Has anyone been diagnosed with POEMS syndrome?

@mak21 I'm so happy for your recovery. I wish I had that option when I was first diagnosed. I'm going to research to see if it's to late to try it now! Keeping my fingers crossed that I can at least try it! Thanks for sharing your results, it means a lot.

New to group. Originally diagnosed with Guillion Barre syndrome in january of twenty twenty five. Hospitalized and had plasmapheresis treatments and showed great improvement for ten weeks. Then, plummeted and went through treatments again and continued to get worse. Was able to get into Mayo Clinic in Rochester in June of this year. I was diagnosed with POEMS syndrome and then Plasmacytoma cancer. Steroids, chemo and all the other meds have helped me get stronger but my hands remain at 50% and I have no reflexes from my knees down. I use a wheeled walker in the house, wheelchair for everywhere else. Afo braces do enable me to walk with hiking poles. Not real coordinated, think Frankenstein walking in downhill ski boots. I often wonder, how long the nerves can go without getting signals before they just cannot receive signals again? I am coming up on a year

@cat59 Technically no,here where I got my treatment they believe in upfront transplant and it was amazing,now almost 16 months post transplant Iam able to resume lot of activities of normal life other than running,still have to use foot braces though.

@mak21 Did you do any type of Chemotherapy also?

Almost couple of months,after 5months now recovery is very fast.

Welcome to Connect, @mak21. Thank you for sharing your experience with POEMS and the positive improvements you’re seeing after the stem cell transplant using your own cells. I know that’s not an easy process but it’s really encouraging for others who have POEMS to see that there may be an option for reversing the disease.

Recovery time can take several months after an ASCT. How long post-transplant did it take until you realized some of your POEMS symptoms were disappearing?

Hi,I was diagnosed with Poems Syndrome in May of this year,had severe neurological symptoms with bilateral foot drop and was able to ambulate with a walker only,has autologous stem cell transplant upfront June 1st,now able to ambulate without a cane,this procedure is amazing,hope this helps,keep in touch and good luck.
M Khan

I’m particularly interested in hearing from others ( caregiver or patient) who are currently going through (or completed) the treatment for POEMS Syndrome.
My 73 y/o husband was recently diagnosed with POEMS Syndrome and has completed his first month of immunotherapy (lenalidomide/dexamethasone and daratumumab/hyaluronidase) with 3 more months to go. The current plan is an autologous stem cell transplant at the completion of the immunotherapy.

He did have lenalidomide dosage decreased for the 2nd cycle secondary to neutropenia ( resolved) but otherwise I believe things are going ok.

Prior to the immunotherapy, I was able to keep him from being bed bound. The polyneuropathy was advancing rapidly and once treatment started, he was too weak to tolerate much time out of bed for the first month.

Currently his endurance has improved to the point that he
requires mod/max assist with transfers and can ambulate short distances with wheeled walker with mod/ max assist. He is of course still in bed a lot of the time.
He is receiving PT at home as it was unsafe for me to assist him alone with walking secondary knees buckling and weakness in his upper extremities.

I’m a retired HHPT which has helped considerably with some aspects of his care, others not so much.

He was a “seemingly” healthy, active ( rode his bike 2 1/2 hours and worked out a few times per week) individual, with few medical problems other than cardiovascular disease.

That’s our story so far…hope to hear more about yours.

Welcome @tlth, I'm tagging a few other members into this discussion who have experience with POEMS syndrome like @gratefulone @craigkopcho @bburleson1 @casseth02 @sandy70yikes @selmon30 and others.

You may also be interested in this Mayo Clinic blog post on POEMS.
– POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/

What treatment options have been suggested for you?