1. < Neuropathy

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

Posted by suetex @suetex, Feb 25, 2024

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, 2024
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.

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1 reply
jfn | @jfn | Feb 29, 2024
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

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harley22 | @harley22 | Feb 29, 2024

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.

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1 reply
harley22 | @harley22 | Feb 29, 2024
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.

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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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penn | @penn | Jan 25 4:05pm

Hello suetex,
Very difficult moving bowels so I think somehow pressing on my bladder? It's awful. Sojgrens , I drink so much, I try not to, I take,Pilocarpine, is there any other drug for that you know of?
I get IVIG infusions, in fact I had a port put in as my nurse suggested because my veins would roll, it hurt a lot each time. I have S.F.N. also!! Is IVIG helping you? I'm not so sure because of difficulty moving bowels, nerves down there huts so badly.

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1 reply
suetex | @suetex | Jan 25 6:16pm
In reply to @penn "Hello suetex, Very difficult moving bowels so I think somehow pressing on my bladder? It's awful...." + (show)
@penn

Hello suetex,
Very difficult moving bowels so I think somehow pressing on my bladder? It's awful. Sojgrens , I drink so much, I try not to, I take,Pilocarpine, is there any other drug for that you know of?
I get IVIG infusions, in fact I had a port put in as my nurse suggested because my veins would roll, it hurt a lot each time. I have S.F.N. also!! Is IVIG helping you? I'm not so sure because of difficulty moving bowels, nerves down there huts so badly.

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I'm sorry you're having such a hard time. I had loss of strength in my legs and atrophy and they do seem to be getting stronger. My balance is still awful but I can pick up stuff from the floor. I'm glad you are getting IvIg. It seems to be the only thing that helps Sjogren's, although it does take its time. You might keep track of how much water you drink so you can tell your dr. I wonder if your problem with your nerves in you rectum is part of your neuropathy? Just a thought...No. I don't take anything else for the Sjogren's except courses of Rituximab.

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penn | @penn | Jan 26 12:06pm

Hi,
It's good to hear that you can pick things from the floor, I can't I have to use those reachers.
T Think I tried Rituximab? Not Sure if IVIG is helping? But, I'm staying with it. I think bowels is a part my S.F.N.. My hands are start to stiffen, Arthritis over night knuckles have enlarged somewhat. What ever is happening is getting worse. I MUST GET INTO THAT CAR TO SEE MY DRS!! Because of the bowel thing pain I cannot sit!!!
I have not had my hair and nails done in months, my appearance is important to me.
Our dog just died 1/23. that's the hardest to cope with now!
Have a good day!

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1 reply
suetex | @suetex | Jan 26 2:27pm
In reply to @penn "Hi, It's good to hear that you can pick things from the floor, I can't I..." + (show)
@penn

Hi,
It's good to hear that you can pick things from the floor, I can't I have to use those reachers.
T Think I tried Rituximab? Not Sure if IVIG is helping? But, I'm staying with it. I think bowels is a part my S.F.N.. My hands are start to stiffen, Arthritis over night knuckles have enlarged somewhat. What ever is happening is getting worse. I MUST GET INTO THAT CAR TO SEE MY DRS!! Because of the bowel thing pain I cannot sit!!!
I have not had my hair and nails done in months, my appearance is important to me.
Our dog just died 1/23. that's the hardest to cope with now!
Have a good day!

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So sorry about your companion. My animals are very important to me, also. Losing one is very hard. They give us so much. Best Wishes.

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suetex | @suetex | Jan 27 6:20pm

I did try rituximab with no side effects but did it help? That I can't tell....The two together are helping so I will go for it for now. (IvIg and rituximab.)

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