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What Next?

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#1 Nelly


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Posted 17 July 2007 - 03:43 PM

I posted a couple of times earlier in the year....now I'm back and would really appreciate any input. :P

Here is a quick history...morning stiffness & joint pain/aching started late in 2005, then low grade fevers, fatigue, malaise, mild joint swelling. ANA showed a weak positive at 1:80, CRP & SED rate high, everything else (antibody tests & rheumatoid factor) all negative. rheumatologist felt like it was some form of inflammatory arthritis...started me on methotrexate. Symptoms continue to worsen, start noticing my muscles/tendons stiffening, plus chronic UTIs, facial flushing across my nose and checks, kidney stones, severe heartburn/reflux and fullness in my chest & throat, and a dry cough. rheumatologist diagnoses RA by the way my joints are looking. Start Remicade and feel slightly better. Fast forward to January of this year, bloodwork shows ANA at 1:160 (speckled pattern), SED & CRP are still high, and Scl-70 shows up as a high positive. rheumatologist thinks it's a fluke positive. Everything else is still negative. In March we decide to discontinue Remicade because of secondary infections and the thought that it might be causing the ANA to go up and the Scl-70 to show positive. We retested my bloodwork last week and my ANA showed negative, but the Scl-70 is still a high positive..SED & CRP still high, everything else negative. rheumatologist is still saying RA and that the sclero antibody is a fluke because I show no skin symptoms. I was okay with that the first time, but seeing it show up again....I don't know. Another thing that showed up in this lab was my AST & ALT (liver tests) are high....we are retesting again in August to see if I need to come off the methotrexate too. :(

I need to hear from you guys that have been through this ordeal of getting the RIGHT diagnosis. Would you push for further testing? What could he test to help rule out Sclero? I've tried to stay balanced and practical throughout all of this, but it's hard and frustrating. My joint presentation is not symetrical....99% of the time it's my right side....so I've had my doubts about the RA diagnosis all along. Am I in denial or is this a reasonable thing to pursue and rule out?

I really appreciate any input you can provide. This is such a wonderful group!

#2 jefa


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Posted 17 July 2007 - 10:05 PM

Hi, Nelly, welcome back. Many of your symptoms are similar to mine, except that my joint involvement has always been symmetrical. My inflammatory polyarthritis has been active since 2003. Have you had x-rays? RA was ruled out in my case as the x-rays show no synovial erosion after four years. I have always had negative ANA, RF factor but SED and CRP have remained elevated. My rheumies did not want to give me methotrexate without some clinical indication that RA existed, so I have been taking indomethacin (an NSAID) for the inflammation and an paracetamol for pain not caused by inflammation.

My advice to you is to see a scleroderma specialist. I would hesitate to believe that the high SCL-70 was a fluke, with two separate high readings, though these tests do not necessarily rule in or out any specific diagnosis. Not everyone has the same level of skin involvement, either. All the more reason to have the expertise of a specialist.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 janey


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Posted 18 July 2007 - 06:31 AM

Welcome back. I'm glad to see you posting again.

Ditto on everything that Jefa said. I think it's time for you to see a scleroderma specialist. We have a page on Scleroderma Specialist that might help you find one in your area. Another link from the same page that Jefa provided is one on AutoAntibody Patterns. It provide information on what type of antibody testing is done for specific rheumatic diseases such as scleroderma and RA.

Do you have Raynaud's or do you hands get cold and numb? A symptom that is very common with scleroderma.

Please keep pushing for a diagnosis. If you aren't satisfied with the wait and see attitude of your current doctor, please switch. Keep us informed.

Big Hugs,

Janey Willis
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International Scleroderma Network (ISN)

#4 nan


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Posted 18 July 2007 - 08:12 AM

I agree that you should see a scleroderma specialist if possible. It is possible to have scleroderma without hardening. It's called scleroderma sine scleroderma. I have CREST/limited scleroderma with no hardening and my bloodwork is normal, but I have all of the symptons. Take Care!

#5 Nelly


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Posted 19 July 2007 - 07:54 AM

Jefa ~ I've had a pelvic and shoulder xray, and both are totally normal (well, my right shoulder has some mild impingement). Those are the only xrays that have ever been done. I tried Mobic & Celebrex but both cause my heartburn to be unbearable and stomach pains.

Janey ~ I do get numbness and discoloration in my pinky toes and thumbs, but not any where else. Would that still be Raynaud's?

Nan ~ Thank you, I'll look into that.

Looks like I need to start researching for sclero specialist. Thanks again for the input!