Myalgia and arthralgia

[Beezerdmd]

Anyone experience these issues 6 months after starting Ibrutinib?

[Newdawn Administrator]

Most certainly have Beezerdmd and then some! Is it becoming problematic for you?

Welcome to the site incidentally, I see it’s your first post. You would be advised to restrict your post to the community if your avatar name is or resembles your actual name.

Best wishes,

Newdawn

[stunned]

You bet i did....

A few weeks after starting Ibrutinib, i went to bed absolutely fine,, woke up in excruciating pain in my left wrist,

unable to move it and it was hot, swollen and incredibly painful to touch. Walk in centre took xrays and said they thought is was broke and had a spur. They fitted a backslab for protection and made me an appointment at the fracture clinic.

Visit to the fracture clinic proved no breaks but they said it could arthralgia. They tried to fit a brace, a contraption that fits round your hand, has a metel rod to stop you bending it and fastened with velcro..

Ouch, far to painful so i was fitted with a new backslab for 6 weeks. The pain was unbearable and luckily i have not experienced anything like it since.

Anne

[Newdawn Administrator in reply to stunned]

Like you Anne, I can’t quite believe how random, indiscriminate and utterly excruciating arthralgia pain can be on Ibrutinib. I’m suffering badly at present and have for the duration of my treatment. Obviously the pre-existing arthritis won’t be helping compounded by the inability to take anti-inflammatories.

Last night I developed knee pain which by late evening rendered me virtually immobile. Even Oramorph couldn’t dull the pain all night and my knee felt broken.

This happens unexpectedly and pretty rapidly and it’s like a lucky bag of agony!

I’m afraid for some of us, arthralgia is a reality on Ibrutinib and it can be pretty brutal in its ferocity.

Newdawn

[LynnB1947 in reply to Newdawn]

I had sudden onslaught of knee pain about 2 months ago. I was afraid I was going to need knee replacement but I also thought, "This could be the ibrutinib." Sure enough about 3 or 4 days later. My knee was just fine. It was most likely the ibrutinib.

[Hidden]

My existing arthritis and polymyalgia rheumatica has certainly got worse. The Oncologist referred me to a rheumatologist who has prescribed three new medications which have certainly helped.

[Newdawn Administrator in reply to Hidden]

Hi Madlily,

Can I enquire whether the three new meds which are helping are steroid based or anti-inflammatories? I’m genuinely interested as to what can be taken with Ibrutinib (obviously under medical supervision).

Regards,

Newdawn

[Hidden in reply to Newdawn]

Hi,

I have tablets consisting of condroitin and glucosamin which reduces inflamation. I have Allopurinol and a cream that consists of condroitin and hilauronic acid.

[Newdawn Administrator in reply to Hidden]

Thanks Madlily,

Apart from the Allopurinol, I can buy the other meds in the health food shop. Hope they are effective for you.

Newdawn

[Redlion]

Welcome to the forum. Myalgia, arthralgia and tendonitis are all common side effects of Ibrutinib treatment. For those who experience one or more of these many will find that this is a passing phase in the treatment but there are some for whom it is not and it can become extremely wearing and limiting over time, never knowing from one day to the next whether or not your are going to be blighted by an excruciating pain. Once my blood numbers came into normal range I reduced dosed and found that moving from 420mg to 280mg (3 to 2 capsules) helped a little but moving to 140mg helped a great deal and almost eliminated the issue. I now have the blessing of my consultant for this going forward, and it has had no negative effects on my blood results over the last 6 months. Ibrutinib is known to have off target effects so it may be that as the amount of CLL B-cells reduce towards normal maintaining the full dose allows an excess of Ibrutinib which then can amplify those off target effects. I hasten to add that I have no evidence to support this theory. Good luck.

[Dahlia7 in reply to Redlion]

I agree completely. So much drug to hit finite number of targets( B cells and off target sites). So what happens when there aren’t as many B cells to attach to? More off target sites are bound by Ibrutinib and hence more off target side effects. Makes perfect sense to me.