New Rheumy says it's Sjogren's

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/6/2010 1:45 PM (GMT -7)   
Well, after 4 years of diagnosis limbo, my new Rheumy at the Emory Clinic in Atlanta believes that all my issues are Sjogren's.  It's hard to believe that the incredible amount of joint pain, the rashes, the hives, the fatigue, the unbearable migraine headaches, that everything could come from something that mainly attack the moisture producing glands in the body.  I know for sure I do have Sjogren's, because I've got all those syptoms now this summer worse then ever.  I've been useing a Dry eye relief drop several times a day now, drinking water all the time now for dry mouth, vaginal dryness that is sometimes painful, there is even some weird facial neuropathy, like if I rub my nose, I feel like I just wiped it with a big wad of cat hair.  All this stuff is crazy.  The Rheumy even said that Sjogren's is so nutzy that it can make your other AI bloodwork show false positive.  It can make a RF or antiDSDNA look postitive when it's not, so those tests for me are now null and void and we now have to go by symptoms and physical findings alone to track if there is any progression of any other diseases.  He doesn't believe that I have anything else going on at this time.  So it's like my PCP told me, It won't kill me as quickly like Lupus, I'll just feel like crap a whole lot longer.  None of my treatment changes, I'll still remain on the Methotrexate and Plaquenil and everything else.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/8/2010 8:23 PM (GMT -7)   
What's in a name?

If the symptoms are the same and the treatment is the same, I'm sure you don't feel any better!

I'm not as familiar with Sjogren's as I am with Lupus, but it is my understanding that Sjogren's more or less can attack anything and everything just like Lupus. Crazy, huh?

Well, the most important thing is that you have a Dr who believes your symptoms and is willing to treat them.

Hope you can get some of this under control soonest,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


ErinG
New Member


Date Joined Jul 2009
Total Posts : 13
   Posted 7/17/2010 9:49 PM (GMT -7)   
Hi Jennifer,

Have you been to an ophthalmologist to have your dry eyes checked? I have punctal plugs in my tear ducts and I use Restasis twice daily, both of which have helped immensely with my dryness. You also might want to ask your rheumy if you can take Evoxac or Salagen for the dry mouth. I don't take either of these myself, but I've heard from other Sjogren's sufferers that they sometimes help.

I know what you mean about the joint pain and the fatigue. For quite a while before I was diagnosed I had a lot of trouble getting out of bed every day and I would just get back in it as soon as I got home.

I think as long as your rheumy continues to monitor your symptoms and adjusts your treatment you should be in good hands. It seems lately my meds are changed almost every time I visit my rheumy, and I go once a month!

Best of luck :-)

Erin
29 year old female (full-time accountant/part-time student)
Dx'd 2009:  Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon
Rx:  Cellcept 1000mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 15mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin 
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/28/2010 8:32 PM (GMT -7)   
Saw the new Rheumy today and I'm flaring big time.  Bad joint pain and fatigue like a train hit me.  We're uping the MTX to 20mg a eek and the pred to 10mg a day for a while.  Hopefully we'll kick this flare in the you know what pretty soon.  Meanwhile I feel utterly useless and it's driving me nuts.  The dishes from  last night sit all day until right before dinner when I have to clean them up so my poor DH  can cook dinner again.  Laundry is  just barely getting done over a couple of days, I'm dragging so slowly it's just not me.  I'm bored to death but I can barely move.  This really stinks.  Taking a shower is a real work out.  Tomorrow I've got another long drive to see my neuro, and then Tuesday I drive another hour hour and half to go to my SSI hearing.  By then I'll be so wiped out, they'll really see me at my worst, which will probably be a good thing in the long run.  Right now I just wish all this driving around would be over and everyone would would ju let me sleep.  Having trouble getting the baby down tonight.  DH is taking turn, but it's mine again.  Talk to you soon.  Take care.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 

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