Author Topic: A Rheumy with Sjogren's speaks out about Sjogrens  (Read 5775 times)

warmwaters

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A Rheumy with Sjogren's speaks out about Sjogrens
« on: November 14, 2013, 07:45:20 AM »
http://www.the-rheumatologist.org/details/article/5438851/Speak_Out_Rheum_A_PhysicianPatients_Experience_With_Sjogrens_Syndrome.html
She discusses issues of diagnostic criteria, fatigue and research, as well as the impact it has on one's life.

Courtesy of the marvelous Sjoggie blogger Julia at http://reasonablywell-julia.blogspot.com, whose blog I also recommend.

EDITOR AMENDMENT* this link does not connect to the article named. When contacted, the editor at the rheumatologist.org said they had transitioned to a new content management system a while ago and not all the links remained the same. Shew offered this link as a possible replacement: http://www.the-rheumatologist.org/article/speak-out-rheum-under-the-radar/
« Last Edit: May 12, 2016, 03:19:58 AM by Linda196 »
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

litliwlowa

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #1 on: November 14, 2013, 08:48:37 AM »
It's an outstanding article. She nailed the dilemma as it is - spot on.

Oddly enough, at least according to my rheumy, the current diagnostic criteria is only relevant for eligibility for clinical research trials.

Well, what about those of us seronegatives that have incredible life limiting systemic issues far beyond the scope of dry eyes/dry nose/dry mouth and dry bum?

It's refreshing to see that a rheumy who actually has sjogrens (which I wouldn't wish on anyone) really does "get it", albeit from personal experience. That part is sad, that she also has sjogrens.
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

finallyadx

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #2 on: November 14, 2013, 09:13:40 AM »
Love, love, love it - thanks for sharing!
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

powderpuff

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #3 on: November 14, 2013, 10:30:47 AM »
Great article! Thanks for sharing.

HB33

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #4 on: November 15, 2013, 10:31:36 AM »
Thank you for sharing the article. It was a very informative article.  It is good to hear from someone who (unfortunately) has it and can share a clinical perspective on the disease.

HB33
Hashimoto's thyroiditis (2012), Sjogren's Syndrome (2013) Fibromyalgia (2013) Seronegative Inflammatory Arthritis (2013).
"Illegitimi non carborundum" ;)

Annj5

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #5 on: November 20, 2013, 07:05:26 AM »
This is an amazingly insightful and well-written article, isn't it? Just wanted to make a small correction: Sarah is indeed an MD but is not a rheumatologist. Previously, she was a public health physician focused on child health, family planning, and STD for the city of San Francisco and Contra Costa County. Her article was published in "The Rheumatologist" which may be what created the confusion. I also wanted to add a big Thank You to the moderators and participants in the forum. It's a lifeline for so many. Thank you for all of your hard work. -- Julia

MirkeshCat

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #6 on: December 03, 2013, 06:43:31 AM »
Very good article!
male, 37, married with children :)
Paramedic
SjS, Graves, PTSD, chronic EBV
Thyroxine, Plaquenil, Betablockers

DD

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #7 on: January 16, 2014, 12:01:17 PM »
Awesome article! Since coming to this forum I have found so many who are having the same issues I'm having. Its so good to read this article tho, from a doctor's perspective, so another doctor might actually read it and begin to see what we're ALL dealing with. I print it off, and I'm going to take it to my doctor on my next visit! In fact, I think I will also take it to the next rhuem. I see as well. As I truly believe, the last rhuem. I saw had little to no experience with sjogrens. She put it nicely into words, in a way I couldn't. Doctors pay more attention when its another doctor! thanks so much for sharing this!!!

A66eyroad

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #8 on: January 17, 2014, 12:59:54 PM »
Best article ever! Thanks for sharing it with us!
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

SassieCat

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #9 on: January 19, 2014, 10:22:21 AM »
Excellent article!  I only wish that more doctor's could read this and understand more clearly what it is like to have this.  Thanks for posting.

joyceannett

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Re: A Rheumy with Sjogren's speaks out about Sjogrens
« Reply #10 on: October 30, 2014, 09:16:35 AM »
It's good to have a Dr's perspective on this awful disease! I know how she must be feeling very low and not well, and I wouldn't wish this on anyone but it's handy to a someone who know's how this disease works and the way it affects day to day living!!!