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SjS is in remission

Started by SjoGirl, May 01, 2017, 02:08:42 PM

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SjoGirl

May 01, 2017, 02:08:42 PM
Hello all,

Many of you have been great supports on what has been a nearly 10 year journey since I first became significantly ill . It took me more than the now average 3 year to be diagnosed with SjS and other issues and closer to the 5 years that used to be the norm. It's taken nearly all of 9 years to find the right docs and treatment regimes, but I am finally there.

As some of you know I recently participated in testing to take part in a clinical trial. While I had many signs of SjS including lack of saliva (despite taking Evoxac) and very low Schirmer's scores, my SSB was in the normal range for the first time in years. My rheumy believes that my SjS is in remission and I am not going to argue.

I am working on adjusting drugs to deal with ongoing nerve pain from peripheral neuropathy and degenerative disc disease and added Cymbalta to the Gabapentin I've been taking (I'm hoping to sub Cymbalta for the Gabapentin, but my neurologist is skeptical about that coming to fruition).

Thanks to all of you who have given me so much support over the years, I would not be in this place without you. While I may not be on this site as often I will visit to keep up with all of you and answer questions from others who are still traveling the path to finding as much wellness as possible.

SjoGirl
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

SunshineDaydream

#1
May 01, 2017, 07:21:03 PM
Glad to hear things are going well for you after your long journey with Sjogren's, SjoGirl! I hope you find improvement regarding neuropathy and DDD.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Way2dry

#2
May 02, 2017, 04:46:04 AM
SjoGirl - This is such good news!  I am so glad for you and I hope you find improvement soon with your other issues.
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

araminta

#3
May 02, 2017, 01:11:30 PM
This is wonderful news, and will give all of us some hope! :)
Dry eyes (MGD), nose, mouth, occasional labyrinthitis,  dry skin , mouth ulcers, constant but fluctuating fatigue, IBS.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Omega 3 algal oil, multivitamins, Evolve eye drops, Xailin eye ointment,  moisturiser (Instituto Espanol 10% urea).

helloz

#4
May 02, 2017, 02:48:51 PM
Great to hear these updates.

Sharon

#5
May 02, 2017, 04:24:27 PM
I'm so happy for you SjoGirl!  :D
It's great to hear some good news from a fellow Sjoggie!
What do you believe has aided you the most in your remission?
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....

SjoGirl

#6
May 02, 2017, 05:14:48 PM
Thanks all, I'll take it for as long as it lasts!

Sharon things seemed to really turn around after I started taking Evoxac. I believe I am now digesting foods properly and obtaining the nutrients that I need from them. I also drink less water, I have in the past drunk too much, leading to low sodium counts.

Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Sharon

#7
May 02, 2017, 05:19:41 PM
That's a very interesting conclusion.
Enjoy- you definitely deserve this break after all you've been through!
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....

Carolina

#8
May 03, 2017, 05:49:02 AM
Dear SjoGirl:

Great news.  Gabapentin and Cymbalta have made my life almost pain free.  I'm withdrawing from Medrol, so have some night time discomfort, but so far so good. 

Finding the right combination is essential, and remission for you can be measured by testing.  For those of us who are sero negative and have other ways which our Immune Disorder attacks our bodies, remission isn't so easy to test. 

I hope I am in remission.  Remission for me means that my Immune Disorder is not attacking my organs/systems at the current time.  That would mean no further damage is being done.  I will find out soon, because without the Medrol, I will see if my Immune Disorder continues to reject my treatment (IVIG) or if my Immune Disorder no longer fights the very treatment which makes me healthier!

It is so interesting that we are constantly checking our bodies, seeking the right medications, and hoping for equilibrium in our lives and our bodies.   Most of us still have to live with the damage that was done over the years.  But finding balance is a joy.

Congratulations, it is so delightful that you have found some space in which to rest on your journey with Sjogren's.

Hugs,   Elaine

Female-Elaine,83-CVID-pSJS-WMD (Eylea)-COPD-Inter. Cys-PN-CAD-Osteoarth-SFN-Erythromelalgia-SIBO-PMR-Adrenal Insufficiency-Hearing Loss-Achalasia-Bacteriurea-Power Chair-IVIG Gamunex 50 gm-Medrol-Wellbutrin-Buspar-Gabapentin-Atenolol-Salagen-LDN-Lipitor-Premarin-Nexium-Om.3-Repatha-KLOR-CON-Maxide

quietdynamics

#9
May 03, 2017, 09:01:48 AM

SjoGirl.. this is wonderful news AND just in time for great summer weather. Makes so nice to be active, out and about.. rev-up activity level.

I have tried altering the combo of Cymbalt/Gabapentin I take.. yet it seems to always come back to the same level to be mobile and functional.

I always find that Springtime is when I feel best. Fresh air, cool nights and sun, activity/ability.

Enjoy..

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

A Mom on Spin

#10
May 03, 2017, 11:58:48 AM
So great to hear!

I didn't even know it was possible for Sjogren's to go in to remission.  Your body has been able to do something which we all aspire to!
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

jazzlover

#11
May 03, 2017, 01:32:02 PM
That's so wonderful!!

I'm a little confused though... which drug was in the trial??
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

irish

#12
May 04, 2017, 10:40:36 PM
Glad that you are having some relief and time to enjoy life more. Take it and run with it cause we take what we can get. Have a great summer. Irish
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