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A MyMyelomaTeam Member asked a question 💭
Christiana, PA
July 8, 2025
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13 Symptoms of Multiple Myeloma: Pain, Skin Changes, and Others Read Article...
A MyMyelomaTeam Member

Though I'm off All MM Meds, coming on 2 years now, and I no longer take any opiates (now for over a year) for my continuing neuropathy, I can tell that my original Treatment of 7 months in 2021, has made permanent changes to my brain. My long term memory is still excellent but my short term is now terrible (much more than just being 71). What's worse is my means of very quickly doing complicated math in my head is now more than a struggle - very much a side effect of my Treatment Meds. I accept this. My overall health is excellent and my MM remains in Complete Remission but I notice the different - I've adjusted to be okay with it. My point is there's, I've definitely experienced a permanent change, even being off All MM Meds for quite some time (only 7 months in 2021 and 3 months in 2023).

July 8, 2025
A MyMyelomaTeam Member

I assume as long as were are on treatment😢

July 8, 2025
A MyMyelomaTeam Member

Hi Maynard, I posted a reply to you on another thread of yours. I would still like to meet with you. I'm sure we could share many things about MM that might help us both. Sorry to hear about your teeth. That's awful. Otherwise, I hope you are ok. We are so close it's a shame we did not get together yet. Feel free to call me--just to talk if you want. (Phone number can only be seen by the question and answer creators). Leave a msg. if I don't answer.

July 18, 2025
A MyMyelomaTeam Member

Larry2 Thank you for added information. I am not in treatment and I am off of Revlimid so I take nothing for MM

July 10, 2025
A MyMyelomaTeam Member

If you get to MRD Negative (I test by using the blood sample clonoSEQ - I'm not getting BMB), consider stopping MM Meds for Monitoring. It definitely takes time for the MM Meds to clear your system - 4 to 6 months. If you take pain meds that are opiate based, they definitely add to brain fog. For my neuropathy I was taking low dose oyxcodone for 2-1/2+ years. I'm now over a year with no opiates.

During the past, while I was taking oxycodone, I was taking 10mg Ritalin 3x daily. It was Extremely helpful to combat the brain fog / fatigue of the oxycodone. Now that I'm not taking oxycodone, I've reduced to 5mg Ritalin, 3x daily. The Ritalin continues to be very helpful for energy, focus, pain relief, and boosting our DHEA serum level (very important for brain health - it fades as we age - dexamethasone reduces our DHEA (when I mentioned it to my Onc, he was aware of this)).

Another that may help - I take ProHealth Longvida Optimized Curcumin - 4 grams daily. This unique type crosses the blood-brain-barrier and stays as Free Curcumin longer than other forms. If I was MM Active or on MM Meds, I'd probably be taking 8 grams daily.

July 10, 2025

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