rheumy appt, new drug, and poss diagnosis

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Regular Member

Date Joined Oct 2012
Total Posts : 23
   Posted 11/7/2012 5:23 PM (GMT -6)   
Oh boy, sooo my name is Jen, I have posted here, lupus, fibro and lyme boards before. Brief history, treating for past yr for fibro, lots of tests have been done. Some definitive but bldwrk not showing specifically. I am diagnosed with: degenerative disc disease (had 1 major lumbar surgery and am recommended to have a double fusion that I'm puttimg off), TMJ, Sjogren's, arthritis (not specific for RA yet), chodramalcia, hypercalciuria, osteopenia, tachycadia, and prob more that I'm forgetting. I am 39. I sought out the chief of rheumatology at a big NYC hospital. I am treating with the best right now. Recently had MRI of both hands (only other people like me who've been thru soo much medical crap could appreciate the fact that the freakin fire alarm went off while I'm in the machine so I get rushed outside...IV in arm and all!) anyway, went to rheumy today to f/u. I have been struggling to get a diagnosis. He said that basically 2 dr's agreed that I have severely dry eyes and explained Sjogrens and that it usually overlaps with a connective tissue disease. My MRI 's showed that the capsule surrounding the joints in my hands are inflamed (I can no longer wear my wedding rings :( after 15 yrs). ..it also showed some tenosynovitis surrounding the tendon. When I looked that up myself it kept referencing ruptured tendons and surgery. I also explained to him that my face has been getting beat red and hot like fire and I break out on my chest, neck and face with a rash like thing. But he said that he wants to start me on Plaquenil. I had just finished a medrol taper and am on one every other day 8 mg and to stay on that until Plaquenil kicks in which could be at least 2 months.
So I asked him if he is thinking RA or LUPUS or MCTD and he shook his head yes to all 3 while I was asking. That my bloodwrk isnt showing positive RF, ANA, etc...but it definately looks to him and the tests prove that there is something inflammatory going on. (mom has Grave's disease and grandmother had SEVERE RA).
Anyone have any contributions to add to this? I'm going to copy and paste this onto the lupus board as well. Is anyone else on plaquenil or does this sound like your story? Oh, then endocrinologist said that tachycardia could be from the elavil I'm on. Anyone else experience tach from elavil?
I appreciate anyone who takes the time to read this and respond. I know all too well we all have our own stuff going on so thank you in advance!

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 11/7/2012 6:56 PM (GMT -6)   
Hi Jen. I'm sorry you're going thru such a rough time. Lupus is often difficult and takes time to be diagnosed. I saw 13 physicians over 2 years before being diagnosed. I wasn't receiving any treatment prior to that, so I'm happy that your rheumy is willing to start you on plaquenil. Except in severe (organ threatening) circumstances most lupies are started on plaquenil and yes to takes months before you feel the effects. Arthritis tylenol is an OTC that helps me with the pain, but as my lupus has progressed over the years, so have my meds. Keep us posted on how you're doing okay? Love, Butterflake

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/7/2012 8:25 PM (GMT -6)   
I have lupus and fibro too.
My doctor started me off on plaquenil, mobic, and tramadol. I had to stop the mobic because it was affecting my kidneys. I take tynenol now to help the mild pains.

I've always had a fear of having to go to the restroom during an MRI and having to hold it for so long. :)
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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