Author Topic: Has anyone been symptomatic free for at least a year?  (Read 10978 times)

andreamarie

  • Newbie
  • *
  • Posts: 25
Re: Has anyone been symptomatic free for at least a year?
« Reply #30 on: March 26, 2014, 05:41:05 PM »
Good point! I worked for the Crohn's & Colitis Foundation for ten yrs and told members I had a then twenty year remission but have never gone over to C&C board. I'm going to do that tomorrow.

Also the interstitial cystitis board although I do post there because of pelvic floor dysfunction.

I know these diseases are not Sjogren's but trust me; remissions are very rare. I had to show my dx report to urogynecologist; fortunately in the old days they did the gold standard test.

I used to have to show surgical report of Crohn's to doctors but now they believe me.

My eyes did go into remission. I was in a study using Omega 3 supplement and it worked. Initially I wasn't on them and it didn't work but when I crossed over it did. I didn't respond to restasis. My mouth is always a little dry. For years I wondered if I really did have SS but then my maternal aunt developed same symptoms.

brooklyntina

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #31 on: March 26, 2014, 07:22:26 PM »
My mom had stuttering graves disease her whole life. It wasn't diagnosed until recently because it came and went. They JUST started understanding that it can do that- come and go! But the point is, IT CAN GO! That's what the hematologist said about my lupus anticoagulant. It comes and goes- that's what it does!

Hope everyone is having a good evening!

andreamarie

  • Newbie
  • *
  • Posts: 25
Re: Has anyone been symptomatic free for at least a year?
« Reply #32 on: April 08, 2014, 03:58:12 PM »
Interesting about Graves disease because my late mother had it when she was in her twenties; around 1940. She was treated for it and it WENT forever. She lived until she was ninety three.

LucyD

  • Hero Member
  • *****
  • Posts: 592
Re: Has anyone been symptomatic free for at least a year?
« Reply #33 on: April 08, 2014, 05:05:46 PM »
I am filled with gratitude for everyone here and this forum and for everything posted on this thread.

I have to believe there is always a chance we can achieve a state of being at least close to symptom free for a good period of time. Maybe I am naive. I had a good nine months of more energy and less pain when I first started on Plaquenil, but then I got worse.

My biggest problems are the pain and the fatigue. I have the dryness but not as bad as many.

Angeldancer, good to hear from you. Holding you in light and healing.

Love and healing to everyone here
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

angeldancer

  • Hero Member
  • *****
  • Posts: 592
Re: Has anyone been symptomatic free for at least a year?
« Reply #34 on: April 08, 2014, 08:10:18 PM »
Thank you LucyD.  I will take sjogrens any day over these cancer treatments.  I am trying to hang in there but it seems to kill you faster.  i want to enjoy my life no matter what.  I want to dance and sing and travel.  Cancer treatments keeps you in the bed or the hospital.  There has been no middle ground for me.  I want to be symptom free cancer free.  I want to love and give more.

Peace and blessings to us all
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

DryGuy

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #35 on: April 09, 2014, 05:29:06 AM »
I had someone PM me who is relatively young (30's) and told me that after taking plaquenil he felt pretty normal, works full time and is very active. He isn't active in the boards anymore tho.  I'm trying to be hopeful and I know they are researching SjS more and more even tho papers don't come out everyday. But people are beginning to understand the huge quality of life issues with this disease as well as the less understood sequelae such as the CNS and PNS involvement.  Besides it's better for the "community" if everyone is able to work and be productive than be ill and unable to work and have to collect disability.  I know I'd rather work and be productive, if also like my moisture back to normal  :'(

Tivia

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #36 on: April 10, 2014, 08:46:52 PM »
I guess you got a point.  Where is the research so we can get cured?  Who is caring about us in the medical profession?  I will stay positive that one day someone will come up with how to get us symptom free.

