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#1 julia47



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Posted 20 July 2015 - 02:16 AM



I've just been for all the blood tests this morning and will have to wait one week for the results. I've had swelling in my hands for 2 weeks and my 2 middle knuckle bones are twice their normal size, pins and needles and aching in the bones. My mother and grandmother have scleroderma and I'm hoping that I don't but it seems unlikely. My doctor thought rheumatoid arthritis (RA ) this morning until I told him about my family history. My worry is that my bone swelling will continue until I look disfigured before I get to see a specialist. It seems to have come up pretty quick. And it looks like the bone joint growing not the skin. My doctor put me on 20mg prednisone for 2 weeks. Should I wait for the tests or make an appointment this week to see a rheumatologist. Maybe he can give something to halt the progression. My hand looks deformed already.



#2 Joelf


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Posted 20 July 2015 - 08:12 AM

Hi Julia,


Welcome to these forums!


Unfortunately, it is possible that the symptoms you describe could relate to Scleroderma, especially as you do have a history of the disease in your family. However, they could equally relate to something else, completely unconnected. I would suggest, because of your family history, that rather than going to a rheumatologist, you try and obtain an appointment with a Scleroderma expert, as the disease really does require specialist knowledge and expertise. Also, although helpful in getting the complete picture, blood tests are only a small part of the diagnosis process, so you do need to consult someone who can correlate all your tests and symptoms together in order that you can get the best treatment.


I've included a link to our medical page on Rheumatoid Arthritis in Overlap, as it is possible to have RA along with other connective tissue diseases such as Scleroderma.


Please keep posting and let us know the results of your blood tests and any appointments you have with your Scleroderma expert/rheumatologist.


Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 20 July 2015 - 11:41 AM

Hello Julia


I thought that Rheumatoid arthritis caused joint deformity whereas scleroderma does not. Both cause joint pain and swelling but I think that only RA causes actual deformity of the joints, especially and most recognisably the hands. 


As Jo has said you can have both but one will be as an overlap to the one that is the main disease and any disease had as an overlap does not present all of its symptoms. In other words one will be worse than the other!


I would not fret too much about what will happen before you see a specialist because the specialist can't put the brakes on your disease anyway or cure it. 


I hope this helps and keep posting.


Take care.

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#4 Shelley Ensz

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Posted 21 July 2015 - 05:46 AM

Hi Julia,


Welcome to Sclero Forums. I'm sorry that your mother and grandmother have scleroderma, and that you have new onset of finger joint inflammation and swelling. Since it is a joint issue and might represent some type of arthritis, it would be very appropriate to see a rheumatologist.  It often takes months to get a first rheumatology appointment in many parts of the country, so you might as well start on it now.


Please keep in mind that your family history of scleroderma doesn't mean that you will also get it, in fact, a family history of autoimmune diseases increases the odds of acquiring any autoimmune disease and not one particular type.  So, you might just as easily have gout, which is the most prevalent form of arthritis. In any case, its almost reassuring, from a scleroderma standpoint, that your joints are so swollen and the onset is so sudden, as scleroderma tends to begin slowly and insidiously, and cause the fingers to swell all over, not just in the joints, so that they look like sausages.  Also, there tend to be other symptoms early on or perhaps before that, such as Raynaud's. And joint deformity is much more of a rheumatoid arthritis thing than a scleroderma thing.


Not that its better to have one particular type of arthritis rather than another!  But some types are more treatable and the treatment will vary depending on the cause. If, for example, your initial tests reveal that you have gout or a clear cut case of rheumatoid arthritis, then you won't need to see a scleroderma expert. So do make a rheumatology appointment. 


To re-establish your precious peace of mind for the next few weeks or months, you may want to try my favorite trick of trying to identify and then improve my self-talk.  It's easy for any of us to talk our way to the top of a cliff, but we can also talk ourselves down from the cliff.


For example, we can tell ourselves that our finger "changes" are "interesting" but that "nobody ever died from swollen knuckles".  Or that "millions of people around the world have arthritis, if they can live with it, so can I," or "I'm probably a lot healthier than my mother and grandmother, plus whatever is wrong, I could get appropriate medical care", or, "I'll be okay because I have good information and support right away."  Even the old standby of "It is what it is" can be strangely comforting, perhaps because it doesn't give our imagination permission to go rogue into total drama mode.


Please stay in touch. We are here for you, whether you have only a temporary inflammation due to a passing thing, or whether it turns into something more than that. You'll get through this phase, and regardless of whatever develops, we'll be here for you.



Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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