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Results from seeing new rheumatologist


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#1 JBG

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Posted 25 April 2011 - 05:38 PM

Hi all,

After being so unhappy with my current rheumatologist, I decided to see another one. I'm glad I did. She recommended doing a complete blood work. The results showed CREST, which I knew I had since 1998, but also showed positive for Lupus. Anything greater than or equal to 10 is positive, I have 14. The last time I was tested, 5 years ago, I was negative. I'm seeing the doctor on Wednesday for a follow-up.

What a difference in doctors. The one I was using, didn't do any tests except for when I asked him. Because I recently asked for a chest x-ray and PFT, it was discovered that I have Valley Fever and asthma. I'm now being treated by a pulmonologist.

I've been going through a lot of stress, but have been experiencing a great amount of fatigue. The doctors all blame it on the scleroderma, but can it be from Lupus too?

The new rheumatologist is very compassionate and has a great personality. The staff is also super.

I'll post an update after my appointment on Wednesday.

I would love to hear from anyone who has Lupus or knows of anyone who does. I'm so concerned about this now.

Thanks,
JBG

#2 mydaddy

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Posted 25 April 2011 - 08:51 PM

Hi my name is Lydia, I came to the scleroderma message board seeking advice for my husband who tested positive for scleroderma. I've had lupus for the past 20 years with no major organ involvement, my only symptom to this day has been a rash on my arms, but that has resolved too. I only get it when exposed to the sun. Like scleroderma lupus is a very complex disease, is a very individual disease; everyone is affected differently.

I joined the lupus message boards about 3 years ago. they have a lot of information on lupus and excellent advice just like this board....... I hope everything resolves for you soon, wishing you well. take care.

#3 Joelf

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Posted 26 April 2011 - 01:04 AM

Hi JBG,

I'm very sorry to hear that you've tested positive for Lupus, as well as having Scleroderma. Unfortunately stress can cause a lot of problems with auto immune diseases and Fatigue can be a feature of both diseases.

However, it is good that you've got yourself a rheumatologist in whom you can feel confidence. Do please let us know how you get on with your appointment on Wednesday.

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#4 Jeannie McClelland

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Posted 26 April 2011 - 08:30 AM

Hi JGB,

Um, we don't have the autoimmune equivalent of a 'frequent flyer' club, so you don't get any points towards a "Got that!" T-shirt. All joking aside, I am sorry you've been diagnosed with Lupus as well. It's a real shame that having one autoimmune disease, we aren't automatically immune to others. Not fair. I hope you don't have any additional problems caused by the SLE~

It's great that you've got a doctor you can work with now. That sure makes it all just a bit easier. I'll be looking to see how you get on tomorrow too.
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#5 Amanda Thorpe

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Posted 26 April 2011 - 04:09 PM

Hello JBG

What a difference a good doctor makes! My understanding is that if you have an overlap disease you don't get all of the symptoms of that disease. I have a friend with 10 autoimmune diseases and she only gets a few symptoms of each disease rather than 10 full blown diseases, it's just as well!

Let us know how you get on Wednesday and take care.
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#6 JBG

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Posted 27 April 2011 - 04:00 PM

Thanks for all the replies. I had a follow-up with my new rheumatologist today. She said that besides CREST, I do have the Lupus anti-bodies. She also said that the medications that I'm taking for the CREST, methotrexate (25mg/week - max amount) & lefludamine (20 mg/day - max amount), is the same as if I only had Lupus. Therefore, my medications are not being changed. I also have been going for blood work every 2 months, so that would stay the same too. She wants to see me in 3 months.

I've been hit with so much this past month - Valley Fever/asthma and now Lupus on top of the CREST :temper-tantrum:

#7 Amanda Thorpe

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Posted 27 April 2011 - 04:11 PM

Hello JBG

Ever feel like you have a big bulls-eye on your forehead saying "autoimmune diseases kick here"?! Mind you it's nice when medication for one disease works for another, I have interstitial cystitis (IC) and when first diagnosed with scleroderma some of the medication I was given was also helpful for IC.

You're well entitled to a :temper-tantrum: and even a :emoticon-bang-head:

Take care and keep posting.
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