I have to comment on this. Let me ask each of you a question, did any of you care or even know what these illnesses were before you got sick. I will be honest here and say I didnt know much and it never crossed my mind. I assume its that way for most of the world, which is why there is no big push to cure a lot of things, no one really cares till it happens to them. So there is no interest and no push from the public or major corporations to do much in research for little known or cared about illness. Its a sad fact, most dont think about anything that dont affect them. But once you get sick or someone you love gets sick then your perspective changes, and we see how much of society lives in small circles.
« Last Edit: April 10, 2014, 08:52:42 PM by Tivia »

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: Has anyone been symptomatic free for at least a year?
« Reply #37 on: April 11, 2014, 06:56:22 AM »
Tivia:  this is an interesting query.  It's one of the reasons I have "friends" ask "how did you learn about this", "who has this", "where have the people been all these centuries who had it", and other doubting questions about Sjogren's.  They treat this like it's the disease du jour.  Really..do we need to defend a NAME for our symptoms?  I didn't know there were adult and child leukemias until my 32 year old brother was diagnosed with an adult type leukemia.   It didn't make it a questionable disease.  My niece recently died four years after being diagnosed with inflammatory breast cancer.   Just because it isn't well known doesn't mean it isn't life threatening.  Hope you get my gist because I could add at least 5 more examples.  We have  a license to drive, so we have to know those laws....and so forth and so on.  BUT?  How can we possibly get on the band wagon to push for a cure for something we didn't know existed?  I am old enough to have been an early supporter of campaigning (not for a CURE) for a CAUSE of autism.  It impacted my profession.  Here I am over 40 years later...and really..NOTHING is known. 

What bothers me is with the millions of people walking around positive for SjS that there is so little information out there.  You have to HAVE SjS to get interested in it.  I have ONE friend who has researched SjS on my behalf.  When we visited about 10 days ago she was so dear and attentive to me.  I have one more friend whose daughter is a dentist.  The daughter informed her mom (my friend) about the condition's severity.  These are the ONLY two people in my world who actually know Sjogren's is real and serious.  I don't expect people to have fundraisers for awareness, or to give me added attention, etc.   I only want a certain amount of understanding.  A minimal amount of understanding.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

litliwlowa

  • Hero Member
  • *****
  • Posts: 1780
Re: Has anyone been symptomatic free for at least a year?
« Reply #38 on: April 11, 2014, 02:39:43 PM »
Quote
You have to HAVE SjS to get interested in it.
Or even be symptomatic enough to go looking for what it MIGHT be. I had never even heard of Sjogrens ever. It was actually my Endo who suggested I might have another AI under the radar that was affecting my thyroid levels in 2010. But no suggestion as to which one it might be.

Then dots connected that MAYBE after dry everywhere set in like a bull in a china shop in 2012 and basically my body systems were going nuts that I best be looking online to figure out what was going on. That is how I found out about Sjogrens, keying in symptoms and VOILA. Then I asked Endo if he could run the ANA, SS-A and SS-B and he directed me to PCP. I asked her to please run those tests. She referred me to Rheumy without running any tests with a preliminary diagnosis of scleroderma (or some other connective tissue thingy) and SICCA.

I fired that PCP actually. For 4 + months, I had been in and out of ER and Urgent Care. I even followed up with her every time and she would NOT stop talking long enough to listen and actually LOOK at me until finally I messaged her as I had zero instruction on how to manage out of nowhere spiking BP (over and above the DRY issues) and I couldn't very well RX myself and she being MY doctor needed to step up and ACT like a doctor.

Rheumy thankfully started treating me for Sjogrens right away. His position on that remained the same thankfully, although eye doc did get positive findings on tests. Then of course I have thread running on teh recent positive finding on the IMMCO test. Rheumy's assistant must have thought I was nuts being so happy to be finally VALIDATED in a way that my other specialists would ACCEPT as valid diagnosis.

But what really "chapped" my bum??? (pun intended) Sjogrens was first described in 1892. Then in 1933 a doctoral thesis was published on this by Henrik Sjogrens, then in 1950 after extensive research, an essential paper was published (all per Wikipedia) and...well if so much extensive research was done back then...

and here we are in 2014???????? And most, not all, but most of my doctors have never even heard of it?

As for a year without symptoms, oh that would be so delightful. I'm greedy - I want two years symptom free. As it will take me a year to adjust to being symptom free. The second year to catch up on my bucket list.
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

DryGuy

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #39 on: April 11, 2014, 05:39:09 PM »
the psych Nurse Practitioner I see never heard of it and she said she's been in nursing for 35 yrs.  I was a bit disappointed in her, but I suppose she's only been in psych nursing. 

litliwlowa:  like someone said before ppl only care about or know about what touches them directly.  Venus Williams downplaying it and making it seem like a "who cares" illness makes ppl care even less.  RA gets HUGE amounts of press and tons of research but people can see that it can be deforming.  CFS gets just about none which is what sjogrens gets.  I'd like everyone in the world to have to deal with the SICCA everywhere for a week, they'd have a renewed outlook.  SSF needs commercials, but I don't think they have the funding for that.

