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Yearly tests for Systemic Sclerosis


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#1 annkd

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Posted 17 June 2010 - 09:10 AM

I was wondering if there was a source that listed the tests that should be done routinely for those of us with the systemic form of scleroderma (or any form for that matter). I know most of them, I think, but I want to be sure I am covering all the bases. Is there any publications or places to look on this forum? Many thanks. Just hoping to keep all my ducks in a row!! -Ann

#2 Jeannie McClelland

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Posted 17 June 2010 - 09:41 AM

Hi Ann,

Every symptom has a list of diagnostic tests, but it's really dependent on your own assortment of 'secondary to scleroderma' ills and your doctor as to what you would typically expect to get. And of course, availability and cost of any particular test can be a big influencing factor on both the doctors and insurance companies.

I get a chest CT every year, PFT's every 3-6 months, an assortment of blood work every month (mostly because of 2 of my medications), and echo every year, bone density every year. Periodically there will be blood drawn to check my thyroid levels and once a year (I think), they check my BNP levels (for indications of heart involvement beyond my pulmonary hypertension). Hmmm, it seems like I'm forgetting something~ A lot of test are only done once the patient becomes symptomatic and often only once, even then, for diagnostic purposes because once they know what is going on, further testing may not change either treatment or outcome.

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#3 janey

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Posted 17 June 2010 - 02:31 PM

Ann,
We do have a page on common medical tests for scleroderma. Some of these (such as Capillaroscopy) are performed during the diagnostic stage, while other are used to identify specific organ involvement. As Jeannie mentioned, some tests are performed only when a patients has become symptomatic. For instance, I never had an EKG until I got heart involvement. Now I get one once a year. With lung involvement, I have to get an ECHO once a year and pfts every 6 months. I get blood tests once a month primarily due to specific medications. Standard bloodwork for cholesterol, triglycerides, and thyroid are done about every 2 years or when I remind my rheumatologist. I use to get a CT yearly, but now my pulmonologists has decided that, unless my lung problems get worse, we'll forego the CTs (too much radiation exposure). I had a colonoscopy/endoscopy right after diagnosis but didn't have another one until 6 years later when I was diagnosed with anemia. After my last experience with the prep, I hope never to have another colonscopy!

So I guess the nuts and bolts is - it depends on what organs are involved and what medications you take and what symptoms you exhibit.
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#4 miocean

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Posted 18 June 2010 - 01:53 AM

I have had to have many yearly tests, not so much because of diffuse scleroderma, but due to being on lists for a kidney transplant. I have PFTs every six months, CT of the chest yearly, echo yearly, I have been having yearly heart catherizations due to abnormal stress tests and my sclero specialist said she might request another one in the fall to check my PH. Due to the transplant I now have weekly blood work and get a lipid profile every three months. I had to be tested yearly for HIV due to the transplant.

Jeannie,
What is a BNP level? How is it related to PH? All these letters confuse me.

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#5 annkd

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Posted 18 June 2010 - 04:04 AM

Thanks ladies. I am going to make a list - I think I've been getting most of these tests and maybe a few extra (for other symptoms). I have a new primary care doctor and I want him to have this check list. You never know if new doctors really read your medical history as carefully as you would hope. -Ann

#6 Joelf

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Posted 18 June 2010 - 07:09 AM

Hi Ann

I've only been diagnosed for the past year so a lot of my treatment is still ongoing. I have LFT's every 3 months, an ECHO every year/18 months & at the moment I'm seeing a consultant every 6 months at The Royal Brompton & The Royal Free Hospitals as well as a local consultant. As for blood tests....just call me 'the human dartboard!!' ;) :lol: I have one at my doctors' every 6 weeks for the medication & then when I last went to The Royal Free they did a complete set of blood tests again for me. They even nabbed my poor husband who was standing around minding his own business & took 3 phials of blood from him as a control!!! :unsure: :D

I certainly can't say I haven't had attentive & excellent treatment on the British National Health Service!!! :VeryHappy:

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#7 Jeannie McClelland

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Posted 20 June 2010 - 04:24 AM

Hi Miocean,

I was afraid someone would ask what BNP stands for because the old brain was being stubborn about giving up the spelling of the whole thing. :blush:

It's Brain Natriuretic (that was the word that was getting me) Peptide. It's a hormone found in the blood. It's made by the heart and shows how well/hard the heart is working. The levels should be low. They rise if the heart has had to work harder than usual over a long period of time and can be an indication of impending heart failure. It's also used to monitor how well treatment for heart failure, etc. is working. I've also read that BNP levels can rise in renal failure, so you might have had the blood test without knowing it.

It's my understanding that Pulmonary Hypertension and, to some extent, pulmonary fibrosis, can both cause the heart to work harder to get enough oxygen pumped around the body to meet its needs. I've got both PH and PF, so it makes sense that is something my doctors would want to monitor.

Wow, I don't believe I managed to retrieve all that this early on a Sunday morning! Usually my brain is chanting "More tea, more toast" and refusing to make sense of anything else!

Warm hugs,
Jeannie McClelland
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