Like you, I been diagnosed with primary Sjogrens. I am glad that you have a well informed GP. I agree that there is insufficient well developed treatments specific to Sjogrens. There has been very little research on medications specific to Sjogrens. Most of the research is on Lupus and RA. That may be the reason. Until Sjogrens is better understood, we will continue to be "under" treated.
I know, even with all of the info on PsA, it is always excluded from arthritis based info. As you say, it’s Always RA.
We are having yet another blizzard here today. No wonder I had such a pain filled, sleepless night, and it was supposed to be in the 60’s today! UGh!
Going over the SS tips for survival, this popped up and I thought several of you
- Never feel guilty about seeking a second opinion, especially given the overlap and uncertainty with Sjögren’s.
You have taught me so much about Sjogren's, and my Internist tells me the same, that Sjogren's is so very strong in me. He reminded me that just because it is classified as 'secondary' does not mean it is not my worst disease!
When my Internist took me off Enbrel first of the year, I thought the worst to happen to me would be the spinal arthritis pain, but NO, my body felt as though it was burned and dried out with a blow torch! I think those 'pop bottle' glasses are in my future too! OH BOY! Now won't that be a fashion statement? HMP!
No, the Enbrel had actually really helped the Sjogren's. Like the Rheum says sometimes you don't know how much something helps until you stop it.
It was a bad flu that I could not get over that he took me off the Enblrel, UTIs are now unstoppable, and I fear IC is a play! You know, it just goes on, and on, and on!
I just cannot tolerate the MX or SZ, so not sure where we go now, I still don't think I have any immune system left! See the Rheum on 4-4, need to see DDS and Eye Doc, but who can keep up?
Hi I have been diagnoised with SS for more than 20years and recently had been doing some study on diet and SS and decided to go gluten free and sugar free and at the moment working on diary free, and I do feel a lot better, as I have found out that a lot of people with SS will " Sensitivity" towards gluten, and it may not show up in a test , an allergy it would, my joints are feeling a lot better not completely but enough for me to stay gluten free, sugar free,
MissMaggie said:
I have primary Sjogren's and while I don't get sinus infections, the tiniest of colds (which I now get very often) usually turn into bronchitis. And I find as well as you, Nomad, that most Doctors know very little beyond the dryness symptoms. For me, those are not my worst symptoms and were not what caused me to push relentlessly for a diagnosis. My worst symptoms are neuropathy in my face, fatigue, brain fog and overall body/joint pain. Needless to say, I had a few doctors brush me off as nuts and even the first Rheumy I went to insisted I couldn't have Sjogren's (even though I had a positive lip biopsy), because he said said Sjogren's doesn't cause those symptoms. Frustrating!
I honestly feel that for the most part (and I envy you people who have doctors that understand), we have to take our health in our own hands. Nomad, the best thing I've done for my Sjogren's is to go gluten free. I know it's a fad right now and I get a little embarrassed to tell people, it really has helped. If I cheat, (and do from time to time) I always get a flareup of Sjogren's - if I am careful about avoiding it, my symptoms are mostly mild and manageable. Something to think about trying. Best of luck.
Linda
Hi exjbnz!
I have to tell you, that I really admire all of you who can go gluten and sugar free! Those would be the very hardest things to totally discontinue! Now I have done some of the elimination diet with my DC, and though there were no tests done, there were no food allergies detected, no difference noticed. I DO have some issues with digestion, and take Spectrazyme, along with probiotics and that is a big help, but who knows what the future may bring!
I’m typing from my phone and can’t see the entire screen; my apologies if I repeat myself or put something in the wrong place. I’ve gone gluten free too and have BIG time reduced sugar, dairy and corn. It has reduced body aches and fatigue. I also dropped five pounds instantly. It was only hard the first few days. I’m buying more and more organic and drinking more and more water. The health benefits have kept me well motivated. I’m glad someone mentioned it as something that helps…thank you.
BRAVO! I give you both a standing ovation! This takes unwavering dedication and fortitude!
