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Rheummy in Seattle

Started by trc1962, August 03, 2016, 02:36:18 PM

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trc1962

Since I live on the east side of Washington and just am not finding any answers to my issues I am looking at Seattle. I am looking for a rheumy who can handle the complexities of a connective tissue disorder and the neuropathy. In the shower this morning my leg turned bright purple and then kind of gave out. The rheumy says he knows of nothing else to do besides the oral prednisone and the cellcept and he isn't convinved rituxan is helpful for neuropathy. This is a last ditch effort to try and teach a partial job this year at school and find answers and if it means traveling, I will do it. I have Group Health Insurance, so it may be difficult, but it is worth a try. Any suggestions are appreciated!

cccourt1942

My fave rheum left Dallas nearly a year ago for Seattle: dr. Yin.  Don't recall first name.  She's wonderful
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

trc1962

Thank you for a name! I will do a search and see what I come up with.

cccourt1942

Su Yin , MD. 
Hope you find her. 
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Jasper

I just posted this in another thread but will post it here in case you do not see the other thread. These are the new clinical practice guidelines for the management of Sjogren's publiched online July 7 in Arthritis Care & Research. You will see that Rituximab is recommended for Sjogren's neuropathy, as well as for other manifestations.

Medscape Medical News:   New Guidance on Managing Sjogren's Rheumatologic Problems, August 02, 2016

"The first US clinical practice guidelines for management of primary Sjogren's system were published online July 7 in Arthritis Care & Research and include a decision tree for the use of oral disease-modifying antirheumatic drugs (DMARDs) for inflammatory musculoskeletal (MSK) pain, guidance on patient self-care and exercise to reduce fatigue, and recommendations for uses of rituximab in Sjogren's. The Clinical Practice Guidelines Committee discouraged the use of tumor necrosis factor-α (TNFα) inhibitors for patients with Sjogren's who lack other indications for those agents, including patients with sicca symptoms. ..........

Hydroxychloroquine (HCQ) "remains the first line therapy for inflammatory musculoskeletal pain in Sjogren's ..........

The guideline provides a decision-tree table beginning with HCQ and progressing to methotrexate (MTX), then HCQ plus MTX, then short-term corticosteroids, then long-term (>1 month) corticosteroids.

The panel recommended that clinicians not use TNFα inhibitors to treat sicca symptoms in patients with primary Sjogren's, but consider them in patients who also have rheumatoid arthritis (RA) or related conditions. The authors also note there is "no evidence that the subset of RA patients with Sjogren's who have been treated with anti-TNF-α agents have an increased incidence of lymphoma. Therefore, this recommendation should not be interpreted to discourage use of TNF inhibitors in situations where there is overlap with RA or where TNFα inhibition therapy is indicated for the treatment of inflammatory arthritis."

The group recommended that clinicians consider rituximab for treating keratoconjunctivitis sicca in patients with primary Sjogren's inadequately controlled by conventional therapies including topical moisturizers, secretagogues, anti-inflammatory agents, immunomodulators, and punctual occlusion. They also recommended consideration of rituximab for xerostomia in patients with primary Sjogren's who have some residual salivary production and significant evidence of oral damage inadequately controlled by conventional therapies, including topical moisturizers and secretagogues.

The authors also recommend rituximab as a possible option for adults with primary Sjogren's and a variety of other systemic manifestations including vasculitis with or without cryoglobulinemia, severe parotid swelling, inflammatory arthritis, pulmonary disease, or peripheral neuropathy (especially mononeuritis multiplex). .........."
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

trc1962

Thanks for the interesting article on rituxan, I wish my rheumy would read it and at least consider it as the cellcept so far hasn't helped. I know a gal that had some very bad sjogrens neuropathy that didn't allow her to work, but after a few months on rituxan she was able to return to work as it completely worked on her neuropathy. Thanks again, I can always leave the article for the rheumy and maybe he will read it?