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Sweet

Facial scarring...out of nowhere?

30 posts in this topic

Keeping my fingers crossed for some good answer to all the things going. You have certainly been through the mill lately.

 

I wish I could give you a big hug and a "poor baby."

 

(((hug))) (I can't access the emoticons.)

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Pam,

Let's start off with the good news - Congratulations on the EKG! Sorry to read about problems found in the ECHO and everything that is going on with you! I hope the Holter monitor helps to pin down what is causing your problems. Have they said anything about how to treat the pericardial effusion?

 

In reference to the methotrexate, as far as an immunosuppressant goes, I handled it much, much better than Imuran or oral cytoxan. I had a weekly injection and other than hair loss, I really didn't have any side effects. The only reason I had to stop was because I developed pulmonary fibrosis. However, I do understand why you are putting it off until the fall. This disease interferes enough with our life, so if we can maintain a little QOL, why not.

 

Let us know when you hear something.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

No treatment plan for the effusion yet. I called today, because I want to know how the holter monitor turned out and the blood work, and to see if he got the official results of the echo, but nothing yet. They are supposed to call me back, and I told them to get on the double with this heart scan business. They're going to give me a heart attack while I wait. :happy1-by-lisa-volz:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Everyone,

 

Quick update. I saw the Cardiologist yesterday, and had a nuclear scan and treadmill. Everything was normal. Good news I of course, but this guy was not that familiar with Scleroderma. I had to do a lot of explaining, which was a bit bothersome. He was unable to explain why the Echo, showed part of my heart was not moving right, but what he could say was "the scan you had today, shows your heart is in good shape". So I will go with that!

 

He did say he would give me a beta blocker to help regulate my heart, but he really wasn't overly concerned about doing that either unless my bouts of tachycardia were sustained for a few days....guess he wasn't listening when I told him it was non-stop for 3 weeks. :) Anyway, I'm not going to worry about it at this point, I'm going to take his word that things are OK. I saw the scans with my own eyes, and they looked good. Helps to be a nurse sometimes.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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