Author Topic: Stages of Sjogren's?  (Read 15459 times)

gold55

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Re: Stages of Sjogren's?
« Reply #30 on: April 25, 2012, 07:33:45 PM »
What if you are not suffering as much with dryness but with arthritis?  How do they know that it's Sjogrens (stage whatever) or if you would have had osteoarthritis whether you got Sjogrens or not??
My question is how do they separate arthritis from SJS......it seems like everyone with SJS has arthritis yet many with arthritis do not have SJS!!!  If this were interpreted into stages I'd already be in the second stage yet not even in stage one with the dryness issues!

For me this is very important because it will dictate whether I start Plaquenil or not.  Now if I'm just beginning a bad case of Osteo, the plaquenil won't help but if my arthritis is a manifestation of SJS then I probably should get on the drug very soon.  I don't know how the doctors differentiate what is autoimmune and what is just plain osteoarthritis!  I know my rheumie will probably say "let's just try the drug" but I'm not so free with popping potentially toxic pills.  Anybody else question this?   Perhaps Elaine (Carolina) can comment.  Thanks!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

genko_b

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Re: Stages of Sjogren's?
« Reply #31 on: April 26, 2012, 08:34:48 AM »
For gold55: For arthritis, oftentimes x-rays of the joints can tell a doc a lot about what is causing it, because the type of joint damage is different for osteoarthritis and, for example, rheumatoid arthritis. I have both, and the docs know which joints are impacted by the one or the other or both kinds at once. Perhaps your docs could take x-rays of the affected joints to get a better idea of the cause.

My own take on staging is, if it helps the doctors figure out how to help me manage the disease so my life runs more smoothly, they can use any scales or measurements or lists of stages they want. If it gets in the way by focusing their attention or mine on anything other than this management, then please don't use it.

The risk of our getting too hung up on this type of list is that we spend too much energy worrying about what will happen next, and not enough living our lives at this moment.

Take care,

Genko


gold55

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Re: Stages of Sjogren's?
« Reply #32 on: April 26, 2012, 07:40:24 PM »
Thanks a lot genko!  You are so right about not living for the moment and losing good time.  I've been trying to worry less since my diagnosis but so much of this can be confusing and can overlap with other health issues.  I did have xrays of my feet and hands and was told osteoarthritis of the big toe joints and supposedly my hands/fingers are normal!  Yet, the fullness and burning of the tendons of those fingers makes me feel that I have a rheumatic arthritis.  Perhaps it's the SJS that's causing some neuropathy and tendon inflammation!  Of course if you would ask my neuro guy.....he says it's all psycho somatic even tho some days my legs are weak, muscles stiff and my feet hurt.  I feel like I've got some form of MS!!!! 
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Meld256

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Re: Stages of Sjogren's?
« Reply #33 on: April 26, 2012, 08:45:24 PM »
gold55,

I can relate.  I was "on a mission" recently to see if we could separate some of the overlapping conditions.  Not that I really wanted a dx on anything else, but to find if there's any other treatments that might help;
Especially for the joint pain.

As I suspected, I don't know a huge amount more than I did, but I do have a more positive take on it.  I had a bone density scan (which the doc wanted me to have anyway) and it showed some moderate osteoporosis.  So a new med for that: Actonel. 
He also said I MAY have osteoarthritis or RA, but with my blood tests not showing anything, I could have RA and it not show up.

So, for now I go with what I know: Fibromyalgia, Sjogren's, Osteoporosis, Chronic Fatigue Syndrome. If I do have RA the Plaquenil I take should help that, too.

I would suggest that if you think Plaquenil might help, you could give it a try.  That's just my opinion, of course. :)  I know it's hard not to focus on a definate dx, but Genko has great advice that sometimes we can put our energy into the "maybe's" and not use our energy on living our best life.  ;)

Take care,
Melinda



Cindy

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Re: Stages of Sjogren's?
« Reply #34 on: April 27, 2012, 06:56:10 AM »
I personally don't think stages matter. We can change from one stage to the other in seconds. Is really hard not have tummy and lung involvement when there is no saliva to help our organs function properly. I guess the only way to stay in stage I is if you are lucky and the few medications (Evocax, restasis) that are available help your body.

Bucky

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Re: Stages of Sjogren's?
« Reply #35 on: April 27, 2012, 11:16:15 AM »
OK - here's a different take on the Stages of Sjogren's . . . . think of it this way:

We're all actors in this big production called LIFE and all the world is a "stage". 

Some of us are the background actors - our roles are important, but we stay hidden from view.

Some of us are supporting actors - we have some "parts" in this production, but we don't have the main role.

Some of us have multiple roles, but not the "main" role.

And, yes, some of us are actors in the lead role - "Primary" Sjogren's and all it brings.

So, pick out your Academy Award and which Oscar winner you are:

-  Visual Effects (hats, wrap-around glasses, long sleeves, protective clothing, etc.)

-  Original Screenplay (original dx)

-  Adapted Screenplay (more gems added since original dx)

-  Sound mixing (CPAP machine, humidifiers, fans, etc.)

-  Sound editing (earplugs, separate bedrooms, etc.)

-  Short Film (live action) visiting doctor when in flare.

