1. < Neuropathy

I have Sjogren's neuropathy of my legs. Anyone try Rituximab?

Posted by suetex @suetex, Feb 25 11:13am

My SFN biopses of my knee and ankle were "zero". I am doing IVIg and getting worse. What sort of testing should I demand from my neuro? (his' also a neuromuscular expert). What do you think of rituximab?
I think something needs to be done now!

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harley22 | @harley22 | Feb 28 10:47am
In reply to @ccben70 "I have had peripheral polyneuropathy for 12+ years. No pain ever, but increasing numbness/weakness/leg fatigure/balance issues,..." + (show)
@ccben70

I have had peripheral polyneuropathy for 12+ years. No pain ever, but increasing numbness/weakness/leg fatigure/balance issues, beginning at feet and now up to knees. Hematology specialist MD diagnosed me with lgM MGUS (Monoclonal Gammapthy), which he thinks might have contributed to my neuropathy. He offered Rituximab infusions as possibly helping with neuropathy, but only in 30% of treatments and that could be months or a year hefore see any improvement, if do see any. I did two sets of 4-infusions each. He said to return in a year (April 2024) and see if any neuropathy improvement. After 10 mths since last infusion, I have not seen any improvements, and actually leg numbness/fatigue/balance has advanced further up to my knees. Would be interested in learning if anyone has had these infusions and seen any improvement.

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That’s what I’m afraid of.
No guarantee it will work for me.
I had 8 mos of IVIG infusions that didn’t work for me either.

REPLY
1 reply
jfn | @jfn | Feb 29 6:51am
In reply to @harley22 "That’s what I’m afraid of. No guarantee it will work for me. I had 8 mos..." + (show)
@harley22

That’s what I’m afraid of.
No guarantee it will work for me.
I had 8 mos of IVIG infusions that didn’t work for me either.

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Hi @harley22

What else do you do for the PN? We have 'chatted' before, I just do not remember. IVig takes a while maybe longer for IVig to work. I am sorry that your numbness is there.

JFN

REPLY
harley22 | @harley22 | Feb 29 10:05am

I take Tramadol 50 mg in the evening for my foot pain, and I apply salon pas pain patches to those areas of my feet that hurt.
During the day, I take Ibuprofen for my foot pain every 5 hours,usually in the am, and later afternoon.
I also have CBD roll on ointment that I apply directly to my foot areas that hurt.
I just started yesterday taking 600mg of Alpha Lipoic Acid which was mentioned by someone on this site,and that it helped their foot spasms.
My pain management doc said to also take Magnesium for nerve pain.

REPLY
1 reply
harley22 | @harley22 | Feb 29 10:07am
In reply to @harley22 "I take Tramadol 50 mg in the evening for my foot pain, and I apply salon..." + (show)
@harley22

I take Tramadol 50 mg in the evening for my foot pain, and I apply salon pas pain patches to those areas of my feet that hurt.
During the day, I take Ibuprofen for my foot pain every 5 hours,usually in the am, and later afternoon.
I also have CBD roll on ointment that I apply directly to my foot areas that hurt.
I just started yesterday taking 600mg of Alpha Lipoic Acid which was mentioned by someone on this site,and that it helped their foot spasms.
My pain management doc said to also take Magnesium for nerve pain.

Jump to this post

I’m not doing IVIG infusions anymore because they didn’t seem to help me.
I did them for 8 mos.

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