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Biomarker for Diffuse Scleroderma skin has been discovered!


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Facial scarring...out of nowhere?


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#21 kiwimum03

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Posted 20 May 2010 - 09:19 PM

Sorry you are having so many skin changes Pam,
I too have changes on my face, and I am not happy about it, I don't want to look different either!
I have yet to see a dermatologist about it yet though. I keep meaning too, but I don't know whats holding me back.

I would also be interested in anyone elses experiences with Methotrexate as my rheumatologist suggested this on my last two visits and I just don't feel ready yet, I don't know if its because I don't have a proper diagnosis or I just don't want to put any more pills into my body.

Big hugs xo

#22 Sweet

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Posted 22 May 2010 - 12:36 PM

Thanks Shelley, I will read through everything. Glad I can make you smile. :)

Margaret...hmmm never even thought about that... I will talk with my doctor about it, thanks so much.

Kiwi, I think sometimes it's easier to ignore something because then we don't have to deal with it, or we can continue on in our denial process...not always good, but we do it.

Thanks guys.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#23 lizzie

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Posted 23 May 2010 - 03:35 AM

Hi Sweet (and Kiwi mum), you were both asking about peoples' experience with Methotrexate. I have been on Methotrexate (self injection) for almost one year now. I was previously taking Cellcept, but had to stop because of a rare side effect (oesophageal haematoma). Re Methotrexate - it's a love/hate relationship! On the plus side - my skin has improved a lot. On the minus side it makes me feel unwell for 2-3 days (nausea, lack of energy), and I have had to stop temporarily on a couple of occasions due raised liver enzymes. I would dearly love to stop taking it, but know that this might risk progression of the skin thickening/tightening. I think the only way to decide is to give it a try - it effects everyone differently- and see what the balance of positive to negative effects is for you. good luck
Lizzie

#24 Sweet

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Posted 26 May 2010 - 01:04 PM

Thank you Lizzie for your input. :emoticon-hug:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#25 Sweet

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Posted 26 May 2010 - 01:11 PM

Just a little update:

As some of you may know, a few weeks ago I was in a flare that I’ve never really experienced before. (hardening of skin on my calves, forearms, and scaring on my face, and more vessel damage) My rheumatologist suggested I move toward the next line of treatment which is Methotrexate, I would get injections once per week on Tuesday. Of course along with that comes all the side effects similar to chemo, and after careful consideration, I’ve decided to refuse treatment at this point. I told him I would reconsider in the fall. I just don’t want my whole summer ruined with being sick 5-6 days a week if I can put it off for a few months. They put me on steroids which has helped.

For the past few weeks I’ve been suffering with tachycardia (rapid heart rate) running at about 92-120 beats a minute non-stop, with some chest discomfort, tightening, left arm tingling and flutters.
I went into the doctor yesterday and ended up in the hospital for 6 hours. They did blood work, for which I don't know results yet, an EKG that was not normal, something to do with some segments of the beat should be long and mine were short, and some should be short and mine were long, they did an Echo, which was not normal, it showed pericardial effusion and basal septum dysknesia meaning it's bulging out where it shouldn't, I have a 24 holter monitor on now, they did spirometry which I didn't do very well with, my lungs are working at about 80 percent, and they are scheduling a nuclear scan of my heart. Waiting for that appointment time. In the mean time he put me on Singulair (tabs), QVAR,(inhaler) and Veramyst nasal spray. When I get the results of the holter monitor I'll let you know, and of course I'll let you know about the heart scan.

Anyway, other than that I had a terrific day LOL
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#26 enjoytheride

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Posted 26 May 2010 - 03:12 PM

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.)

#27 janey

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Posted 26 May 2010 - 03:41 PM

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
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#28 Sweet

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Posted 27 May 2010 - 11:57 AM

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)

#29 Sweet

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Posted 18 June 2010 - 07:45 AM

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)

#30 enjoytheride

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Posted 18 June 2010 - 05:24 PM

Well it's about time you had some good news. That is a relief. (((hugs)))