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Balance issues during Velcade maintenance

by GuyHasIt on Tue May 01, 2018 9:16 pm

I have been on maintenance therapy of weekly subcutaneous Velcade for 10 months. I recently developed some issues with my balance when walking. For instance, I find myself leaning and catching myself on the wall or counter. It’s as if I’m aware of it but can’t correct on my own without help leaning on something to correct it. I'm not sure if I would fall, but I certainly seriously “list” to one side, and I have to take several steps to correct.

Is this something that happens routinely while on Velcade as maintenance therapy? Does it signal any potential problems? Can anything be done about it (other than changing the treatment I'm receiving)?

GuyHasIt
Name: Guy T.
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2008
Age at diagnosis: 49

Re: Balance issues during Velcade maintenance

by Victor L on Wed May 02, 2018 7:56 am

Hello Guy,

I think this problem is not uncommon. I have certainly experienced it. Would using a walking stick help? My main concern would be to avoid walking too close to a busy road, as there could be a risk of inadvertently walking into the path of a moving vehicle.

Best wishes from Victor L

Victor L
Name: Victor L
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 58

Re: Balance issues during Velcade maintenance

by Cheryl G on Thu May 03, 2018 8:27 am

Hi Guy,

Just to add a bit to Victor's helpful feedback, Velcade can cause low blood pressure in some people, and this in turn can cause dizziness. Is that something similar to what you're experi­enc­ing.

There's a discussion of the Velcade-low blood pressure connection in this thread:

"Dizziness & low blood pressure while on Velcade" (started Aug 15, 2016)

and also in this thread (which TerryH references in the above thread):

"Dizziness after multiple myeloma diagnosis & treatment" (started June 21, 2010)

I hope you're able to get to the bottom of this and find a solution. Please let us know what you learn.

Cheryl G

Re: Balance issues during Velcade maintenance

by GuyHasIt on Thu May 03, 2018 1:08 pm

Thank you for the responses.

I have experienced a “plunge” in blood pressure twice during my time on Velcade. I was prescribed midodrine for when it happens. Thought I was dying the first time. Seriously. Luckily, being an RN, I figured it out quickly, but it scared the begeebees out of me. Have not had a blood pressure drop like that in 2 months, thankfully. Good that you brought it up tho. I had almost forgotten about those episodes.

I am leaning toward Xtampza (oxycodone; pain med) as the culprit. I am on day #2 without it and the “wobbly” feeling is definitely better. I will have an MRI soon to rule out posterior reversible enceph­alopathy syndrome (PRES) (aka reversible posterior leukoencephalopathy syndrome, or RPLS). Will post the outcome of that.

Thanks for the suggestions. Stay strong!

GuyHasIt
Name: Guy T.
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2008
Age at diagnosis: 49

Re: Balance issues during Velcade maintenance

by GuyHasIt on Wed May 16, 2018 11:53 pm

Well, my MRI results didn’t show anything. Oncologist is referring me to a neurologist. Although my symptoms started shortly after my pain med was switched to Xtampa (oxycodone), I still suspect the Velcade as the culprit. Always so many questions and few answers. I will keep you updated as we work our way to resolution. Stay strong!

GuyHasIt
Name: Guy T.
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2008
Age at diagnosis: 49


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