I just saw my new Rheumatologist and he said that many people with SS don't have Celiac's, but do have a sensitivity to gluten. About 18ish years ago I went on the Modified Elimination diet, and I had never felt better. It's a very strict diet, but worth it. You don't get sugar, gluten's, dairy, red meat (beef and pork), alcohol, soda - including diet soda, eggs, etc.
Here is a link to a simple Modified Elimination Diet:
http://www.healthdesigns.com/Elimination_Diet.html
Here is another one, but has a lot of good information to read:
http://global.oup.com/us/companion.websites/9780195371109/pdf/00_Mu...
I know, after looking at the web sites, you are saying to yourself, "What is there to eat or drink?" You'll be surprised at what you can do. I was. It's just the first week or so that is difficult. You get into the swing of things later, and find all kinds of recipes to use, and since everyone is going gluten free, there are a lot of products out there now that are gluten free. It's awesome!
My only problem, 18 years later, is I seem to have no will or self control it seems, and I REALLY need to get back on the diet to feel better. It's a lot harder now. My 2 grown children (still living at home. Help me! LOL) and hubby won't like a lot of what I make, so I would have to make 2 meals each time. But everyone in my family needs to lose weight. That is another discussion!
I hope someone can use the diet info.
Fascina
Thanks a thousand for the good info, and sound reasoning! I am much healthier in warm weather, and hopefully it's here! I eat more fresh fruits and vegetables, drink more water, walk much more, and hurt much less. Barometric pressure is a tough one for me, possibly worse than the car riding, my Rheum suggested I move to warmer dryer more even climate, and I told him that leaving my son and grand kids behind would be far more painful than any weather this area could throw my way! Now if they would only come along, time will tell...
I look forward to having a look at those links!
Kaz
Thank you. I’m approaching desperate. Is bi carb a powder? Forgive my lack of intelligence on this. How often do you use the saline spray? Do you use a special brand…don’t know if we are allowed to say here. Does it come in a can or a plastic container? How many glasses of water do you drink per day? Do you get any sinus infections now?
Thank you!
Thank you again, Kaz. Do you make a bottle of water with salt and baking soda and swish your mouth with it a few times a day from the same bottle? What kind of salt? Table salt? I just got back from the store and got the baking soda! Can you gargle with it? I have some Zicam throat spray and saline nose spray…so I am moving foward. Just need to make the mouth wash. Is it best to change that bottle every day? I’ve gotten paranoid of germs at this point.
Many thanks. I got the Rain mouth spray. Also, a nose spray with xylitol. Trying different things. Drank more water today. Many thanks, Kaz. I’ll keep you posted.
I would like to mention oil pulling for oral health. I started doing this, swishing coconut oil around my mouth for up to 20 minutes, over a year ago because of dry mouth sores. As long as I oil pull at least twice a day, I can control the soreness. And a side benefit has been cleared sinuses and almost the complete elimination of regular nosebleeds.
http://www.healthy-holistic-living.com/what-is-oil-pulling.html
Hi Felter,
I had to look it up! Never heard the term 'oil pulling'! Sounds very beneficial! Cleared sinuses to boot!
What about the nasal sores, coconut oil for that too, I guess, though I have successfully used Neosporin!
Thanks for adding this, great to know!
Wishing you well,
SK
OOOH, that sounds painful, Kaz! No, never!
My worst place is under the tongue and wearing a partial just aggravates this area! I don't always wear it at home!
I have a near completely blocked right sinus and am very upset by this. I also discovered nasal sores recently. Again, no one mentions Sj. S. I took a sinus X-ray yesterday. Flonase is not helping. I do have the the nasal spray with xylitol and it is soothing; although doesn’t particularly help me breathe better.
I have facial nerve pain after bad dental work. Trig. Nerve. Nightmarish pain. I use a compounded cream on my face. A tooth was pulled for no reason…the cream helps a lot. I’m beyond frustrated with all that has gone wrong this last 18 months or so. Appreciate the advice here. Would love to get this sinus thing in better shape. I see the Ent again mid week.
Just imagine what we've learned since this discussion was posted only about 20 days ago!
Dear Kaz,
Sending healing thoughts your way. I'm pulling for you!
Wishing you well,
SK