Relapsed CLL?

[fish61]

Diagnosed with CLL in 2012, treated in clinical trial with Ibrutinib... in 2015 I was in remission ...during those 2+ years I was tired and had leg muscle aches, sometimes severe , but I wrote that off as fatigue due to the disease and probably the Ibrutinib.

In 2017 my leg muscles got extremely sore after 10 AM , but because of the flood problems (Texas) I tried to ignore the aches... finally in Jan 2018 the soreness forced me to seek medical help...every test possible was completed and the diagnosis was poly myositis..I was treated with 40 mg of Prednisone and within 3 HOURS I was pain free.. the only thing the tests showed was Nucleolar.. and ANA titer 1:320..my auto immune system was causing the problem... but was it???

This week a lung problem forced a ctscan that showed a lymph node 2.5 cm in left supraclavicular region .. Then realized the lymph nodes on right side of neck are swollen and have been for a while... blood work.. WBC .RBC .HEMO AND HCRIT ARE NORMAL.. .... ... weaned off prednisone this week...finally ... Oncologist hinted that auto immune problems go hand in hand with CLL ...now am wondering if I have a recurrence of CLL and further if I ever got rid of it as I have had severe muscle ache for as long as I have had CLL.. back to 2012...it just became unbearable 8 months ago...currently awaiting return call from Oncologist... thoughts? questions ?

Tired now , have not proof read the above but want to post it before nap.

[Jm954 Administrator]

There might never be answers but it’s very interesting. Have you discontinued the Ibrutinib? Please let us know what else they say.

[fish61 in reply to Jm954]

stopped statins in 2005 as I had creatine kinase reading of 900, it took a few months to get it to normalcy.

[Jm954 Administrator in reply to fish61]

Crikey, 900!

[Grieb]

Are you taking a Statin (Lipitor, Zocor,etc)? These cholesterol drugs often cause similar symptoms.

[fish61 in reply to Grieb]

No statins now and Ibrutinib stopped in Dec 2015 or 2016.