Anyone had Plasmapheresis for Waldenstrom's macroglobulinemia?

Posted by ranchgal4sure @ranchgal4sure, Jan 25 11:19am

I have Waldenstrom's macroglobulinemia and read about a treatment for viscous (thick) blood.
It's called Plasmapheresis which is essentially the removal, treatment and return of blood plasma to the body. The process removes the bad plasma and replaces it with healthy plasma/fluid.
Has anyone had this done and was treatment successful in reducing viscosity of blood?

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suznsl | @suznsl | Jan 26 7:30am

Hi RanchGal. I had it done just a couple months after finding out my low energy levels was WM. (Feb of ‘25) After just my 1st blood cleansing I felt like a new person. I was told they normally do three cleansings, but I felt so good after two, they were able to discharge me. I have been like an energizer bunny since. Mine was through the jugular vein, which was a crazy process. Some discomfort when they were putting the catheter (yes…that’s what it’s called) into my neck. But then I had no trouble sleeping with it there and no issues up until when they went to remove it. And that’s when there was a lot more discomfort because it’s like my skin was starting to heal around it. But they put some lubrication on and was able to pull it right out. I was told if they have to do it again, they will use both my arms, and if it requires another procedure down the road, they will probably just put a port in my chest. You will be amazed at how good you feel. Best wishes to you!

triclonal | @triclonal | Jan 27 10:58pm

Hi Ranchgirl. That procedure is common in WM to reduce blood viscosity by filtering out the IgM molecules but not blood cells that are making it. It is not a cure, but a temporary reduction in IgM since the blood cells are still there. Only treatment will provide longer lasting reduction. A WM experienced doctor should be familiar with this. Check IWMF site for a lot of information and dedicated forum.

ranchgal4sure | @ranchgal4sure | Jan 30 11:11am

In reply to @triclonal "Hi Ranchgirl. That procedure is common in WM to reduce blood viscosity by filtering out the..." + (show)

@triclonal
Thanks for your insight...very helpful! Yes, I follow IWMF as they offer great resources and research 🙂

ranchgal4sure | @ranchgal4sure | Jan 30 11:22am

In reply to @suznsl "Hi RanchGal. I had it done just a couple months after finding out my low energy..." + (show)

@suznsl
Many thanks for sharing your experience with Plasmapheresis.
Your success with the treatment in increasing energy levels is encouraging - feeling like an energizer bunny is awesome!
While it seems the procedure can be uncomfortable - it's a valuable resource to bring back energy levels for those of us with WM :))
Again, big thanks for responding!

suznsl | @suznsl | Jan 31 7:19pm

In reply to @ranchgal4sure "@suznsl Many thanks for sharing your experience with Plasmapheresis. Your success with the treatment in increasing..." + (show)

@ranchgal4sure Would love to know how you feel, once you go through the procedure. I was then put on 420mg of Imbruvica and I’m really happy with how I feel on it. All the best to you!

ranchgal4sure | @ranchgal4sure | Feb 1 9:41am

I'm seeing my onc/hemo this week so will keep ya posted on if/when I undergo the Plasmapheresis procedure. Fortunately, I feel good overall 🙂 My diagnosis of WM was a year ago (January 2025) and Brukinsa was started at that time. I tolerate the drug well and my labs have improved...but the IgM is still way high.
I had iron infusions (4 rounds) which helped with energy levels. I feel fortunate that my quality of life is quite good even with the ups and downs with fatigue :))
Take care @suznsl
Hugs,
RanchGal4Sure

suznsl | @suznsl | Mar 1 8:33pm

In reply to @ranchgal4sure "I'm seeing my onc/hemo this week so will keep ya posted on if/when I undergo the..." + (show)

@ranchgal4sure Hello! Did you end up getting plasmapheresis? If so, how are you feeling and how do your IgM numbers look?

ranchgal4sure | @ranchgal4sure | Mar 2 3:43pm

In reply to @suznsl "@ranchgal4sure Hello! Did you end up getting plasmapheresis? If so, how are you feeling and how..." + (show)

Hi @suznsl
I ended up not needing plasmapheresis at this time as my IgM continues to trend in right direction (downward 🙂).
My local hem/onc still checks my labs monthly including CBC/CMP/Immunoglobulins. My UCSF hem/onc also reviews the labs.
WM diagnosis was just over a year ago and I'm grateful Brukinsa is working for me 🙂

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