Author Topic: Does Sjogren's ever go into remission?  (Read 6676 times)

SassieCat

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Does Sjogren's ever go into remission?
« on: April 06, 2009, 11:22:04 PM »
I'm new here and was wondering if SJS ever goes into remission.  I have had fibro for 9+ years and have had it go into remission once for 6 months.  I believe that much of my fibro symptoms have been more related to SJS but it was never diagnosed until 5 months ago. 

SassieCat

irish

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Re: Does Sjogren's ever go into remission?
« Reply #1 on: April 06, 2009, 11:34:00 PM »
Sassie, Anything is possible, however, if we have sjogrens long enough without treatment it can damage organs and make problems become long standing. I have had sjogrens for at least 40 years and it started out with the joints and fatigue and then went to the dry mouth(but not a very bad dry mouth) and eventually I needed to have all my teeth pulled. More and more things popped up but I was not diagnosed until 2003.

I think the important thing is to take care of yourself and see that you get started on Plaquenil and Prednisone and then a DMARDS (Imuran, Cellcept, Methotrexate,etc ) which are the stronger drugs. All these drugs are to stop or slow the autoimmune attack on the body. Doctors who are informed are treating patients earlier with the stronger medications to slow the progression of autoimmune disease.

Also, remember that when you have one autoimmune disease other ones will also pop up without being invited. People with sjogrens often have Hashimotos or thyroid autoimmune disease which can really make you miserable with fatigue, aching and depression. Also, many times people with Rheumatoid arthritis have the sjogrens also. Sometimes hard to tell which one came first. Good luck. Irish ;D

ohiolady

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Re: Does Sjogren's ever go into remission?
« Reply #2 on: April 07, 2009, 08:23:01 AM »
Sassie,

I've had Sjogren's for two and a half years.  I was so sick in the beginning with a myriad of symptoms that I won't bore you with and extreme dryness.  After the first year and a half, I started to very gradually feel better and my dryness has improved some.  I take Evoxac and Prilosec and that is pretty much it.  My rheumatologist has not given me Plaquenil because I have a lot of stomach issues (compliments of Sjogren's) and she said all meds have side effects and as long as I am okay we are not going to add anything to the mix.  I might add that I'm one of those whose blood work has thus far looked like a totally healthy person.  I have antibodies for Hashimotos but my thyroid has not failed.  The endocrinologist tells me I have a 40% chance that it will.  Per rheumatologist instruction, I take 3000 mg of fish oil and vitamin d.  I see physicians from the Cleveland Clinic.  I've found rest to be the most important thing I can do for my health.  I do not set unrealistic expectations for myself.  Anyway, I say all of this to say, you can feel better, don't give up. 

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 59

JannaLee

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Re: Does Sjogren's ever go into remission?
« Reply #3 on: April 07, 2009, 09:40:39 AM »
Sassie,

According to the stuff I've read, Sjogren's can go into remission and apparently does for lots of people. (Those are the folks that do not post here because they are out resuming their lives!) 

Like Anna describes, I'm thinking Sjogren's tends to wax and wane and can definitely be a bit less terrible if one is careful about rest and not overdoing.

I have a friend who's grand mother had Sjogren's that was apparently real mild, all she needed was a hard candy to suck on every now and then....so what's my problem?!  I'm wondering if my friend really knows as much as she thinks about her grandmother.  If the lady had such a pain free case how the heck did she get diagnosed??  But maybe....her grandmother started with a bang (which necessitated medical investigation and diagnosis) and then went into remission?

I wish I knew.

Katybarstool

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Re: Does Sjogren's ever go into remission?
« Reply #4 on: April 07, 2009, 03:24:07 PM »
Hi Sassie

I agree with Janna, the folks who are in remission are probably too busy to post.

My personal experience has been of flares and then good spells, but gradually I'm realizing that I will never be the person I was 4 or 5 years ago. I was 47 then, and though I had had symptoms that were probably sjogren's related for years, eveything suddenly seemed to happen at once.Within a couple of years I had developed asthma, bronchiectasis, arthritis, Sjopgren's and this year, Raynauds. I also had two minor gyny ops, followed by a full hysterectomy and subsequent surgical menopause, so I have kept the medics pretty busy.

