Recently I have been having severe pain and swelling in my wrists and fingers joints and it comes and goes. Travels to other places in my body. I have not had any treatment of any kind so wondering if anyone has experienced this as well.
My doctor called this leukemia arthritis - has anyone heard of the term, has had an experience with it, or treatment for it. It is very painful and this pain is now traveling to various spots in body specifically where the lymph nodes are.
Any comments would be welcome.
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BePositive22
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Not sure which came first the "chicken or the egg", like CLL or leukemia. I have had arthritis in several joints for several years before CLL was diagnosed. Couple of days ago the base joints on last four left toes hurt bad enough I was hobbling around. I soaked in Epsom salts for three days and pain moved. My fingers do not curl enough for me to make fists, but not painful unless I force them. Good news is with all the meds and supplements I have been taking something cleared up my psoriatic arthritis, which is gone, or I should say the psoriasis part is gone. Next week the arthritis pain will move to a different joint :). Blessings.
From all the healthy supplements I've been taking (I have to assume it is), I haven't really had attacks of my finger joint arthritis (or whatever it is -- possible psoriatic?). The last joints on a couple fingers. Knock-on-wood, hope not to now get an attack. I had this decades before diagnosis.
I have tried Tumeric but that doesn't really cut it. I have taken Bayer Back and Body pills (500mg) every 6-8 hours till pain subsides which is usually within a day and that did seem to kick it. Lately it has just been happening more often. Used to happen 2 a year but now every month. Prednisone is helping so hopefully I can get thru this hump and then be fine again for another 6 months
Possibly interesting, in the months before diagnosis I developed "frozen shoulder" (whatever that really is) and PCP sent me to worthless (for this) physical therapy, but it's now gone away on its own, not from PT. However, I've since researched and it seems that docs who confront "frozen shoulder" should consider leukemia as it is apparently a not-uncommon symptom.
Yes I have spasmodic pain, sometimes my hands, sometimes my knees or back, hips etc. I was treated for severe back pain for many years with nothing being given a name. I read about Migratory Arthritis and discussed this with my friend, a retired oncology senior CNS. She confirmed my suggestions about the pain being linked to the CLL. When I began treatment with Acalabrutinib, I was told that joint pain was normal and to take paracetamol. I also find a hot water bottle helps.
I will not let this disease get the better of me, I try to live to full. I garden and walk for miles.
Blood tests this morning so fingers crossed it will be ok.
Hi BePostive, the pattern of joint pain you describe sounds very much like mine, which was eventually diagnosed as Palindromic Rheumatism. You might find this link helpful:
I don't know whether it's connected with CLL .... the rheumatologist said it probably wasn't. But coincidentally (?) I experienced the first flare less than a year after my CLL diagnosis.
PR is a rare form of inflammatory arthritis and difficult to diagnose as it doesn't show up conclusively in blood tests. I was lucky that an osteopath with a special interest in arthritis first suggested it might be PR, so advised me to keep a detailed diary of the flares - dates, duration, which joints were affected and the severity, along with photos of the inflamed joints. I took this to my GP, who then referred me to rheumatology. They confirmed the PR diagnosis.
Anyway, I do hope you manage to get some help with this. I would add that turmeric doesn't touch it for me, but it's worth a try, we're all different 😉
I went down with and was diagnosed with Rheumatoid Arthritis in over 50 of my joints at about 2 years after my CLL Diagnosis. Rheumatologist convinced it is caused by/is side effect of CLL, it is not the first time she was seen this. Haematologist has her head buried in sand as usual and is not interested. It is controlled to a point with a ton of medication, including self injecting a chemotherapy agent weekly. There is a specific blood test for Rheumatoid Arthritis is worth asking for it, is surely worth narrowing down what it is and getting on top of it as treatments are different. Feel for you.
How can anyone tell apart the many reasons for arthritis? Can you be sure CLL is the cause? Maybe not? Do you eat stuff that promotes inflammation? Do you eat anti inflammatory foods? Maybe worth a look.
Over the decade + 6 months I’ve had CLL, trying to establish a possible link with arthritis (and muscle involvement) has been my greatest conundrum. I’ve never heard of ‘leukaemia arthritis’ as a term however.
I had transitory arthritis prior to my CLL dx but not significant enough to be disabling. However, I’ve become convinced from my personal research over this period that there’s a cyclical link between stress ~ inflammation ~ joint dysfunction and ultimately immune suppression. I can almost chart it for myself and in my case diabetes was thrown into the mix. Not unconnected in my view as it occurred 2 years into my CLL journey. Are food and lifestyle choices implicated in this systemic inflammation cascade? Very possibly. I remain convinced that stress and it’s system impact certainly is.
This research from Yale University explores the toxic interdependence and much of it seems to be linked to interleukin-6 (IL-6) levels. Everything I read seems to lead me to the involvement of IL-6 like a predictable ‘Who Done It!
Here, the researchers discovered IL-6 plays a fundamental role in mediating hypoglycemia. Essentially, this helps prepare the body for increases in glucose production necessary as fuel for our “fight or flight” response. The study explains, from an evolutionary perspective, “this adaptation comes at the cost of enhancing mortality to a subsequent inflammatory challenge.” My joints and muscles reacted in a fairly extreme way to Ibrutinib & Venetoclax (more the former) and I had to suspend Ibrutinb after 15 months. I’d developed severe arthralgia and myalgia which was being evidence by very elevated CK levels (a hormone that demonstrates muscle damage). I’m presently (hopefully) still uMRD but my joint issues trundle on painfully unabated. I now have spinal stenosis and if the NHS ever resume their function, I’m hoping for clinical/surgical intervention.
