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New combo treatment for sjogren’s

Started by Tharrell, November 02, 2018, 04:50:09 AM

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Tharrell

This is from the Annual ACR meeting:

CHICAGO – Combination therapy with leflunomide and hydroxychloroquine met all goals for efficacy, safety, and tolerability among patients with primary Sjögren's syndrome in a randomized, placebo-controlled pilot study, lending support to evidence suggesting the two drugs have additive benefits.

It was just a small study and a larger study is needed. It also seems to help with the drieness issues and seemed very promising. I have been on the leflunomide, plaquenil, orencia combo for more than a year, but I also take cevimeline. Overall my drieness issues have much improved. I only use night time genteal ointment as I can't tolerate either restasis or xiidra.
Here is the link to the article at MDedge:https: //www.mdedge.com/rheumatologynews/article/178681/lupus-connective-tissue-diseases/leflunomide-hydroxychloroquine
MCTD, sjogren's,dRTA,CVID, sero neg. ra,achalasia,Morvan's syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,B6,Florinef, propanolol,sodium bicarb, plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,omeprazole, mexiletin

Sharon

Thank you Tharrell, this is interesting.
I personally did not find hydroxychloroquine (Plaquenil) to be at all "tolerable"
as it caused me severe side effects including neuropathy unfortunately.
I wonder how many others here are on both of the meds mentioned and finding it helps the sicca symptoms?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

warmwaters

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Maria3667

Hi Tharrell,

Interesting study which was conducted in my own country and I knew nothing about... Lol... ;)

I'm a bit surprised at the results cause I had a severe adverse reaction to hydroxychloroquine: terrible hypothermia and constipation as if my metabolism totally shut down.

Also, the study proclaims short term benefits, but mentions nothing about long term (or side effects). From browsing in patients forums I gather leflunomide is not so innocent. Some patients say it gives them neuropathy - especially after long term use.

The cure might in this case be worse than the ailment.

Thanks for posting nonetheless, it's hopeful news the medical community has our attention and is trying to find a cure!
54. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02) - changed to Sicca ('20), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18), Pilocarpine, thyroid meds, 12.5mg quetiapine. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex