Joint pain

Anyone else have swollen fingers and hands?

How do you treat it besides ice packs and topical gel?

Thanks.

[Cllcanada Top Poster CURE Hero]

Not much to go on...have you seen your doctor about this? Imbruvica (ibrutinib) does effect some this way, certainly need to see your hemaetologist.

~chris 🇨🇦

[Hidden in reply to Cllcanada]

Yes it’s apparently a side affect of Imbrutib, which I started on Dec. 19.

[cajunjeff in reply to Hidden]

Ibrutinib can cause joint pain, I have had some. To my understanding though, joint pain from ibrutinib is treated the same as joint pain from any other cause.

One difference might be that certain drugs like Advil might be contraindicated. My doctor told me i can take an Advil now and then. It depends on what risk factors we have for bleeding.

Ice and gel are good ideas. You might also try a massage therapist or chiropractor. Some of their treatments you can do on your own once you learn them.

Acupuncture is another possibility. I know a number of mainstream doctors who think acupuncture is legit. I asked my physiatrist about acupuncture, fully expecting him to say it’s a sham. He rather told me it can be very effective for some and that there is a reason it’s been around several thousand years.

If the joint pain gets unbearable, consider discussing a reduction in your ibrutinib dose with your doctor.

[Hidden in reply to cajunjeff]

Thanks. My doc said Tylenol is ok to take for joint pain. I’ll try acupuncture as well.

[livinglifewell in reply to Hidden]

Acupuncture is mighty effective too, I agree.

[AussieNeil Administrator in reply to livinglifewell]

Acupuncture has solidly been shown to have no further effect than a placebo. However the use of proven remedies such as TENS machine stimulation via acupuncture needles has been confusingly associated with just the use of acupuncture.

sciencebasedmedicine.org/ac...

Neil

[livinglifewell in reply to AussieNeil]

Chinese Medicine existed centuries before Western medicine.

[AussieNeil Administrator in reply to livinglifewell]

As have cancer and joint pain. How long something has been used doesn’t correlate with effectiveness. Blood letting was practiced for centuries too...

[livinglifewell in reply to AussieNeil]

Yes, Neil, acupuncture and Chinese Medicine are still being used while bloodletting is not. Just as many "standard" cancer therapies are no longer offered and will one day be looked back on as barbaric. CM marches on. I don't think they can be compared because their models are very different. I'm not saying one is better or worse than the other, but equally important for their own certain characteristics, practices, and outcomes.

[AussieNeil Administrator in reply to livinglifewell]

Ah, but blood letting is still being done, some times for evidence based reasons (including those with CLL who have built up too much iron because they needed red blood transfusions) but mostly because it has been done for centuries, just like Traditional Chinese Medicine: nationalgeographic.com/scie...

You need a scientific approach to winnowing out what TCM practices improve the patient outcome or you risk this:

forbes.com/sites/stevensalz...

TCM in general doesn't have evidence of effectiveness and does come with risks - up to and including serious side effects and even death:

nccih.nih.gov/health/whatis...

"Western" medicine includes some procedures that may not help patients or even do more harm than good, but blood letting is no longer generally practiced thanks to the adoption of an evidence based approach:

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

That's why CLL specialists no longer recommend CT scans other than where there is a specific need for one.

"The best chance for your survival if you get cancer is to get scientifically proven treatment from medical professionals" or you face much higher odds of dying: iflscience.com/health-and-m...

Neil

[W00dfin]

The Salonpas pain patches are helpful for me. I have low platelets and understand aspirin is contraindicated but my monthly platelets lab count stayed the same with or without Salonpas.

[Hidden in reply to W00dfin]

W00dfin, thanks!

[Lola69]

I think ice pack is too cold! if it’s very swollen u need a doctor

[Hidden]

Thanks Lola69. The ice packs feel good because they alleviate the pain.

[livinglifewell]

I have awful joint pain, not in my hands though, my pain is in the hips, knees, ankles, and back. Since my first exposure to rituximab the hip pain began, and with imbruvica the other joints chimed in. I am led to believe it is an inflammatory response to either the disease, its treatment, or the combination. CBD oil helps. Low-dose naltrexone worked for a while but that prevented pain relief from oxycodone used for flare-ups.

[Hidden in reply to livinglifewell]

livinglifewell, what online store do you recommend to buy CBD oil? Thanks.

[livinglifewell in reply to Hidden]

I purchase it from either the local cannabis dispensary if it is blended with THC or the local health food store as a single agent. I swear by a product called "Allay" - a marijauna infused lotion, extra strength purchased at the local dispensary for specific spot pain relief. It's manufactured by New England Treatment Access, Franklin, Massachusetts.

