Has anyone been diagnosed with POEMS syndrome?

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?

My partner is now 16 months into his POEMS journey.
He had radiotherapy for 4 weeks in August/ sept 2023 for a lesion on his hip. Since then he has had similar drugs to your husband. Dara + steroids+Lena to start with weekly, dropping to fortnightly. Now it's Dara +steroids monthly.
ASCT isn't being discussed - we're in the UK and this doesn't seem to be done as routinely as in the USA. And he is 67.
Physically he still can't bear weight without some support - be it a frame or therapists help. And if course, he can't walk either. He can now transfer from bed to chair with a board which opens so much more to us - he can now get in the car unaided.
He has foot drop and similar with his hands although those are getting better.
Changes have been very small and very slow. We haven't had as much physiotherapy as we'd hoped, but when he is discharged from the rehabilitation unit he is in, we'll investigate getting more frequent sessions.
We'll need to change our accomodation, as stairs are now unworkable.
We don't know what the future holds - will he able able to walk unaided? Go up steps? Drive? But it's going in the right direction and his Veg F has been coming down and is currently in the 'normal' range.
Best wishes to you and your husband. I hope all goes well with you both.

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.

Thank you for asking @colleenyoung . My partner has been diagnosed with plasmacytoma.
He starts radiation in 9 days, 20 doses over a month, not at weekends. While they calculate that he's been put on a strong steroid (dexamethasone) and a chemo drug (lenalidomide/ revilimid.) Both have side effects which have affected him. Blood sugar spikes with the steroid.
Thank you for asking how I'm doing - I'm tired, but so relieved a treatment plan is in place. We are very fortunate the hospital he is in is only 20 miles away although I didn't expect my first few months of retirement to consist mainly of hospital visiting.
He is coping fairly well, and now the treatment is underway he is much more positive. He has been warned about increased pain in the short term and that this will take a few months to lessen. It's still a long road ahead.