Has anyone been diagnosed with POEMS syndrome?

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.

Welcome, @chared. I moved your post about your husband's journey (and yours) with POEMS to this existing discussion:
- Has anyone been diagnosed with POEMS syndrome?
https://connect.mayoclinic.org/discussion/have-anyone-been-diagnosed-with-poems-syndrome/
I did this so you can read previous posts and connect with members like @tlth @maggiejay @juniperjgin @consol @shaylarod @julie212 @akellmayo4me and others.

This diagnosis must have come as quite the shock. I'm encouraged to hear that the immunotherapy appears to be working for him as he prepares for stem cell therapy.

Your experience as a PT must be helpful. PTs are creative and resourceful thinkers and problem-solvers. It sounds like you are applying those skills as a caregiver. How is the polyneuropathy now? How often does he get immunotherapy treatments?

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.

A year later I am reading your post and thinking of you.
I hope this finds you in a place of progress and improvement, though the road may be long.
Perhaps some of the initial symptoms have subsided or reversed? I have heard excellent testimonies like this from others after receiving treatment.
Wishing you both all the best!

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.

I thought I would check in.
@tlth, how are you doing? Are you receiving any treatment at the moment?

@maggiejay, when will your husband start radiation and how often? How are you doing?

Welcome to Mayo Connect, @maggiejay People with POEMS syndrome have an increased number of plasma cells, which can cause damage to other parts of the body. POEMS is the acronym for Polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin abnormalities. It’s a rare multisystem disease that causes a blood cell disorder and nerve damage, with several other effects.

There are a number of members in our forum who also have experience with POEMS so let me tag them for you. Please meet @tlth, @gratefulone @craigkopcho @bburleson1 @casseth02 @sandy70yikes @selmon30 and others. Hopefully they’ll be able to offer you and your partner a better understanding of coping with the neuropathy and side effects of this condition.

I also found a number of helpful conversations for you to explore. Feel free to pop into any discussion! You can reply directly to someone by making sure you hit the blue reply button in that conversation to make sure the member gets a notification. Or simply type in their @name so they see the notice.

Living with Neuropathy - Welcome to the group https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
~~~~~
This is a great article from very well health.com
https://www.verywellhealth.com/poems-syndrome-7558580
~~~~~
An update on the diagnosis and management of the polyneuropathy of POEMS syndrome:
– https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343023/
Foundation for Peripheral Neuropathy – POEMS – Treatment & Therapy:
– https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/autoimmune-disease/poems/
POEMS syndrome care at Mayo Clinic:
– https://www.mayoclinic.org/diseases-conditions/poems-syndrome/care-at-mayo-clinic/mac-20352681

You may also be interested in this Mayo Clinic Newsfeed page on POEMS which has a link to a clinical trial that may still be available.
– 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/

I hope your partner does will with the radiation treatments. Did he also require surgery for the lesion?

'POEMS is an acronym that stands for the disorder's five major signs and symptoms, which include Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal gammopathy and Skin abnormalities.'
(From rarediseases.org)
Those are the symptoms - but they are caused by a plasma blood disorder.

Can you provide exactly what POEMS anacronym letters represent?

Hi. My partner has just been diagnosed with POEMS. He awaiting the start of radiation treatment for a lesion on his hip. He has polyneuropathy and currently his legs aren't functional at all, so rehabilitation will be a long process.
How have others coped/ dealt with this and has anyone any suggestion with approaches which worked for them?
He's mid 60s, we're in the UK.