[Hidden in reply to livinglifewell]

Thanks!

[Hidden in reply to livinglifewell]

livinglifewell, have you tried Difoclenac sodium, brand name, Voltaren? Wondering how Allay compares.

[livinglifewell in reply to Hidden]

No, Matt, I haven't tried that. I have tried Arnica Montana gel which is effective too.

[OVERCOMMER]

Matt with swollen fingers: THIS one is easy; Turmeric pills or spice organic with a dash of pepper to absorb ......or the pills 2 times a day

as it says on the jar. At night I wear a rubber tight fitting glove with

organic caster oil and a drop of an essential oil massaged in; lavender, or

clove, or frankincense, or bergamont or just the caster oil that removes

scar tissue and adhesion in my research. Edward Casy was my first study doctor here in the USA online. Avoid all sugar, dairy and wheat.

We love all the substitutes here better; ie manuka honey, stevia, etc

[Hidden in reply to OVERCOMMER]

OVERCOMMER, will try Turmeric, thank you.

[cllady01 Former Volunteer]

Matt, please check with your Dr. before you take anything-

cllsociety.org/2017/09/thin...

"Ibrutinib has a mild anti-coagulant effect essentially equivalent to 325mg of Aspirin. It is important that you provide a complete list of medications that includes any nutritional supplements or over-the-counter medications to your provider. Your provider or the clinical pharmacist assigned to your clinic will review your medication history and make recommendations on items to reduce or eliminate. Some common medications to avoid without provider approval are, aspirin or Non-Steroidal Anti-Inflammatory agents such as ibuprofen, naproxen, or diclofenac; and anti-platelet agents. In addition several herbal products can enhance the anti-coagulant properties of ibrutinib including Omega-3 Fatty Acids (Fish-Oil), Flaxseed Oil, Vitamin E, and Curcumin/Tumeric. Of course if you are on any anticoagulant or antiplatelet therapy your medical team may need to adjust or eliminate your current therapy."

[Smakwater]

Ask your Oncologist if it is permissible to use Diclofenac cream which is an NSAID. I used Diclofenac regularly both oral and cream with acceptable results prior to being treated for CLL. However, it can effect kidney function and has reactive possibilities with other drugs. Now that I have been treated for CLL, I rarely need it and the cream has worked good enough.

JM

[Hidden in reply to Smakwater]

Smakwater, I’m using Difclenac gel and it helps though I think I’ve packs help more. Thanks.

[Smakwater in reply to Hidden]

The oral is more affective, but it is also more reactive with other drugs and the kidneys.

I hope you find something that works. I know that the joint and connective tissue pain is a huge challenge in the effort to stay healthy and active so that one can overcome this disease.

[Hidden in reply to Smakwater]

My joint pain is only once a month for no more than three days. On the other hand, the fatigue is almost daily.

[Smakwater in reply to Hidden]

I have been treated recently with Gazyva and Venetoclax. I now consider my joint issues an aggravation rather than debilitating, and I have no activity unrelated fatigue.

[Marie-54]

Matt I hate drugs of any kind and only take them as a last resort. For my swollen arthritic fingers and hands, nothing has ever been as effective as washing a load of dishes in hot water. The relief is immediate and lasts for quite a while. My husband thinks it is hilarious that I would rather do the dishes than put them in the dishwasher, but I do find it just that effective.

[Hidden]

I prefer the dishwasher but I’ll try that! Thanks.

[Lenny123]

Fellow sufferer, get ferocious pain, redness, tenderness. worse initially, comes out of nowhere. Less frequent with time.

In my case this is definitely tenosynovitis, the joint itself is pain free, there is tenderness over the tendon, almost always ex tensor tendon. Hand and knees, feet, affected mostly. tends to go way after a few days.

Ice packs, cold for 20 mins 3 times daily. Rest, lots of water. small doses of ibuprofen, about 400 to 600 mg as soon as pain starts. These seem to work.

Several hanging questions: Why does this occur? Is it a gouty reaction, eg. to elevated urea levels due to destruction of cancer cells? Is it caused by cll, or by Ibrutanib or other medication? Is the " joint pain" described by cllers the same thing, or are we talking apples and oranges?

[Jewel2]

My ring finger swelled to the point that I had to have my wedding rings cut off. Also, can not make fists - first joints won’t bend.

[SouthFloridaLady]

I take a Claritin every morning with my Imbruvica; I believe helps me a lot.