I also don't know who started the idea of it just being dry eyes and dry mouth.  I've had this thing for less than 6 months and I have more dryness than just those two places...

Even if a Dr doesn't know what sjogrens is(there are so many diseases one person can't be aware of every single one), it wouldn't take them but 2 minutes to go to an online medical resource and type in dry mouth dry eyes and they'd see: medications, sjogrens, diabetes and thats about it.

litliwlowa

  • Hero Member
  • *****
  • Posts: 1780
Re: Has anyone been symptomatic free for at least a year?
« Reply #40 on: April 11, 2014, 05:52:06 PM »
Quote
like someone said before ppl only care about or know about what touches them directly.  Venus Williams downplaying it and making it seem like a "who cares" illness makes ppl care even less.  RA gets HUGE amounts of press and tons of research but people can see that it can be deforming.  CFS gets just about none which is what sjogrens gets.  I'd like everyone in the world to have to deal with the SICCA everywhere for a week, they'd have a renewed outlook.

So true about ppl only knowing or caring about that which directly affects them - more often than not, as there are exceptions to that albeit very few.

I am so glad you mentioned Venus downplaying it. I'm not into idol worship and her "coming out" about Sjogrens and DOWNPLAYING it as tho it was a mere nuisance does more harm than good. If she wanted or needed to keep the impact on her career under the radar, in my view, far better she had kept it private. Just my opinion.

As for everyone in the world having a week of SICCA? Nope I disagree. Should be a MINIMUM of 30 days to get a TASTE of what it's like. A week of sicca is a minor inconvenience compared to a month.

Oh, and um it's common to be dry in other places too!!
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

gold55

  • Hero Member
  • *****
  • Posts: 862
    • GoldenLoves
Re: Has anyone been symptomatic free for at least a year?
« Reply #41 on: April 12, 2014, 04:38:01 AM »
I must say I am very disappointed in Venus W.  Also, SICCA sucks big time but those of us who have joint and muscle pain.....along with this awful dryness.....I think I would be OK with the SICCA only!  RA is so painful but having SJS is like having a double whammy!!  Actually I would just be happy if one thing quit....maybe muscle pain.....then I could deal with SICCA and my joints!  I feel for everyone of you out there with your personal struggles.  I have made the difficult decision to leave my good job Nov. 1st because I can now see how stressful it's become and how I seem to stay in a constant flare.  I need some time to relax and decide what my last quarter of life will bring....not scared....just relieved  ;)
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

angeldancer

  • Hero Member
  • *****
  • Posts: 592
Re: Has anyone been symptomatic free for at least a year?
« Reply #42 on: April 12, 2014, 07:30:48 PM »
Our struggles only get magnified when doctors do not care to help.  Some of these rheumies say be glad we don't have lupus.  I want to scream do you understand Sjogrens, EVIDENTLY NOT!  Thank God for those that will take our fight to conventions and speak frankly about our multiple conditions because of this AI. 

eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

cactus

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #43 on: May 31, 2015, 12:01:30 PM »
Yes, my rheumy has said be glad its not lupus as well. I let him know my symptoms (13 in all) and is only interested in the most frequent one.
For over the past year I have changed my breakfast to having a fruit smoothie (any 4 or 5 fruits to 200ml water). This has been really beneficial for my skin and energy levels and I feel so much better. Perhaps I was running low on vitamins but I intend to keep this up.
A word of warning though, don't over do it as the results are bit purgitive!
Also, I have been replacing drinking tea with just water as I feel this is easier on the system and getting hydrated in the morning also helps.
Overall, I feel my symptoms are less severe now, but I know I haven't fully beaten it.
Hope this helps somebody.

way2dry

  • Guest
Re: Has anyone been symptomatic free for at least a year?
« Reply #44 on: May 31, 2015, 01:48:32 PM »
I was diagnosed in 2013 and my symptoms have only gotten worse.  Remission is only in my dreams.