Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hey guys,
I hope everyone is doing well. Here's a little background information about my situation: I am antiSSB and ana positive. I have dry eyes and mouth, but these are not my main concern. I am photosensitive and suspect an SLE overlap, but my doctor didn't test me for the more specific anitbodies for SLE so I am diagnosed with Sjogrens at this time. I also have sphincter of oddi disease/papillary stenosis and am being tested for autoimmune hepatobiliary diseases this week. My rheumy currently has me on the following medications: methotrexate injection 15 mg per week, plaquenil 200mg bid, diclofenac sodium 75mg bid, cevimeline 30mg tid, folic acid 1mg, cyclobenzaprinze 5mg, and I'm in the process of tapering off prednisone 10mg per day-although I would prefer to stay on the prednisone. I am also on Restasis and Cymbalta.
I am still in a great deal of pain even on all of this medication, and this isn't the only health problem that I have. I still feel stiff and have some trouble with my grip. New joints such as the writs and the ankles are becoming affected. I don't have the stamina to do anything that somebody my age should be able to do and it is depressing. I am weak and my muscles burn and ache even when I just wash my hair. Also, I have just noticed more that my pain seems to be affecting my mood. I am unable to take opioid painkillers right now, so my rheumy is my main source of hope in this matter.
What is working for you guys?
Is anyone on Rituxan? I am interested in this, but I believe I have other options at this time.
I hope everyone is doing well. Here's a little background information about my situation: I am antiSSB and ana positive. I have dry eyes and mouth, but these are not my main concern. I am photosensitive and suspect an SLE overlap, but my doctor didn't test me for the more specific anitbodies for SLE so I am diagnosed with Sjogrens at this time. I also have sphincter of oddi disease/papillary stenosis and am being tested for autoimmune hepatobiliary diseases this week. My rheumy currently has me on the following medications: methotrexate injection 15 mg per week, plaquenil 200mg bid, diclofenac sodium 75mg bid, cevimeline 30mg tid, folic acid 1mg, cyclobenzaprinze 5mg, and I'm in the process of tapering off prednisone 10mg per day-although I would prefer to stay on the prednisone. I am also on Restasis and Cymbalta.
I am still in a great deal of pain even on all of this medication, and this isn't the only health problem that I have. I still feel stiff and have some trouble with my grip. New joints such as the writs and the ankles are becoming affected. I don't have the stamina to do anything that somebody my age should be able to do and it is depressing. I am weak and my muscles burn and ache even when I just wash my hair. Also, I have just noticed more that my pain seems to be affecting my mood. I am unable to take opioid painkillers right now, so my rheumy is my main source of hope in this matter.
What is working for you guys?
Is anyone on Rituxan? I am interested in this, but I believe I have other options at this time.
First, you are so much more knowledgeable about your blood work than I am! I tested ANA Positive, but my ANA was speckled. I have since started IVIG treatment for my Immune Disorder, so I will never get accurate ANA test results again.
My Rheumy has kept my DX based on a positive Schirmer's test, Salivary Gland Biopsy,MRI results, original bloodwork, SED Rate, and she'll also evaluate an upcoming Neuro Psych Eval.
Like you, Dry Eyes and Dry Mouth are not my main concern-I handle both well using OTC's. I take Plaquenil and Flexeril. What caught my eye about your post is that recently I have been developing worsening wrist pain and finger joint pain...my wrists feel like they are broken and I can barely grasp a pen. I just saw my Rheumy and had X Rays done of my hands and wrists...waiting on the results.
My Rheumy does not RX pain meds and does not believe narcotic pain meds are effective for Fibro or Sjogren's...I would kinda like to find that out for myself lol
I rally don't know how to treat the wrist pain, and it is becoming debilitating- hurts to drive, carry groceries, etc...I'll let you know if anything comes up in my X Rays and my treatment changes, and please keep me posted if you get any new info regarding your wrist and ankle pain
Best, LuLu
My wrists feel like broken bones when I move them back and forth, and my fingers feel more like joint pain.
I can't take any NSAIDS due to GI problems, so that eliminates a lot of possible treatment options.
Thanks, LuLu
Hoping you find some relief for your troublesome symptoms and hopefully someone on this board can offer some advice and input as to Rituxan and their experiences.
Sending you positive thoughts and prayers.
Good luck at your Rheumy Appt. I hope that Rituxin is a med that you tolerate well and relieves pain
I read a bit about the med, but please update if you use the med...I would be very interested to hear your experiences.
Best, LuLu