CLL Support

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IBRUTINIB AND HIP PAIN: First, I want to say that since Ibrutinib is such

a miraculous drug, many people want to stay on it. The hip pain needs work throughout the day,

but can be mitigated or eliminated. The main muscles that cause pain around the hips

are the quadratus Lumborum and the gluteal muscles-there are other

muscles involved as well. These two muscles are loaded with

trigger points and refer to each, and spill over down the leg to the knee and ankle. Some

patients will even get a diagnosis of sciatica, but most of these

pains are from trigger points and a lot can be done for this pain. There are also

muscles that parallel the length of the spine-the longissimus and

the iliocostallis on each side and they would also need work in some cases.

You will be able to do many things on your own by searching on-line

for yoga postures, muscle stretching, and myofascial stretching exercises for back and hip pain.

You can also learn these from an LMT or other practitioners that are certified in trigger

point work and myofascial work. Also an acupuncturist can show you points to push

that will help with hip and back pain-if you can afford seeing a practitioner. Either way

stretches and yoga postures can be done for short periods throughout the day as needed. There

are so many points on the bladder meridian for back pain, as you push them they are acupressure

points. Not just for back pain, but pain radiating down the leg as well.

Magnesium citrate 500 mgs 2x daily internally and magnesium spray on the painful area to relax muscles can be

helpful as well as magnesium malate internally, which can be taken in higher doses since the malate (malic acid)

will not cause loose stools like magnesium. Berries, apricots, and apples contain malic acid.

More oxygenation in your tissues can help to lessen pain because as muscles spasm (splint)

oxygen decreases, which causes more tightening of the muscle causing more pain. Covalen-M, for example, is given to people with fibromyalgia (less oxygen in muscle tissue), so it is useful for muscle pain by

increasing oxygen in the tissue. The mushroom Cordyceps increase blood oxygen levels, which

are good for CLL patients in general.

A doctor, ARNP, and a DPT trained in how to do dry needling for pain can be very helpful as it gets

the tissue to relax. Also neural therapy done by a trained doctor or ARNP is good therapy for pain. It seems like

this treatment just kills pain with an anesthetic, but it helps the tissue to stop sending pain signals as well. Cayenne pepper will also interfere with substance "P" to stop sending pain signals, since it thins the blood - check with your doctor.

Ginger and curcumin, and many formulas like Curaphen by Euromedica are good anti-inflammatory products for pain, since inflammation causes pain they can be useful. You would need to get healthcare provider quality to really be effective. There are external creams like Mineralgia (I find this one exceptional), Doctor Schulz - Deep Tissue Rub, level 4 Pain Relief Ointment and many more creams, again provider quality. Work with your healthcare provider. Also any herb or supplement can interfere with drugs or specific conditions that you may have makes it important to check with your doctor. If and many doctors are not knowledgeable about supplements find and ND or Clinical Nutritionist that can help you.

Since inflammation causes pain, eliminating sugar and junk food that promote inflammation can be helpful. Also you can look up foods that lower inflammation. Always check with your Oncologist or other healthcare provider. If you are getting good results with Ibrutinib and have hip and lower back pain, this information may

allow you to stay on the drug.

Food sensitivities or allergies should also be considered with exacerbating side effects. There are also supplements that can reduce side effects of chemotherapy-again check with your doctor.

I have had such great results with Ibrutinib and from so many stories so have

so many other people as well. My oncologist told me that a patient went off Ibrutinib for a year and his blood results were good during that time, as the CLL came back, the patient went back on. Why not for 2 years or even more, so I feel is is worth trying to mitigate the side effects.

10 Replies

Thank you so much for this very informative explanation of helpful advice. I have been on the Flair Trial since Jan 2018 and after 8 weeks started with muscle pain which is still ongoing. My bloods results are good so I want to be able to continue on Ibrutinib but the pain is as debilitating and I cannot sleep at night. Muscle spasms and cramps are active every time I either stretch out or even move my legs. I also gave this happen in my toes, hands, arms and now ribs.My research team have noted this side effect all the way through and my magnesium levels etc are always checked. The test results always come back within the acceptable markers. I have highlighted many times that perhaps I need to take additional Magnesium supplement as CLL patients on Ibrutinib may need a higher registration of Magnesium It’s not been discounted totally and is being suggested to my Oncologist. Your trigger points that you explain fit exactly with describing my pain process from the hip downwards. I was diagnosed with acute Sciatica in December 2019 and after an MRI scan they found a slight bulging disc in the 5th vertebra alongside spinal age related degeneration. However considering that I started these problems in January 2018 I am convinced that all this is related. I do not feel any pain in my lower back only from the hip right down to my ankle. The muscle spasms in my toes, hands and arms lock into immovable contortions. I have been applying Bio Freeze Gel to relieve the cramps. Thank you again for post . Sandra

Thank you for your reply, yes Bio Freeze can help a lot, I had so much info that I forgot many points and will do a follow up post. There is a micro surgery for the disc to shave off some so it is not pushing on the nerve. Also a good body worker or chiropractor can help show you stretches and positions that may allow the disc to recede enough to stop hitting the nerve.

I have been on Ibrutinib since 2010 and have had no side effects or symptoms since the first six to ten months other than AF which continues today. My bloods have been normal also since the first six months when, I suppose, things were settling down to the new drug but I had joint pain and muscle cramps until then after which they went away.

That sound great.

Thanks, a potentially useful resource for all of us with creaking joints etc. Do I understand that your knowledge proceeds from first hand experience?

First hand experience and being a holistic health practitioner.

Would agree on exercise for back hip relief I have had lower back pain on off for most of the 4 years I have been on inbrutinib , magnesium definitely helps and was the first tip I got in management of aches with inbrutinib Recently ad I have been off wot most of the last year shielding so sitting on my arse far to much I have had stiff back etc and found back stretcher I got online very good plus back stretching daily and a good 20 mins on my accupuntre matt really good so I would agree with most of what you have said

Thank you so much !!! I hope a lot of CLLers read all your good information here. I have just finished up my

Ibrutinib/Venetoclax trial. I don’t know how I could have arrived at this point without keeping my body in muscular balance... the pool workouts,the stretching and strengthening from Pilates and Gyrotonic and the light cardio. really saved me from the bad body pain. The morning after my first Ibrutinib dose I woke with my my knees screaming Every step felt like someone was taking a hammer to them. .. I knew then I better get busy and fight this

I also did the foods to fight inflammation plus the magnesium and curcumin etc

It all helped. Wish I could have found the secret to curb my horrible mouth sores

I tried everything ... some things helped but they never seemed to go away

The next morning after the last day of my drugs in the trial I became mouth sore FREE

and have never had one since 🎉

Again thanks for all that valuable information. I’m so glad I found remedies to help me through these last 2 years I. know Ibrutinib has the bad side effects for some people BUT

I am grateful for the trial grateful for my results and for learning so much from Healthunlocked to get me through


I should add, when it comes to hip pain that I had been suffering with hip pain for ten years and my haemo team felt sorry for me attending my , at that time, fortnightly blood tests on two crutches in severe pain and having driven from the Kent coast so when my bloods were normal they arranged for a hip replacement and then another one two years after. The best thing I could have done, no pain and I feel like thirty again.

That is such a blessing. As we age, the more we realize that health is wealth. May you stay healthy and pain free.

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