First visit to Rheumatologist- diagnosed with Primary Sjrogens

[Kadiddle]

My visit with the Rheumatologist went very well. She was Great! It is Dr. DeLea in Portland. She wants to see me again in 3 months. Then, if I would prefer, she'll transfer me to one here in the Spokane area. She said the wait won't be so long because I have a diagnosis now.
She put me on Plaquenil. She stated that it may not help with the dryness symptoms for my mouth or eyes, as the  studies show this is questionable. However, she stated it will definitely help with the joint pain and stiffness, fatigue, and my skin issues! I am so excited to see if it helps with the skin especially. I have had chronic rashes for probably 20 years without a diagnosis. She said they are definitely auto-immune.
She did tell me it can take up to 3 months to get any relief with the Plaquenil. What's 3 month's after 20 years!
I hope everyone is enjoying the holiday festivities! We did a western Caribbean Cruise and it was delightful!

[Wal]

Happy to hear that hope is on the horizon for your symptoms management

[Kathy57]

Kadiddle,

So happy you received treatment!  It was a blessed day for me when I was finally diagnosed.  Stick with the Plaquinil because it does take a while for it to kick in.  It made a big difference for me.

I'm wondering why no one prescribed Pilocarpine for your dry mouth?  I take Evoxac  and it is a life changer for me.

Wish I went on a Carribean Cruise!  I've had a house full of 6 extra adults, four grandchildren, and 2 dogs!  I'm exhausted from cooking and cleaning and dealing with toddlers!  Now that Christmas is over, I can finally relax and take a breath. They all left and I heard "blessed silence!"  😂

Feel better soon!

Kathy

[Kadiddle]

Kathy57- That's one thing about grandchildren! You love it when they come to visit, you love it when they leave! Lol!

The Rheumy talked about the Pilocarpine. She said she had more complaints of the side effects then the positive effects. She said I could try it if I liked, but she was more inclined to start with the one medication and add to it as needed. I was agreeable just because I am having a hard time with needing medication to begin with. But I am going to discuss both the Pilocarpine and the Evoxac with her at my next visit.
Do you take both? What side effects have you noticed?

[cccourt1942]

Hi there,
    The dx is the proverbial double edged sword:  great to know, dread to realize! 
     I agree with Kathy about dry mouth treatment.  I was Rxed pilocarpine...but a megadose.  It absolutely tore my stomach up.  I took it for about 3 or 4 days before realizing I was going to die of dysentery like symptoms.  Before I abandoned it, I checked on the side effects.  I decreased the amount to about 1/4th or 1/5th of Rx.  I hated giving up the feel of fluid in my oral cavity.  I used Xylimelts during those days, weeks, and months of building up my tolerance.  I was not on this site when I began my own regimen.  By the time I was here, I was probably up to about 10 or 15 mg per day.  THEN I learned about the other meds.  I already had the various doses of the pilo, (mg size) and continued that direction.  In the end, it took me about 1 1/2 years to get to 25 mg per day.  Periodically I'll drop down to 22.5 mg if I find myself drooling too much at night.  I can go about 2 or 3 weeks on that dosage before upping again. 
      Anyway...your rheumy is correct regarding the side effects.  The relief is just exactly as Kathy describes tho. In the meantime, if your mouth is bone dry (I describe it as sandpaper dry) remember your esophagus is that dry, your tongue is that dry, and your teeth are that dry.  I can recommend the xylimelts.  I carry them with me now.  Nothing is more aggravating than to be in a group and you've used up all your saliva.  You literally can't talk.  So I pop a xylimelt.  I couldn't work any longer after my dx.  It was rough before I stopped.  But it was hard.  No explanation, so just kept plugging along. 
    and btw: Your oral dryness may not be as advanced as some of ours are.  This might not impact your life as much as your eye dryness has.  My eye dryness was there for about 20+ years before the mouth symptoms advanced --and rapidly.  Just means it was there, but not as bad as it finally got.

     Best to you in managing your symptoms.  You'll do well.  I can tell from your input here.

c3

[Pete0211]

I'm on my 2nd month of cevimeline (Evoxac generic) after 3 months of pilocarpine. I've had a much more "natural" experience with the Evoxac as compared to pilocarpine - no excess saliva, no sweating side effects (especially at night), and a steady amount of moisture through the day (vs. a couple of hour deluge vs. several hours of dryness with pilocarpine).

I don't know if that's usual, but imho I'd see if you can start with evoxac / cevimeline first.