SHINGRIX vaccinations which give 90% protection against shingles. The insurance paid almost all. ( But I still keep a emergency dose of Valaciclovir - just in case.) I had no reactions to the SHINGRIX. I am 86.

[SofiaDeo in reply to janvog]

The valacyclovir recommendation (if you happen to prodrome) is:

mayoclinic.org/drugs-supple...

This info was last update Feb 1, 2021. It's the protocol I follow, and sometimes I prodrome & can catch it before there's a full blown shingles outbreak.

[janvog in reply to SofiaDeo]

I now got the two shot Shingrix vaccination which offers 90% protection. I am 86 and had no bad reactions to Shingrix. I paid $ 8 deductible each time. The insurance paid $ 100+ each time. I got the shots at the supermarket pharmacy. No prior appointment necessary. I needed no prescription from a doctor. But my hematologist agreed that I take it. I got CLL under control with Imbruvica. While we are at it: I recently started with both organic unpasteurized apple cider and Co-Enzyme Q10 - and now my diastolic BP went from the usual moderate hypertension 125-135 to textbook normal below 120. My hematologist agreed to both. Both the vinegar and the Q10 are known to lower bp.

[lankisterguy Volunteer]

Hi Emerfly,

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This link will take you to the 110 times peripheral neuropathy was mentioned in previous posts or replies. healthunlocked.com/cllsuppo...

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You can also find some of those on this page in the box labeled: Related Posts

*Peripheral Neuropathy and CLL healthunlocked.com/cllsuppo...

*CLL, Ibrutinib & Peripheral Neuropathy healthunlocked.com/cllsuppo...

*CLL and possible peripheral neuropathy? healthunlocked.com/cllsuppo...

*Peripheral Neuropathy healthunlocked.com/cllsuppo...

*Peripheral Neuropathy healthunlocked.com/cllsuppo...

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Len

[Emerfly in reply to lankisterguy]

Thanks a millionLen ...110 posts 🥺. It’s late evening here so will check check those out tomorrow .

[Smith123456]

nerve pain is helped by drugs like gabapentin-brand name Neurontin

[blowinginthewind in reply to Smith123456]

Yes, I have peripheral neuropathy due to spinal nerve dame unrelated to CLL - I had an accident 18 years ago. I take a low dose of amitryptiline, which I may have spelt wrong. It helps a lot. However if you have lymph nodes raised near spinal nerves, that could cause it. But a neurologist will know that I hope.

[Hidden]

Hi Emerfly,

This is possibly an unhelpful comment because my experience of polyneuropathy is the opposite of yours. Anyway, here goes.

The deterioration of the nerves, mainly in my lower body, has led to the lack of feeling. I've had in both feet and calves for years "burning feet" - an amorphous tingling, but not pain. Similarly I have had cuts and burns in these areas which were pointed out to me, because I wasn't aware that I had sustained them because I had no warning or continuing pain. Because my legs do not work as well I have fallen a few times. Falling was painful in the areas that I felt it and led to bruising. Because I am not so well-coordinated I cannot access muscle strength, so getting up from the floor is difficult.

I did have a periodic pain from joint inflammation, probably caused by the reintroduction of ibrutinib. It could have been the onset of rheumatism but it gradually disappeared.

I hope you find a solution for what is happening to you.

Best wishes and good health,

Peter

[chillsome]

Hi, I have also suffered from peripheral neuropathy and still am but luckily to a lesser extent. It started after I had been on Ibrutinib for two months (back in December 2019) and was in hospital during my weekly ramp up of Venetoclax. So I assumed it was the Venetoclax but it could just as easily have been the Ibrutinib. It is particularly annoying at nights when my feet feel like I am standing on ice (stabbing, sharp pain) even when they are perfectly warm to touch. I was really alarmed at first as read up about it and saw that it is hard to reverse. However it seems to have got better like many of my side effects and I feel I can trick myself into feeling less pain by having hot water bottles and wearing bed socks (which I still need to), even although I know that they are not really cold. There are pills you can take (maybe Gabapentin?) that help with nerve pain but you need to be on it for a while before it becomes effective, I think, and I was rather manic and didn't want to mask the pain as wanted to keep tabs on how bad it was in case it was causing permanent nerve damage that might affect my mobility long term. I was probably lucky and didn't get it too badly as it was less bad in my hands. I also noticed my right foot/hand was generally worse than the other side which was weird. Do hope you find a way of making it better.

