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Veteran Member

Date Joined Mar 2006
Total Posts : 2606
   Posted 11/5/2008 9:36 AM (GMT -7)   
I post on the lupus form and have poked my head in here from time to time. I also have OA. My lupus has been quiet for some time and since eliminating gluten from my diet, my fatigue has lessened. Three weeks ago my rheumy took me off my miracle drug, CellCept, because my labs were showing elevated BUN and creatinine levels, and she attributed that to the med.

Four days ago new and different symptoms popped up and I'm trying to understand them. I've had a major flare-up of joint pain -- elbows, wrists, hands, knees, and feet. The elbow pain is new and feels like a bad toothache in each elbow and keeps me awake at night. My knees hurt so much at night that it's hard to turn over. Hubby says that I cry out a lot in my sleep.

What's different is that morning are so bad that I dread getting out of bed. Walking is excrutiating and I hobble around like an old woman (even though I almost am...:) While I've had morning stiffness before, it usually subsides within 30 min to an hour. This doesn't go away till mid afternoon, and even then I feel crippled by the pain. I was having so much trouble walking yesterday that I went to a pharmacy and bought a cane so I could get through the voting line yesterday. I was lucky - it was only a 15 min. wait.

Two rheumys have told me that I have RA, but that was a long time ago. I don't have any nodules. My right hand is becoming deformed in that my fingers point to the right, but I don't have the big knotty joints that lots of folks with RA have. Frequently my joints (esp hands and knees) are hot, but they never get red. Labs have never shown an elevated sed rate.

I'd appreciate any feedback you folks can give me.


SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Mar 2005
Total Posts : 3199
   Posted 11/6/2008 5:30 AM (GMT -7)   
Hey Pat.. sorry to hear all that you are going through.. It is possible to have RA with negative labs.. However, I am wondering if the new and different symptoms that have popped up are due to the fact that you have been taken off of CellCept.. did the doc put you on anything else? I know when I get taken off one med, and not put on another, my body flares like crazy.. it's like a dam has been opened and I am being flooded with pain..

when is your next appt with a rheumy? Maybe you can go and see a Pain Management doc?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ

Regular Member

Date Joined Aug 2006
Total Posts : 142
   Posted 11/15/2008 2:09 AM (GMT -7)   
Hey Patty- (im from the lupie board too)
I just posted on there about asulfasalazine and that it made a huge difference with my morning stiffness. Enough to stop my celebrex which was the only thing that even got me out of bed before! have you tried the asulfasalazine?
Dx: UCTD vs autoimmune spondyloarthropathy vs psoriatic arthritis (ie Limbo x5 yrs) Raynaud's, proteinuria
Rx: Plaquenil 400mg, Ultram PRN, Sulfasalazine 2 gram

New Member

Date Joined Nov 2008
Total Posts : 8
   Posted 11/15/2008 8:33 PM (GMT -7)   
Hi Patty, I'm new here as well and I'm sorry to see others like your self having so much pain. Your describing the same symptoms I'm having as well and I too was dxd with RA in98 and yet I too show no redness around the joints. I can hardly walk now as well it has gotten so bad. I need a crane in the worst way now and now my shoulders are popping out in sleep. I have a doctor that is doing almost nothing for any of my symptoms. We have a doctor shortage here in Ontario ,Canada so getting a new doctor is going to be like winning the lottery.

Patty I hope your Rhumy finds something wishes

deb in indiana
Regular Member

Date Joined Aug 2005
Total Posts : 387
   Posted 11/16/2008 5:17 PM (GMT -7)   
Ducky ,Thank you for writing what you did when i read this it just hit me .Doctor took me off celbrex month ago nd told me to take 2 percert at a time instead and i thought that was nuts but she's the doctor and i have been in a major flare and thats why your post just made nnnnnnme think of that i have p/arthtritis and o/arthtritis ,fm and 11 bad disk that you i think i need a celbrex now Deb

Regular Member

Date Joined Oct 2006
Total Posts : 114
   Posted 11/20/2008 1:34 PM (GMT -7)   
Hi Patty,
I wanted to chime in here and suggest that an MRI might be a good idea since I see Prednisone on your signature. It would rule out any mechanical problems with your bones. The pain you're describing is similar to what the folks on the AVN/ON (avascular necrosis/osteonecrosis) board describe. My daughter has it, but was diagnosed early in stage 1 and 2...I'm certainly no doctor nor am I saying that this is what's going on, but it does deserve some more indepth evaluation and an MRI would at least put your mind at rest that it's not AVN/ON. All the best, and I hope you get some relief soon!
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use

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