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How Sick Do You Have To Be?


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#1 summer

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Posted 01 April 2007 - 12:29 AM

Hello Everyone,
I was just wondering how sick do you have to be before a doctor puts you on medication?.
As you all know I have recently been diagnosed with Limited/Crest Scleroderma and I'm not on any meds as yet.
I have had a high pulse rate all week and am extremely sore above my sternum area on my chest and am constantly exhausted.
I went for a nap today and woke up to a shuddering feeling near my heart/chest area.
It just makes me wonder what area of my body the Sclero is attacking next!
Anyway thanks for listening.
Celia

#2 jaateach

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Posted 01 April 2007 - 04:00 AM

ced, sorry you are experiencing such nasty stuff. Did u get checked for APH? Chest pains is what sent me to the hospital, it was the pulmonary part of this while thing. Might be a good place to start. Joe

#3 peanut

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Posted 01 April 2007 - 06:10 AM

Celia,
Are you seeing a scleroderma specialist, a rheumatologist or a regular doctor?
I'm not a medical professional, but you might want to see about getting an echocardiogram, a test for PAH. The fatigue and exhaustion can be treated with different meds. I experienced a lot more energy once they put me on prednisone. I know prednisone isn't for everyone and there's other meds but exhaustion is worth mentioning.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Margaret

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Posted 01 April 2007 - 06:33 AM

Hi Celia ,

Gareth has been complaing that his collar bone hurts (where is joins the sternum) for months and no one can connect it to anything. Is that what you are feeling....sore bones or the tissue around the sternum? Just curious.

Margaret

#5 janey

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Posted 01 April 2007 - 08:11 AM

Celia,
Have you asked this question to your doctor? Hopefully you're seeing a rheumatologist since they are the specialists with autoimmune diseases. Then as Peanut mentioned, there are scleroderma specialists as well.

There are several medical tests for scleroderma that you might want to look at. When I was first diagnosed I had lots and lots of tests. The purpose of them was to determine what is and is not affected and to establish baselines which is very important. One test I didn't get which I should have was an EKG. I would highly recommend it considering your current symptoms. Other important ones are the ECHO and pulmonary function tests. All are non-invasive. You might mention this to your rheumatologist on the next visit.

Please keep us informed and

Big Hugs to you,


Janey Willis
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International Scleroderma Network (ISN)

#6 debonair susie

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Posted 01 April 2007 - 11:04 AM

Hi Celia,
I was also diagnosed with CREST/Scleroderma, among other things... yet my diagnoses came from a gastrointerologist to whom my internist sent me... not long after, treatment began, via medication.

You've gotten great and helpful replies... It's good that you have received a diagnoses.However, I hope that your doctor follows through (if he hasn't done so already) and gets baseline information regarding your health so that you can be treated properly. Many of us write out questions to ask our doctors and it sounds as though you have some.
In the meantime, I'm so glad you've been posting here,as this is a great place to be for support :rolleyes:
Take care and please let us know how things are going.
Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#7 Sweet

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Posted 01 April 2007 - 12:05 PM

Ideally you shouldn't be that sick prior to starting some sort of treatment. My rheumatologist put me on Plaquenil the second he suspected an autoimmune disorder - the purpose of that drug is to help with fatigue and hopefully halt the progression of the disease.

This would be a good discussion for your doctor as well.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 nan

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Posted 01 April 2007 - 01:17 PM

Celia,
I was diagnosed with CREST/scleroderma in December. I was already on Plaquenil so the doctor didn't add anything. The doctor did order bloodwork and urine samples. 16 vials of blood and 4 urine samples were taken. I also was told to have a baseline echocardiogram and pulmonary function tests. Since I have so much trouble with constipation the doctor also ordered a gastric emptying test. I also had several xrays, chest, hands, and elbows. I hope this helped you some.
Nan

#9 summer

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Posted 02 April 2007 - 01:48 AM

Hi Margaret,
I am sore approx one inch above the sternum (i thought the sternum is where you would do CPR not quite on the stomach but where it is bone, if you know what I mean) going up to the middle of your chest towards the right side of my heart, it feels ok if I don't touch it if I press lightly or wash on that area it is extremely sore/bruised feeling.

Thank you everyone for replying. I am seeing a rheumatologist, I have seen 2 so far and shall be seeing a 3rd this Thursday as I am not happy with the "you'll be alright attitude". I have had 2 ECho's done, CT Chest. VQ Scan , PFT ( which apparently was inconclusive I was told the PFT only is accurate on 4% of people as the machine is extremely sensitive and if you don't blow in the machine the right way they can't get a proper reading. ( I don't believe this, if this was the case then why bother sending anyone to have the test).
Blood test showed +ANA - 1600 Centromere, + Anti-Centromere, negative SCL-70, negative Urine and Thryoid. O2 levels. The first echo I had done apparently was bad. the second echo showed everything normal. My rheumatologist called me today after me trying to reach him for 4 days and said that he thinks my high heart rate has nothing to do with sclero (I know something is wrong and I get sick and tired of doctors saying maybe you are stressed, go to the ER if it gets worse). You get to the ER and they don't even know what Sclero is and look at you dumbfounded.
As soon as I heard my rheumatologist tell me that he thought the soreness in my chest and high heart rate wasn't sclero related I knew then that I had to find a rheumatologist who would listen and take me seriously. Anyway enough of me winging. Thanks for listening.
Kind regards
Celia

#10 summer

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Posted 02 April 2007 - 07:30 PM

Hi Andyko,
Thanks for answering my post, yes I do still have an appointment at St Vincents it is this coming Thursday. I shall be very interested in what they have to say regarding my symptoms. My Consultant is Dr Romas and I do believe Dr Clemmens still works at St Vincents if you are interested.
Anyway best wishes to you Andyko and I hope you are pain free!

Kind regards
Celia ;)

#11 janey

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Posted 03 April 2007 - 03:15 AM

Celia,
You might want to request that EKG when you go in tomorrow. It's a quick and simply test and if that high heart rate is due to some sort of arrhythmia, the EKG will spot it. If it's not - then you can move on to look for the cause somewhere else. And yes - scleroderma can cause all sorts of conductive heart problems. I speak from experience!

Please let us know how your appointment goes. Hope all goes well and you get some answers.

Big Hugs,


Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#12 Pam

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Posted 03 April 2007 - 03:42 AM

Hi Celia,

I had pain in the same place and my doctor found that it was inflammation of where my ribs connect with the sternum. He pressed on the area a couple of inches to the right and left of my sternum and that was where it hurt. I had thought it was my lungs. It was uncomfortable whenever I exhaled. He upped my prednisone for a couple of weeks. It does feel better now. I hope you feel better soon. Pam