[Williem233]

Hi Emerfly,

I have been diagnosed with Peripheral Neuropathy within the past year following tests with a specialist consultant in Glasgow. The testing came about when my CLL consultant suggested my medication could be causing the problem, Ibrutinib which I had successfully been on for 3 years. Following the diagnosis I have now just recently changed my medication to Venetoclax as advised by both my specialists. My Neuropathy is mainly a problem with my lower legs and a tightness feeling in both feet, especially at night, I don’t currently require any pain relief. I still have feelings in my feet, both nerve type and tickling, at the moment this Covid crises is slowing appointments at hospitals but I expect further investigation in the coming months. Luckily I have managed to avoid catching Covid and now having had the vaccine gives me hope for the future. I hope this helps you and good luck with your investigation of your condition.

[Sepsur]

Funnily enough I just posted this on another forum - so not all bits are relevant

“Critical illness neuropathy is a disease of peripheral nerves, occurring as a complication of severe trauma or infection (critical illness). It develops while patients are in the intensive care unit and it is typically diagnosed by limb weakness and unexplained difficulty in weaning from mechanical ventilation. “

My extremities were weak & numb. I experienced pins & needles, severe cramping & acute joint pain. My motor skills and sensory perceptions were impaired - I’d forget I was holding something and just drop it.

There is nothing like trying to shed light on a phenomenon that isn’t fully understood yet. If you are anything like me, the legacies of ICU go on & on, not that I’m complaining mind, I’m alive & kicking.

No-one really explained about neuropathy & myopathy or the difference between the two, the first is nerve damage & the second is skeletal muscle weakness & damage.

If you had Sepsis, ARDS, multiple organ failure, diabetes or Covid - you’re more likely to have experienced neuropathy - the toxic effects of the disease appear to destroy nerve fibres, whereas the drugs ( usually steroids) used to treat you & put you into a state of paralysis so that you can be proned or vented, appear eat away the skeletal muscle.

Prolonged bed rest, medication & infection make a poor cocktail.

I don’t think the mechanics behind both have been full realised although it has been suggested that hormone imbalances, body deficiencies & hyperglycaemia play a role.

So what can be done since there is no specific medical treatment ( I’ve no desire to take any more drugs than I have to)

Careful exercise & getting mobile is crucial, improving your diet. Less use of steroids, taking Vitamen E and other anti-oxidant therapies, growth hormones, testosterone derivatives ( different type of steroid), management of hyperglycaemia and immunoglobulin treatments. I had no idea that the infusions I was having for my leukaemia were reducing the neuropathy - I’d never made the connection.

My neuropathy & myopathy slowly improved over time, I was told nerve damage repairs at a 1mm a day. I started taking Vit D & magnesium sulphate that cut down the cramping and excruciating joint pain, sometimes it felt like my knees were set on fire. When I left ICU I couldn’t feel my ankles or the tops of my feet, my hands were a mess - whilst I have weakness in both - I have full use.

ncbi.nlm.nih.gov/pmc/articl...

[Aakashneem]

Yes. I have peripheral neuropathy. I feel it in my soles . My CLL doctor and neurologist have seen it but did not give much importance.

Vineet

[claree_ford]

Hi, I am still in w&w - no treatment. Diagnosed nearly four years ago. About three years ago I realised I had lost nearly all feeling in my feet and shins, also no knee jerk reflex. Loads of (inconclusive) tests, the “experts “ came to the conclusion that as they could find no cause it was “probably” related to cll. Since then the loss of feeling has worsened but not moved above my knees. Only occasional pins and needles, twitches or pain (very lucky I know), sometimes I discover that my feet are cold and I haven’t noticed. I have to be careful with balance if my eyes are shut or I am distracted. No one seems bothered or interested in it - “long term and fairly stable”. I mostly forget it but sometimes worry about it moving to my hands. Apparently it’s “known but rare in untreated cll”. Oh well.

I do hope your horrible pains are fleeting and go away soon.