This from the Yale article is most illuminating;‘ A new Yale University-led study has solved a long-standing mystery of how acute stress seems to amplify inflammatory disease despite the fact many stress hormones actually suppress the immune system. The research reveals a particular immune cell is released by fat cells when an organism faces systemic stress. For several decades, a link between stress and inflammatory disease has been clear, with many chronic diseases obviously triggered into flare-ups by acute periods of stress. However, underlying this clear observation has been an unexplained paradox; hormones released by the body in the face of stress, such as cortisol and adrenaline, confer distinctly immunosuppressive effects, yet stress somehow still seems to stimulate inflammation.’
Is it possible to have CLL and not internalise stress? Could there be a link? There certainly appears to be a link between inflammation, the impact of IL-6 and auto-immune conditions and anxiety and depression;
‘When IL-6 was blocked in the mice the animals displayed significant reductions in signs of agitation, suggesting the immune mechanism may play a role in anxiety and depression.’
What I do know from a referral to Rheumatology is that the care and treatment for osteoarthritis and other non rheumatoid arthritic conditions has not progressed significantly since my first referral 15 yrs ago. Thank goodness CLL understanding hasn’t been on the same dismal trajectory!
what a timely post. I have been experiencing the same. My joints are stiff and achy. I just went to my Primary Care doc to be tested for Lyme and RA etc.
yes, I had it when I started treatment with Imbruvica. IT is a migrating pain, that moves across my body and may last a day or two before it is either gone or moved to a date different location. I have it with less intensity now and had accepted it as the price to pay for getting better on CLL.
After 10 years of CLL I have one bent finger, two that feel like they are starting to bend, sticky wrists, a punky hip and a weird knee. That’s the arthritis issue. BTW, my family has no history of arthritis. Now let’s talk about gout, which is often not considered enough while dealing with this disease. I would recommend starting to check uric acid levels immediately upon diagnosis. My feet glow with active sites under a PET scan, and I have had to have a large tophus removed from my right foot between toes. This causes very off numbing and insenstivity in my toes on both feet.
I had a similar problem with high Uric Acid. I eat a low carb diet with zero sugar, but my Uric acid was elevated until I started allopurinol last year. I suspected a link between my CLL and the elevated Uric acid.
There is a myriad of publications on arthritis, joint pain, connective tissue and inflammation with probable relationships to CLL and cause, however, the individual and their specific conditions, co-morbidities, medications etc... can make it very complex to diagnose and treat.
I had progressive debilitating joint pain and connective tissue inflammation after my cll diagnosis accompanied by extreme fatigue. My first oncologist told me that it was unrelated and sent me to a rheumatologist who treated me for rheumatoid arthritis. I was prescribed diclofenac, however, it would minimally influence pain on occasion during my cll progression. Interestingly, after I was treated with Obinutuzumab and Venetoclax, my arthritic symptoms subsided as did the fatigue. Although there was no clinical measure for the lessening symptoms after treatment, my new oncologist explained that the presence of cytokines during progressive cll is known to influence many undesirable conditions including joint pain and inflammation.
You having not been treated, the short answer is "Yes, leukemia can influence arthritis". The explanation and improved outcome unfortunately is now one of our primary ongoing objectives.
Wish I had the cure, I would definitely offer it free of charge. Hope you the best.
After reading through all the replies concerning arthritis and cll, I feel like I have answers my local oncologist didn't know or care to look into. My arthritis and gout started in earnest after my year on V+O, I'm coming up on 2 yrs post treatment. Currently taking allopurinol for gout, no flare-ups since starting treatment. Not a fan of taking more pills, but less of a fan of debilitating effects of gout. Currently have joint pain in fingers in both hands and migrating pain in ankle and knee. The shared experiences of those of us with cll provides answers that we can't seem to get from our medical providers. This a good thing, since it provides some answers to what we're experiencing on our journey with cll. In closing, wish I didn't have these ailments, but I'm happy to be alive and we can still live our best life...
Recent photo from an evening fishing trip. The opening is called a punch cloud..
Very interesting 🤔 I started experiencing knee pain and swelling about a year before I was diagnosed. It is a sharp stabbing deep pain that has doubled me over many times. Several doctors have looked at my knee over the years. I've had regular x-rays, MRI of the knee, tons of bloodwork, cortisone injections and even drained it. None of the doctor's I've ever seen seem to be close to a diagnosis. The pain and swelling comes and goes with no underlying causes that I have found thus far. It got really bad before I started Venteclax! I could barely get up the stairs to get into my home. A couple of times I've actually crawled up the stairs. The Venteclax made the pain and swelling go away and it hasn't come back yet. I was also prescribed diclofenac in the past and it did a number on my stomach so I had to stop. FYI for me, do not mix diclofenac and Ibrutinib this can cause explosive diarrhea! LoL 😂 it's funny now but definitely wasn't then when I got I C-Diff. I currently take Curcumin with Turmeric Extract. I kind of felt like they didn't believe me (even though they could see the swelling) when they couldn't pinpoint a diagnosis. Hopefully it will stay away for awhile. A knee brace did help a bit but not much. I am in shock that so many people in this group have had this issue. Once again I see that I am not the odd ball out. Sometimes we think we are all alone with weird wacky symptoms and suddenly we see we are not. Thank you for this post.
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