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Two questions: a)is Sjogrens common or rare and is tendonitis a common feature?

Started by MAT51, December 01, 2016, 02:10:17 AM

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anita

#30
December 05, 2016, 07:17:27 PM
Quote from: MAT51 on December 04, 2016, 01:23:30 AM
It's not Cellcept - it's Myfenax (Mycophenolate Mofetil) 500mg tablets. I'm to start at one a day increasing each week to reach a maintainance dose of 1000mg twice a day. Gosh that seems a lot of pills to have to swallow doesn't it?! They are film coated. It says with or without food but a friend who takes the same brand told me to take an hour after food, so not on an empty stomach. Have you heard of this brand Myfenax as I've noticed we in UK tend to call the drug by the generic name rather than the brand name i.e. hydroxichloraquine rather than Plaquenil?

It's still Cellcept and you're taking the same step-up dosing I had.  Just give it time to work and watch for stomach upset (mine were coated too).  I didn't have much problem (I think it was the way he slowly increased the dose and taking it with food).

Not sure where you've read that those with SFN cannot regenerate nerves...IVIG has PROVEN studies (by repeat skin biopsies showing increased nerve fibers) of increasing BOTH nerve density and morphology!  There is not as good of results with some autonomic nerve damage, but SFN definitely improves....especially in regards to sensory issues/pain from low nerve density (typical SFN finding).  I get improvement with my IVIG and I'm way outside the 'window'.  It may not be great improvement, but still noticeable difference starting after my infusion until the last few days before the next infusion.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

gurs

#31
December 06, 2016, 04:19:57 AM
I just ruptured another tendon in my wrist, and my other wrist hurts now too..tore tendons in both my ankles. Very weak. Docs said the combo of my diseases, Hormone changes from induced menopause, age, steroids can all cause tendons to get extremely weak. Im very upset. But, what can be done? I know hormones, play a huge role in all of this. I wish I could get mine straight. I cant tolerate anything in my body.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

cccourt1942

#32
December 06, 2016, 05:47:55 AM
Back to your a) query:
    I believe SjS shows up in about 1 in 70 individuals.  Seems high though.
c3
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
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