MS and CLL

[MSGMP]

I have CLL and Multiple Sclerosis, who else has this?

[sllincolorado]

I do not have your combo but I am on a clinical trial for CLL that includes an infused drug that is being studied for both CLL and MS - ublituximab

biopharmadive.com/news/tg-t...

Someone much smarter than me might be able to tell you why a drug that shows potential for CLL might also be useful for MS treatment.

[AussieNeil Administrator in reply to sllincolorado]

There are quite a few drugs used for both CLL and MS. That's because MS is an auto-immune disease (which happens to target the central nervous system). Reducing the number of B-lymphocytes reduces MS symptoms, but at the cost of an impact on immunity.

MSGMP,

We do have a few members with both illnesses, so hopefully you'll get some replies from them later. Do get your CLL and MS specialists talking, as that should help you with regard to finding a treatment that manages both illnesses optimally.

Neil

[MSGMP in reply to AussieNeil]

AussieNeil, I do have doctors that are in the same network and thank goodness they talk to each other!

[MSGMP in reply to sllincolorado]

Sllncolorado, I have yet to be treated for CLL but, I do 3 injections of Glatiramer acetate a week. The Myelin between my 2nd and 3rd vertebrae is deteriorating. At my age of 66 I don't see a rebound. So, I do just about everything....except ride my motorcycle. 😢😢 Instead I ride my Elliptigo!! 😎

[bettyba]

Hi I was having problems in my late 20s and was diagnosed in my early 30s with ms and diagnosed with cll/sll in 2018. I am 1 year post FCR but unfortunately the chemotherapy has not been as successful as hoped. I go back the May for consultations and tests to see what's next. My consultants communicate and copy each other in on correspondence and the specialist nurses talk to each other. Saying that I have been stuck in the middle with some horrible health situations that both consultants did not have answers or much help resolving. I suffer from fatigue constantly - which can last for months I have try to do as much as possible to cope and take various medication when needed and then reduce the medication when not needed. It is a daily balancing act for me but I get there. At the moment I am taking medication for narcolepsy to keep me awake and it's ok and it works. You have to do your home work but there is no one thing that helps it's finding what works for you. Take care and stay sagex

[MSGMP in reply to bettyba]

Bettyba, thanks for the reply. I too hit that wall of tiredness after about 6 hours of being up. I try to get as much done as possible...probably too much. I take about a 2 hour nap and am reading to go. Being diagnosed at 65 hasn't stopped me from yard work or pushing a mower.

[msbypass4cll]

I have M.S., CLL and a host of other comorbidities. The M.S. Predates the CLL by many decades . I had. a serious neurological illness that hospitalized me for 10 months when I was 15(with a mystery diagnosis). I was diagnosed with M.S. when I was 25, and had disabling attacks and significant remissions for the next decade and a half. I stabilized and my M.S. was quiesant for the next decade . Immunomodulating drugs were in development for M.S, and there was a lot of pressure for me to start them from the conventional M.S. practitioners. My neurologist , thought I should leave well enough alone but acknowledged the official recommendations and prescribed Avonex which I started taking. About a year later (2008) An elevated white count in my annual blood test got me to a hematologist.The local pathologists could not come up with a diagnosis so I went to Sloan Kettering where they deemed me as "unclassifiable NHL in Leukemic Phase", but with a dire prognosis- unmutated, with complex karyotype, and 96% p53 deleted. I long road of questions and treatment Got me (thankfully) to John Byrd , who declared me a CLL patient with a CD 5 negative version of CLL. I provide this partial history because I have questioned whether taking an immunomodulater contributed to my getting a one of a kind cancer of the immune system. What wild and aberrant cell might have gotten past the gatekeeper? M.D.s have dismissed the question, since so many CD20 affecting drugs are being used/investigated for both diseases. However, now that I am back in neurology land, the MDs are afraid to give me the current drugs because of my cancer. Go figure.