15th day on Calquence muscle pain.

[helenolton]

On my 15 day of Calquence, went for a walk and had a hard time walking. I think this drug is effecting my muscles in my legs.

[AussieNeil Administrator]

Good on you for exercising during your treatment. Were your symptoms any better after your walk? Joint and muscle problems (pain) is low down on the list of reported side effects, but that's hardly reassuring when you are experiencing it. If the muscle problems are from the Calquence, they should improve over time. Do report this to your PCP doctor and trial specialist. It's unlikely to be due to your high lymphocyte count. Other members have had twice your count.

I used to walk to my pathology lab and noticed how my walk became quicker and easier as my CLL was gradually vanquished and my anaemia consequently faded away. I hope you find the same.

Neil

[helenolton in reply to AussieNeil]

Hello.....My symptoms have not improved after walking. These symptoms come right after I take the Calquence,. As soon as I take the pill, I start having the ringing in my ears and pain in the muscles of both arms and both knees. Last for about 4 hours. Although, my ALC is coming down slowly.

[AussieNeil Administrator in reply to helenolton]

You've mentioned in earlier posts about being frightened of starting treatment and looking for natural ways to deal with your CLL. When you say you get these symptoms "right after," or "as soon as I take the pill" given the capsules and pills have an enteric coating which has to first dissolve and it takes at least half an hour for the Calquence to build to the peak serum blood level, have you considered that your reaction is perhaps due to your fear of this treatment and not due to the treatment itself? I've certainly experienced ringing in my ears in response to things that frighten me and even feelings of muscle weakness. Calquence is a second generation BTKi drug, designed to be highly selective for CLL cells and avoid other body cells as much as possible.

Neil

[helenolton in reply to AussieNeil]

I get this reaction a half hour to an hour after taking Calquence. It last for three to four hours, When I take the next dose the same thing happens. I react to a lot of drugs. I have not been on any medicine for years. I think my body is trying to get used to this drug. Many years ago I was put in the hospital for allergies for 21 days, and the Dr. told me I was allergic to Chemicals. They had me on a drug for allergies for three months, I was rushed to the hospital many times because of this drug. They finally took me off the drug and the Dr. said only one percent of the people are allergic to this allergy medicine. When I had the bone marrow test , I had to have someone stay with me for four days, because the reaction was so bad. So I know it is not fear. I want to take this medicine, but I am sorry some people have more reactions than others. I am only 97 pds., and I wonder if maybe thin people have more of a reaction compared to another person who maybe weights 150 pds. Not sure if they did the Clinical Trial on their weight. Thank you Aussie

[AussieNeil Administrator in reply to helenolton]

Thanks for clarifying that you get the reaction half an hour to an hour after taking Calquence, not right away. That certainly fits with Calquence being responsible.

I commend you for wanting to take this medicine, given your prior experiences. Your concern about your relatively low weight and the full dose needing to cover someone much heavier than you is a concern shared by many. I recommend that you ask your specialist about dropping down to half dose when your health has improved and your blood counts are near normal. If you can sleep through this reaction, perhaps you can take your Calquence just before you go to sleep and thereby avoid this particular side effect?

It's good to hear that you think your body is trying to get used to Calquence. It's what's termed a small molecule organic compound drug, so it's closer to natural than the older chemo drugs.

Neil

[helenolton in reply to AussieNeil]

Thank Aussie for all your help.

[Sushibruno in reply to helenolton]

I get these same exact symptoms. Are yours any better? I've been on this med for 1 month today.

[country76]

I noticed muscle issues when taking Ibrutinib to the point I had a hard time walking some days and gave up my long walks.

Since taking Calquence it has eased up quite a bit to the point I can walk several miles a day.

I sometimes thought it was a fluid retention issue however never could find out what causes it. My thigh muscles seem to feel tired or tight sometimes and walking loosened them up.

I have a history of walking alot and dancing so I had very good thigh muscles.

[helenolton in reply to country76]

I agree with you that's how I feel.

[flipperj]

I had lots of muscle pain and stiffness on Calquence. It didn’t get better over time, actually got much worse after 1 yr on it. This isn’t the case for everyone though. The capsules for Calquence are not enteric coated. The drug in its capsule formulation needs stomach acid for absorption.

[helenolton in reply to flipperj]

It's really strange how the pain comes and then after three hours eases up.

[country76 in reply to flipperj]

It is now in pill form.

[Startnewlife]

hello! I just started too and I notice my muscle strength and stamina have decreased as well. I’m hoping it will get better over time! Hang in there!

[Sushibruno in reply to Startnewlife]

Are your symptoms any better?