Rituxan and Worsening Neurological Symptoms

[Jreyno00]

Hi. I'm new to the forum and Sjogrens. I was diagnosed in March of '17 after some strange lesions on my feet. Only then did the dryness start. In August of '15 I developed Interstitial Cystitis which I believe to have been the start of the Sjogrens. I'm on Plaquenil and some meds for the IC. Around June the neuropathy in my feet began and has quickly been spreading. I have seen a neurologist who confirmed sfn. My dr started me on Rituxan (10/13/17) after I could not tolerate Cymbalta or Neurontin for the neuropathy in my hands and feet. Ever since my first infusion, which went really well btw, I've been having increased neuropathy issues. This all exploded on Tuesday with neuropathy in my face, vertigo, and a headache. Is this neurological upset normal after an infusion? How long does it take to see improvements? I know that Jasper has seen great improvement, but what about others?Everything I see on-line shows Rituxan doesn't work for neuropathy. With the speed at which this has been progressing I'm scared I may be forced to go on disability at 34.

Sorry if this is disjointed, my brain is not as good as it used to be.

[A Mom on Spin]

I have had no improvement in my neuropathy since being started on Rituxan last May, nor did I expect any.   My rheumatologist/neurologist prescribed IvIG infusions for that but my insurance will not approve its use for small fiber neuropathy.

I feel that my SFN is also progressing at an alarming rate, but not yet in my face.

Wishing you all the luck and the best medical help available!

[irish]

I am wondering if you need a neurological workup as the symptoms you mentioned could be indicative of other neuro issues that would not be helped by the present IV therapy. Just a thought but worth pursuing. Good luck. Irish

[angeldancer]

I was thinking the same as Irish.  My rheumy said that Ivig does not help with a lot of things.  He is concerned about having me on too many meds.  I just found out yesterday going to the pharmacy that I am only allowed 6 meds a month.  Boy oh boy, I will have to tell my doctor to write the scrip for 2 month intervals and stagger them to get them.  Keep up with your symptoms and write down how each med side effects.  Hang in there!

angel dancer

[vrystaat]

My SS started with severe symptoms of polyneuropathy. I went undiagnosed at a leading Los Angeles University for over 15 years. The high-end Rheumatologist that I first consulted did also not make the diagnosis. Then severe symptoms started
and all my labs turned abnormal, indicating active disease. I have tried all the immunosuppressive drugs and none of them helped the neuropathy. I am now a fall risk
due to lack of feeling in my legs.