My current problems are bowel ones, with a rectal prolapse, which I'm hoping to have repaired within the next couple of months. Hopefully, I will then be able to see the light at the end of the tunnel.

Try not to dwell too much on the sad posts on here. There are lots of lovely people who will advise you, and listen when you need them to. Many of us who are regular posters need support, but can also offer you friendship and empathy, and will celebrate with you when you have a remission and are able to do the things you would like to.

Hugs
Kathyx

 

eyeamdry

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Re: Does Sjogren's ever go into remission?
« Reply #5 on: April 07, 2009, 04:27:46 PM »
My rheumy's PA said that if you're under control with meds, you are indeed in remission.  I'm sure there are different measures of wellnes.  But, there is always hope when you're feeling the worst.  Lucy

SassieCat

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Re: Does Sjogren's ever go into remission?
« Reply #6 on: April 07, 2009, 05:06:04 PM »
Thanks everybody for all the replies but I am still confused about SJS and it's onset with me.  I have had the Hashimoto's disease since I was in my 20's and I'm 51 now.  The endocrinologist dx me with Fibro about 9 years and I'm 51 now.  I always thought it was pretty cool as I don't get sick very often.  I can get over a cold in two days time and I don't really get the flu either.  But after the FM I've been to many other doctors who have found out that I also have idiopathic cardiomyapathy, osteo arthritis in my spine, spinal stenosis, back surgery, I've had a hysterectomy after almost bleeding to death twice, hemocromatosis (iron poisoning), glaucoma and now this.  I know I'm leaving out other things wrong with me but I just can't remember them right now. 
I have neuropathy pretty severely and have had scares with my liver enzymes going amiss.  The rheumy that was finding out all that was wrong said I was border line for lupus and RA but then he retired and moved to TX.  The new rheumy took off from where he left off and dx me with SJS.  I've had alot of trouble with breathing, dry eyes, and a sudden problem with cavities and broken teeth.  I've never had problems with my teeth since I was very young. 

After reading many of the posts here I relate to the tingling, burning, and pain symptoms very well.  I have been given the plaquenel (generic version) and the pain was getting better until I pinched my sciatic nerve and I've been going downhill since then.  Some days all I want to do is sleep, and sleep more.  I just can't seem to really wake up and when I get up and move about within a few hours I am back in bed for a long nap again.  I'm cold have been having alot of migraine headaches again and just feel like I am falling apart all over again.  Thus my confusion, will it ever get any better or go away or is this as good as it gets?

Maria3667

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Re: Does Sjogren's ever go into remission?
« Reply #7 on: April 07, 2009, 05:40:27 PM »
Hi Sassie,

The moment I think I've got things neatly under control, it seems I've deluded myself.

Last week I forgot to buy new vit. C. I take 3 grams of this on Rheumy's advice. After just 4 days I contracted a cold which turned into a nasty flu.... This often happens when I neglet my vit's.

I've had Sjogren's for 6 or 7 years now and it has not gone into remission.
But the dryness has improved some what with a bunch of vit's, oils & Salagen.

Punctual maintenance is of the upmost importance, is the lesson I'm learning over & over again.

Best wishes,
Maria
46, F. Lyme's Disease (1998), Primary Sjogren's & hypothyroidism (2003), DES-daughter, anxiety disorder.
Quetiapine, Livial, pilocarpine, natural thyroid hormones, supplements.
Dry mouth - dry eyes - dry skin - cherry hemangiomas - macules - uterine fibroids. Allergies: nickle, methylisothiazolinone

MaryBee7

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Re: Does Sjogren's ever go into remission?
« Reply #8 on: November 30, 2012, 04:46:56 PM »
Irish, I am so grateful to read your response to this question, even though I just now saw it after posting so long ago.  My rheumy doesn't think I should be "feeling as badly" as I am on a regular basis, but it was 5 years of heck before diagnosis and about 20 of weight loss/gain and some nuance type symptoms for 20 years.  It is wonderful to know others understand.