-  Short film (animated)

-  Music (Lazy song  - "Today, I don't feel like doing anything . . . ")

-  Makeup (hair powder for thinning hair, wigs, concealer for sleep deprived eyes, etc., eyedrops, lotions, etc.)

-  Foreign Language Film (since a lot of our doctors don't know about Sjogren's - it must be foreign to them)

-  Documentary (short subject) - our quick abbreviated 10-15 minute office visits with the doctor

-  Documentary (Feature) - perhaps our first Rheumy appointment (?)

-  Directing  (our pharmacists with the directions to our medicine)

-  Costume Design - this could be part of the visual effects too.

-   Cinematography - when we snap pictures of our strange rashes, swellings, etc. to document for our doctors - who think we make these things up.

-   Art Direction -  some of the colorful spots and splotches we get on our skin from Sjogren's

-   Animated Feature Film (some of our posts here on the forum???)   ;)

-  Actress & Actor in a Supporting Role - now, no fighting over this role!!   ;)

-  Actress & Actor in a Leading Role - again, no fighting over this role!! 

And the Oscar goes to . . . . . . . . . .

My take on all this . . . Que Sera, Sera . . . (whatever will be, will be).  Enjoy life and LIVE life, and above all . . . BREATHE!!   ;D

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

mshistory

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Re: Stages of Sjogren's?
« Reply #36 on: April 27, 2012, 01:37:49 PM »
OK - here's a different take on the Stages of Sjogren's . . . . think of it this way:

We're all actors in this big production called LIFE and all the world is a "stage". 

Some of us are the background actors - our roles are important, but we stay hidden from view.

Some of us are supporting actors - we have some "parts" in this production, but we don't have the main role.

Some of us have multiple roles, but not the "main" role.

And, yes, some of us are actors in the lead role - "Primary" Sjogren's and all it brings.

So, pick out your Academy Award and which Oscar winner you are:

-  Visual Effects (hats, wrap-around glasses, long sleeves, protective clothing, etc.)

-  Original Screenplay (original dx)

-  Adapted Screenplay (more gems added since original dx)

-  Sound mixing (CPAP machine, humidifiers, fans, etc.)

-  Sound editing (earplugs, separate bedrooms, etc.)

-  Short Film (live action) visiting doctor when in flare.

-  Short film (animated)

-  Music (Lazy song  - "Today, I don't feel like doing anything . . . ")

-  Makeup (hair powder for thinning hair, wigs, concealer for sleep deprived eyes, etc., eyedrops, lotions, etc.)

-  Foreign Language Film (since a lot of our doctors don't know about Sjogren's - it must be foreign to them)

-  Documentary (short subject) - our quick abbreviated 10-15 minute office visits with the doctor

-  Documentary (Feature) - perhaps our first Rheumy appointment (?)

-  Directing  (our pharmacists with the directions to our medicine)

-  Costume Design - this could be part of the visual effects too.

-   Cinematography - when we snap pictures of our strange rashes, swellings, etc. to document for our doctors - who think we make these things up.

-   Art Direction -  some of the colorful spots and splotches we get on our skin from Sjogren's

-   Animated Feature Film (some of our posts here on the forum???)   ;)

-  Actress & Actor in a Supporting Role - now, no fighting over this role!!   ;)

-  Actress & Actor in a Leading Role - again, no fighting over this role!! 

And the Oscar goes to . . . . . . . . . .

My take on all this . . . Que Sera, Sera . . . (whatever will be, will be).  Enjoy life and LIVE life, and above all . . . BREATHE!!   ;D

Bucky

Ha! Bucky, this is awesome  ;D Can't I just get out of this film though??? I would so much rather be sitting in the audience.
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.

Parched

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Re: Stages of Sjogren's?
« Reply #37 on: April 27, 2012, 02:24:54 PM »
Lol Bucky,

That is really creative.  Even my presjogrens brain could not have come up with that outlook.  I'm giving you an A++++ for that!!!  Thanks for the chuckle...

Mshistory save me a seat, I would also prefer to be in the audience.

prunella

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Re: Stages of Sjogren's?
« Reply #38 on: April 27, 2012, 03:07:17 PM »
So those of us who need additional income could whip off a few articles for extra cash??
Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.

THE BRIT

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Re: Stages of Sjogren's?
« Reply #39 on: April 27, 2012, 11:36:48 PM »
  That was really great Bucky.  I got told by my rheumy that I have RA, OA and a form of arthritis that is casued by SJS so the Plaquenil has helped but recently I started developing lumps on my joints primarily my fingers, so it can only do so much.

Katybarstool

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Re: Stages of Sjogren's?
« Reply #40 on: April 28, 2012, 05:34:04 AM »
Bucky

You get the awared for SUPERSTAR - what a brilliant post.

Kathyx

gold55

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Re: Stages of Sjogren's?
« Reply #41 on: April 28, 2012, 08:06:48 AM »
That's hilarious Bucky....I hope I can stay a "background actor" until the show receives its awards!!!  I'm not interested in receiving the big AI (Academy Immune) Award!!  I'd like to stay low profile and keep the paparazzi (sp?) out of my life :D
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with