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Living With Sjogren's / Re: The joy of a great Rheumatologist!
« Last post by Kathy57 on January 25, 2020, 09:09:22 PM »
Elaine,

So glad you found a good doctor!  After everything you have been through, you certainly deserve one. 

I love my Rheumy, but he has just gone part time in preparation for retirement.  He has been trying to find a doc to replace him, but so far no luck.  I don?t know what I?ll do when he retires.  I?m an hour from the University of a Iowa, so perhaps I?ll seek a referral.

A good doctor is a real gift.  Wish you the best!

Kathy

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Living With Sjogren's / Re: Questions about relapsing/remitting symptoms
« Last post by Joe S. on January 24, 2020, 03:54:09 PM »
I was in remission on the most serious symptoms for some time. Back in December I came out of remission for 3 bad weeks. I am back in remission now.
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Hi, Joe.

The move is everything I hoped for.  I'm off to the pool soon for an small water movement class.  Warm water, bright sun, supportive staff.

I play bridge three nights a week and scrabble three afternoons a week.  And there are socials, trips to art museums and the symphony, as well as much much more.

Lots of food choices at a restaurant style dining room.

https://www.kiscoseniorliving.com/senior-living/nc/cary/woodland-terrace/

We live at Woodland Terrace is Cary, NC.  The link may be taken out since it is a 'sales' sort of link.

Regards, Elaine
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Living With Sjogren's / Questions about relapsing/remitting symptoms
« Last post by Deseree on January 23, 2020, 10:37:58 PM »
Hi guys, it's been a while since I posted, mostly because I felt that being on these boards was making my anxiety worse, so I avoided them for a while. I have since seen my rheumatologist many times, and my bloodwork has been repeated. Interestingly,  with the exception of my very mildly elevated results on my first early-sjo test, everything since then has been negative. My doctor said that she doesn't always trust results when they are that borderline, but since I had such bad symptoms, she was reluctant to change my diagnosis. Also interestingly, my symptoms completely resolved for about one year, until today. My dryness came back suddenly and out of the blue while I was speaking on the phone today. After a year of being symptom free. Just curious, has anyone here had this kind of remission? Is it possible that this is something else like stress or anxiety? I was under the impression that Sjogren's almost always stays the same or gets worse. I'm very grateful for the relief I've had, but now I'm feeling the fear again as I wonder what the future holds.
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Living With Sjogren's / Re: Stress/Anxiety and Dry Mouth
« Last post by irish on January 23, 2020, 06:05:24 PM »
I read over some of your  oats again. I do't think a person can blame dryness on anyone thing. I have been dry for over 40 years. Some times miserable and other times not so bad. I always keep water next to my bed and I have sucked on sugar free cough drops for much of this time....even at night and it helps.

I am dry enough that my teeth got cavities and rotted,abscessed and ended up getting rest of them pulled in 2004 and got full dentures. I could not imagine that all the dentists I went to did't pick up on the dryness. Me thinks they liked doing the dental work and making money. The last dentist I had was great and really worked hard to sort rings out....and then I got diagnosed with Sjogrens after all those years. When I went to this dentist I had 17 cavities.

One thing you may have to do is to concentrate on one health issue that is nothing you and try to get that taken care of. Many of us on this site have had to just hold our breath and slowly go through new doctors until something is discovered. I started with illness in 1964 and diagnosed with Sjogrens in 2003 and then 4 more autoimmune diseases after that. Sometimes we thing we will die but we just hang in there and gain patience and character. Much of the time there is no hurry to this journey....The docs can't fix us if they have no clue what is wrong with us. Good luck and keep us updated. Irish
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Living With Sjogren's / Re: Stress/Anxiety and Dry Mouth
« Last post by Alan on January 23, 2020, 12:51:20 PM »
I actually did have high dose steroids when first getting this, as I suspected a really bad auto-immune disease.

When I was at 80 to 120mg dosage, all of my symptoms seemed to dissipate, including the dry mouth.

When I got an intravenous shot of steroids at the Hospital, the first thing I noticed is my dry mouth went away.  My Rheumy said it was the saline solution, but I suspect it was the steroids themselves, but she could be right.  Anyone gotten saline intravenously and notice a dry mouth improvement?

I am now off the steroids (prednesone) for a month.  As I tapered off them, the dry mouth got worse little by little, so in some way they helped.

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Living With Sjogren's / Re: The joy of a great Rheumatologist!
« Last post by Deb 27 on January 23, 2020, 10:28:59 AM »
Sorry about the polymyalgia rheumatic but very happy that you found a great rheumatologist! You deserve it!! We need peace of mind and a doctor we can trust. We have too much to deal with otherwise.
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It is almost a year, "How are you two doing now?"
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Living With Sjogren's / Re: The joy of a great Rheumatologist!
« Last post by irish on January 22, 2020, 10:01:19 PM »
I will need an immunologist soon or maybe a rheumatologist as my rheumatologist retired and I have had to change infusion centers after 13 years and one month of infusions there.

Hard to find good doctors. Thankfully my neurologist can order my IVIG for my Myasthenia gravis. Don't know who is going to want to deal with my other 4 autoimmune diseases though. Good thing I am 77 years old. Won't have many years left to worry about my health...I would think!!! Take care all..Irish
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Living With Sjogren's / Re: muscle and tissue pain help
« Last post by jazzlover on January 22, 2020, 04:42:59 PM »
. polymyositis brings a raised esr and I don't have that.

More correct to say that a high ESR MAY INDICATE Polymyositis.
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