Is anyone else suffering from bone pain due to multiple myeloma?

Hi all, you may also be interested in these related discussions:
- Any suggestions to alleviate Bone Pain from Multiple Myeloma? https://connect.mayoclinic.org/discussion/bone-pain-from-mm/
- MGUS with bone pain? https://connect.mayoclinic.org/discussion/mgus-with-bone-pain/

See all https://connect.mayoclinic.org/group/blood-cancers-disorders/

I had a lot of pain from Myelofibrosis. Once i was put on Ojjaara it all went away

That’s encouraging. That’s my next conversation with Dr. the shoulder pain.

Hollie

How is his life now

Hi @lmkmom, I know this post is meant for @itlooksunny but thought I would pop into the conversation to let you know her husband had an autologous (ASCT) transplant using his own cells for multiple myeloma.

While certain aspects of the ASCT are similar there is a much lengthier and monitored recovery period with the Allogeneic (allo) transplant you are considering. ASCT patients are receiving their own cells with their familiar immune system after their marrow has been treated for cancer cells. So there’s no concern regarding incompatibility between the donor's cells and their own cells.

I’m only bringing this up because comparing post transplant journeys with the two different types of stem cell transplants won’t quite match up in experience.

How’s the donor search coming along? Any news yet?

@aoifet I have a well documented MM lamda light chain with many leisons in my spine. Five years in remission I am starting to have nerve pain almost everywhere. Knees , elbows, sciatic in my legs. Just a coincidence or related? Last cray shows no new lesions

@wesleym Thank You! I really would have benefited from this information 3 years ago! After 20 years of MGUS and being told to report bone pain I did still not have this much clarity on the subject- but knew I had to press on for a more complete diagnosis. I now am thinking I may have reported elbow or knee pain when it was the long bone near those areas. Did persist for diagnosis and recently started treatment for Multiple Myeloma and Amyloidosis.

I have PMR and SMM. I was prescribed prednisone before the SMM diagnosis. 25mg relieved all of my hip girdle pain but only 80-90% of my shoulder and neck pain. I have severe cervical spine issues which may account for the neck pain but my rheumatologist thinks the remaining shoulder pain was due to the SMM. A PET scan was clear for lesions and so my hematologist oncologist doesn't think so. I've also had X-rays and MRIs that only show mild to moderate arthritis in my shoulders and hips, which is age appropriate. The one possibility is that my SMM is more advanced than it showed on the bone marrow biopsy because of prednisone suppression, but I won't know until I finish my prednisone tapering.