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paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/24/2011 5:35 PM (GMT -7)   
I'm just wondering if anyone out there was dx by bone scan? My blood tests are all negative (I had a full rheumatological work up) but my bone scan shows inflammation in my knees, shoulders and hands! My rheumy is calling it a connective tissue disease and leaning towards Lupus or Sjogrens (but didn't mention RA). I'm starting on Plaquenil on Monday. I'm 21 years old and had joint problems since I was 8 years old. Does anyone know why she may not have mentioned RA but suggested Lupus instead?

My symptoms are, sore, swollen, stiff joints (not limited to the three spots shown up on the bone scan), dry eyes, fatigue, weight loss, Raynaud's, vascular rashes and nose ulcers. Like I said, I have no positive blood tests. My ESR, CRP, anti-CCP, anti-RNP, anti-dsDNA, ANA, anti-SSA and anti-SSB were negative. I have had a weakly positive ANA (1:80 speckled) and a slightly elevated ESR once.

Thanks.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12547
   Posted 9/25/2011 2:01 PM (GMT -7)   
Lupus causes inflamation like RA but doesn't deterate the bones.
I have Lupus.
I suffer from : Sore, swollen, stiff joints, dry eyes, fatigue, Raynaud's, vascular rashes and did have nose ulcers.
My bloodwork is totally normal, but my ANA is 1:360 speckled.

The plaquenil will help a lot with a lot of the symptoms. You will be able to tell a difference in about three weeks after starting it.
I do advise you seeing an optomologist (eye MD) for a vision screening before starting the plaquenil for a baseline vision check. It's rare but plaquenil can cause problems with your retina.
Joy

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/25/2011 6:30 PM (GMT -7)   
Thanks Joy.

I had my appointment today and to throw a spanner in the works, he's saying maybe Psoriatic arthritis. I don't understand that though, considering I don't have Psoriasis or any family history! He said my bone scan showed uptake in my knees, hips, shoulder, wrists and hands. But the fact that I have pitting in some of my nails and that my MCP joints showed up along with my hips... But I would have thought that have Psoriasis would be a pretty keen feature of PsA?!!!
Your symptoms match mine. I'm seeing ENT for my nose ulcers, he was concerned about them. But he was very strange. I'm starting Plaquenil though.

He said in 1 years time I would need to have my eyes checked. He didn't mention doing a base line test. And also my liver function was abnormal?? But didn't elaborate on that!

But I'm going back to see the second rheumatologist (the one who ordered the bone scan and said it's probably Lupus or Sjogren's) rather than this guy!


Thanks for your help.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8380
   Posted 9/26/2011 8:03 AM (GMT -7)   
Before starting the plaquenil it's good to see your eye doctor, the eye doctor with take yearly photo's of your eyes
as plaquenil can cause possible blind spots in your vision, so do go and get your eye's screened. Also, your eye doctor can get you
started on eye drops for sjogren's which will help with eye pain if your having any eye pain.
I've always have had good bloodwork and it was a MRI Scan that showed I had Arthritis, some times it's
also referred to as Sero-Negative Arthritis, but it has the same type treatment as RA ..
You'll probably get yearly scans done to make sure your
joints don't get any further erosions or damage...
Many well wishes to you and keep us posted on how things go for you at your doctor's visit...
Since you've had an abnormal Liver test your doctor might hold off on any further treatments,
till it shows normal, maybe ask about what's up with the liver tests...and go from there....
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/26/2011 5:30 PM (GMT -7)   
Chartreux, thanks. I saw an ophthalmologst 2 weeks ago. He checked my eyes and said that my vision was fine and he put the orange dye in and then the green dye and looked in them with the white light, then the blue light. He said that my eyes were dry and that I have inflammation in my tear ducts. I don't know if the screening for Plaquenil is similar.. But the rheumatologist said in 12 months time I'd have my eyes checked.
I've got some eye drops for my eyes and he said if they irritate me a lot then I can get plugs put in.
Thanks for the advice. I'm going to see my GP tomorrow, so I'll ask her my questions!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8380
   Posted 9/27/2011 3:27 PM (GMT -7)   
Hope things went well for you today
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12547
   Posted 9/27/2011 4:52 PM (GMT -7)   
I just had my first plaquenil eye test. The doctor had me do a field vision test and photgraphed my eyes. No laser scan of my retinas. He's supposed to be the expert on this.
Joy

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 9/27/2011 10:22 PM (GMT -7)   
Thanks. Things went well. My GP is always lovely. She gave me some anti-nausea medication (for the Plaquenil side effects) and I got some Prednisone for my trip overseas next month. She basically said she couldn't comment on whether it was PsA or Lupus or Sjogren's, but that you don't have to have Psoriasis to have Psoriatic Arthritis! Who knew?!

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 10/6/2011 5:57 AM (GMT -7)   
Hello.
I have gone through blood tests, MRIs, xrays, etc and a bone scan years ago and the only thing that actually showed inflammation was the bone scan. So for me, it is a combination of the bone scan and my symptoms that have dianosed me.  (I don't have lupus but have sacroiliitis, inflammation of the SI joints).  Am sorry you're suffering so much.
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/6/2011 10:41 PM (GMT -7)   
Thanks Lu2011, it sounds like you and I lucked out with the blood tests and stuff! I guess thank goodness for the bone scan! I see you have ulcertative colitis, do they think that you have Enteropathic arthritis?

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 10/7/2011 6:22 PM (GMT -7)   
Hi there,
Yeah..it's interesting how only the bone scan showed anything.  What exactly is enteropathic arthritis?  For me, I've been diagnosed with sacroilitis.  THey've actually found a co-relation between ulcerative colitis and sacroilitiis.  Doesn't mean that if you have UC, that you'll get sacroiliitis, but a lot who have sacroiliitis have had UC...which I guess between the bone scan, symptoms and my medical history, they've made the diagnosis. 
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

paperbagprincesses
Regular Member


Date Joined Apr 2011
Total Posts : 94
   Posted 10/7/2011 6:39 PM (GMT -7)   
I haven't done a lot of research on enteropathic arthritis because I don't have an inflammatory bowel disease, so I didn't think it was really relevant to me. But I know that it can cause an arthritis that is very similar to ankylosing spondylitis or psoriatic arthritis. I'd recommend Googling it and see if it sounds like you.
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