Joe S.

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Re: Does Sjogren's ever go into remission?
« Reply #9 on: November 30, 2012, 06:04:46 PM »
A few months ago I would have said no. Now I would have to say a strong yes. I have have been wearing my mumps scarf at night. This helps to keep me moist. If I do not wear it, I go dry.

The supplements that I take also seem to help.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve
Reiki, reflexology, meditation, electro-herbalism

Styx

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Re: Does Sjogren's ever go into remission?
« Reply #10 on: November 30, 2012, 06:18:38 PM »
If remission means improvement of non-sicca manifestations, I would say you have a good chance of controlling these manifestations with medication or perhaps achieving a spontaneous remission.

If remission means improvement of sicca manifestations, I would say it's definitely not going to happen spontaneously, and it's very unlikely to respond to treatment. With that said, some peoples' sicca symptoms improve with time for reasons that are poorly understood (possibly due to neuropathies, etc.).

I know the latter is hard to hear, but the good news is that Sjogren's typically has an excellent overall prognosis.

Styx
Male in 20s with Sjogren's (sicca pretty much everywhere).
Severe upper and lower respiratory symptoms unresponsive to corticosteroids & MTX. AZA fixed that thankfully, but the sicca continues to progress :| though RTX has helped considerably.
Mild Crohn's disease that I don't even notice anymore.

Ark mom

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Re: Does Sjogren's ever go into remission?
« Reply #11 on: November 30, 2012, 09:46:20 PM »
I think I had my first flare in my twenties.  I felt weird and tired and a little sick for several months then was pretty much okay for the most part of ten years.  I think the dryness was progressing ever so insidiously, and so I don't think I could say that I was ever in complete remission but pretty close, no systemic symptoms.  I was just having a very mild form of the disease.  I didn't have any more real issues until about almost 1 year after I had my first baby.  Whammo! 

I have hope and faith that with the right drug cocktail that I will go into remission, and if not that, perhaps a quasi remission.  My sicca symptoms may never diminish due to damage being already done, whether it be nerve damage or gland damage or receptor damage or whatever. 

Let us all hope for the best!  Here come the pom poms!

41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

brooklyntina

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Re: Does Sjogren's ever go into remission?
« Reply #12 on: December 01, 2012, 09:50:49 AM »
I believe it took the perfect storm of stress/infection and predisposition to get me here and that it can ABSOLUTELY go away. No one knows that much about AI issues. But mine already comes and goes in intensity so I'm sure it can go. Unfortunately I think it might include drastic lifestyle/ stress reducing and taking it easy type changes. Also I want my mercury fillings OUT.

We have been exposed to so many pesticides, hormones, genetically modified foods, BPA's, and electromagnetic whatevers in the past 50 years- it's amazing more people aren't sick!

We can do this! :)!!

prunella

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Re: Does Sjogren's ever go into remission?
« Reply #13 on: December 01, 2012, 07:20:37 PM »
I feel like I am in remission (knock on wood) for the first time in many years.  But remission is a relative concept. 

I sleep when I 'm tired and don't push myself like I used to. My kids are grown, so I have fewer responsibilities.   Do I have the energy I'd like? No!  And I do not dare to stop taking plaquenil, but I have been fortunate not to take other meds.  --except that I recently had cortisol levels checked and have begun to take DHEA. Energy is improving. 

My Traditional Chinese Medicine (TCM) naturopath says inflammation of gut and/or joints usually goes hand in hand with sicca.  Gluten and dairy trigger inflammation of all types. I avoid them.
This was a hard lesson for me to learn.  I usually measured foods by how my gut felt, not seeing the connection to fatigue, heaviness of limbs, achiness, dryness. 

I agree with Joe S. and eyeamdry's rheumy that if your meds and other "accommodations" are in place, you may achieve a state of remission.

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.