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What's the difference?

Started by A66eyroad, July 23, 2014, 05:54:34 AM

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A66eyroad

Is there someone out there who can tell me the difference between Sjogren's and Lupus?
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.

lighthouse33



The link below may help you out.  Hope it helps.

Sj?gren syndrome and systemic lupus erythematosus are distinct conditions

Noah Scheinfeld MD

Dermatology Online Journal 12 (1): 4
Department of Dermatology, St Lukes Roosevelt Hospital Center, New York NY. Scheinfeld@earthlink.net

escholarship.org/uc/item/0jp529zq

Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

A66eyroad

Holy cow, that is the best article ever! Thank you so much. Lighthouse!   :D
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.

anita

Very interesting...especially what they say (more then once) about Plaquenil and that is NOT effective in the treatment of Sjogren's...Hmm
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

slccom

What "they say" about Plaquinel is not necessarilly true for you. Or me. Studies can be poorly designed, or have weaknesses in subject selection or be too short, etc.

Just today, our vet told us that we should not use children's Benadryl for our little allergic dog because it doesn't work on dogs. But it does work on this dog. All you can do is try it.

Sharon

anita

Oh, I have NO intention of stopping it due to this one study.  But they did seem to be very determined with the conclusion.
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

Sleepy In Seattle

#6
I think part of the problem is that the diagnoses are indistinct - honestly, they don't really know how the immune system works - or doesn't work.

In 50 years, the words "Lupus" and "Sjogren's" will probably sound as antiquated as "ague" and "dysentery" do now...my guess is that these vague classifications will be broken down into more specific and distinct autoimmune (dys)functions that layer on one another in complex ways depending on the individual's genetics, etc - as we already all know and experience!  :P

The discovery that Plaquenil helps with autoimmune disease was a fortuitous accident of history - and they STILL don't really know how or why it helps (when it does).

I say try it, and if you have few or no side effects and it helps, keep taking it. Otherwise, why bother? Everybody is different and while the studies are a good jumping-off point, there's enough ignorance in this field to make it worth at least TRYING a relatively benign treatment that does help with many autoimmune issues.

The lines are just not all that cut-and-dry.
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

Jasper

This is a good article. Thanks for posting the link.

As far as what he says about Plaquenil, he seems to make contradictory statements:

"The weight of evidence is that hydroxychloroquine is not an effective treatment for SS. In a prospective, placebo-controlled, 2-year double-blind crossover trial in 19 patients, the use of hydroxychloroquine at a dose of 400 mg daily taken over a 12-month period failed although a slight improvement in hyperglobulinanemia, ESR and IgM levels occured [24]. Despite this study, antecdotal reports continue to be published on hydroxchloroquine effectiveness for SS. Hydroxychloroquine was prescribed with clinical improvement in a 13-year-old girl with Sj?gren syndrome manifested by recurrent parotitis [25]. In an open label study of hydroxychloroquine, several SS patients improved [26]. A retrospective study of patients with SS found (a) sustained improvement of local symptoms (painful eyes, painful mouth) and improvement of systemic manifestations (arthralgias and myalgias) after treatment with hydroxychloroquine 6-7 mg/kg/day over a mean three-year follow-up; (b) a significant improvement in ESR and quantitative IgG levels; (c) no significant late toxicity [27]."

So he sites a study of 19 patients with no apparent improvement to back up his statement that Plaquenil does not work. 19 is a very small number, in my opinion, not enough to make a determination on whether a medication works for millions. And then he goes on to say that other studies show that Plaquenil did help and that patients improved. So, either I am missing something, or the studies contradict each other.
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.

irish

Keep in mind that everyone has an opinion and researchers really each like their own opinion. REmember though that there is always more than one way to skin a cat.

Also, sjogrens and lupus are really hard to differentiate from each other at times. My immunologist keeps saying "you sure remind me of a lupus patient" and then he runs the double stranded DNA and it comes back negative again and that blows his theory. Lupus and Sjogrens are kissing cousins. Irish

mshistory

You don't need a positive anti dsDNA test to have lupus. I am anti dsDNA negative but meet the diagnostic criteria for lupus, so I have an overlap disease process of SLE and Sjogren's.

Being anti dsDNA positive does put a person at a higher risk of developing kidney disease (lupus nephritis) as a result of SLE but that's not exclusive either. A lot of SLE patients who are anti dsDNA negative still develop severe kidney disease.

There are some common features between Sjogren's and lupus, specifically joint pain and fatigue. The type of skin manifestations between the two diseases are usually distinct though. Although SS-A is associated with photosensitivity (and specifically photosensitive skin rashes) in lupus patients, it typically does not cause the same kind of reaction in a Sjogren's patient. Vasculitis, however, occurs in both conditions. This is one of the reasons photosensitive skin rashes are considered characteristic of lupus and are listed in the 11 diagnostic criteria.

Pleurisy is much more often associated with SLE than with Sjogren's as well, although I do suspect that will change at some point as it seems more and more researchers are catching on that lung involvement in primary Sjogren's is more common than previously thought.

An article I read about Plaquenil and Sjogren's mentioned that Plaquenil did seem to help Sjogren's patients with synovitis and that is the one thing Plaquenil has ever helped me with.

I have had so many conversations with my rheumatologist about this subject, so I'm trying to remember some of the other differentiating characteristics between SLE and Sjogren's. He did tell me that if I did have only pSS, then I am the most severe case he has. Gee, thanks  :o What lead to my SLE diagnosis are the specific skin rashes (malar rash that spares the nasolabial folds) and photosensitive skin rashes in addition to the bouts of pleurisy, arthritis/arthralgias, blood abnormalities like anemia and leukopenia, and extremely high ANA. I also have a history of a specific kind of oral ulcer that is usually specific to lupus but that happened right after a severe flare that put me in the hospital.

There are non-diagnostic criteria that also seem to suggest lupus as well as Sjogren's, like running fevers (although this can happen with pSS) and hair loss (again, it happens less frequently with pSS than with lupus, but pSS can cause alopecia as well).

Finally, although it's still really controversial, some doctors do still think there's a connection between severe, chronic migraine type headaches and lupus. That is certainly true for me. In lupus support groups, I've noticed quite a few of the members experience the exact same thing. That's anecdotal, but all I know is that my migraines used to be limited to menstrual migraines and responded to triptan medications before I developed SLE. Since my SLE dx, they have gotten progressively worse, more frequent, and more difficult to treat.

I know it doesn't seem that way from how sick many of us are on this board, but a lot of people with Sjogren's really do experience primarily dryness symptoms and fatigue. They never develop the myriad complications we see here. Complications are par for the course with lupus. I am constantly fighting something else.  :(
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.