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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 lazychain

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Posted 13 January 2012 - 02:06 PM

Well I'm just beginning to wonder whether I am 'thick' or what? I have just received a letter from a doctor who my original Rheumatologist sent me to. It is just a copy that was sent to my Rheumatologist if you understand me right.

In it is quoted the following:

"I note she has been monitored regularly for potential cardiorespiratory complications," This is not so unless he is referring to an echo-cardiogram I had last year. Is this what he means?

When they say, "She has never had any cutaneous trophic changes despite her Raynauds," what exactly does this mean? Further on he is saying, "This might potentially improve some of her cutaneous symptoms," but he has just said, "She has never had any cutaneous trophic changes." Is it me or is he contradicting himself?

Here's another bit I don't understand, "She has acrocyanosis and livido reticularis. She has sclerodactyly but no vasculitic lesions or other skin trophic changes."

Also this, "I note, however, that her thyroid function tests show subclinical hypothyroidism."

He ends up by saying, "Clinically I do not think agressive immunosuppressive treatment with cytotoxic agents are currently indicated." Could someone explain this?

I thinks its the medical jargon thats baffling me.

Regards,

Lazychain

#2 Amanda Thorpe

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Posted 13 January 2012 - 04:24 PM

Hello Lazychain

Let's have a go:

"I note she has been monitored regularly for potential cardiorespiratory complications". I would guess they are referring to the fact that you should be having at least and ECHO and lung function test every year for about the first 5 years if you have systemic sclerosis.

"She has never had any cutaneous trophic changes despite her Raynauds,". Well cutaneous pertains to the skin and trophic means of or related to nutrition so you've got me there! Atrophic makes more sense as it means decrease in size of an organ from disease or lack of use and I guess they could be saying you haven't had any loss of function from having Raynaud's?

"This might potentially improve some of her cutaneous symptoms." I take it that whatever "this" is might improve your skin symptoms which I would not think includes Raynaud's myself because it's a vascular illness and does far more than just affect the skin.

"She has acrocyanosis and livido reticularis. She has sclerodactyly but no vasculitic lesions or other skin trophic changes." Acrocyanosis means cyanosis of the hands and feet which is an extreme spasm of the blood vessels in response to stress of cold. Sound familiar, it should it's Raynaud's. So I guess they are saying you have Raynaud's but why they don't just call it that I don't know. Livido reticularis is a mottled, purplish discolouration of the skin and it appears you also have this. Vasculitis is an inflammation of the blood vessels and lesion means an area of skin damage, my guess is this is saying you don't have any ulcers from the Raynaud's. Sclerodactyly is when the skin on the fingers become tight, stretched, wax-like, and hardened, check out the video the link takes you to as it's me and my hands demonstrating sclerodactyly! My only wild guess about skin trophic changes is it's saying you don't have any areas of hard, tight skin.

"I note, however, that her thyroid function tests show subclinical hypothyroidism." Well subclinical means not severe enough to have noticeable symptoms and hypothyroidism means an underactive thyroid. I guess that maybe something in your blood work suggested an underactive thyroid but it's not severe enough to give you symptoms if that's possible?

"Clinically I do not think aggressive immunosuppressive treatment with cytotoxic agents are currently indicated." As yet you are not ill enough to need high doses of the drugs used to suppress the immune system. As it's an autoimmune disease the idea is to try and dampen down the immune system and therefore slow the damaging progress of scleroderma. The more common immunsuppressants for scleroderma are mycophenolate and methotrexate but they aren't the only ones. Cytotoxic agents in relation to scleroderma are things like cyclophosphamide, a cancer drug, that's given in lower doses for fibrosis of say the heart or lungs.

I hope this helps but remember I am guessing in my capacity as a non medical layperson and I could be totally wrong. You could always ring the rhematologists' secretary and say you want an explanation or ask your own doctor for one.

Why they have to use such "big" words I'll never know and I have never heard of Raynaud's referred to as acrocyanosis, of course this could be because my guess is wrong! Is this rheumatologist a scleroderma expert because they don't talk like one, well in my opinion anyway.

Take care and I can't wait to see what everyone else comes up with, someone will know what trophic means in relation to Raynaud's I'm sure!
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#3 Joelf

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Posted 13 January 2012 - 04:44 PM

Hi Lazychain,

It can be very confusing reading the medical notes which the doctors' send out; please note I'm not a doctor and have no medical training apart from a first aid certificate, which is handy for splinting a broken leg, but not much good for deciphering complicated doctors' letters! ;) :lol:

However, the first paragraph could certainly relate to the ECHO you had; I don't know whether you've had any other tests?

From what I understand a cutaneous condition is a medical condition that affects the skin, hair and nails and inflammation can trigger trophic changes which can cause wasting away or changes in the way they grow.
I've included a link to Fingernails, Fingerprints, Nailfolds, and Cuticles to help explain a little more about it to you.

Cyanosis is the term used to describe fingers after a Raynaud's attack when they go blue and then purple before returning to a more normal colour and Livedo reticularis is a mottled purple discolouration of the skin. Here's a link to Sclerodactyly and Digital Ulcers (vasculitic lesions).

It is common for people to develop thyroid diseases and Hypothyroidism is an underactive thyroid.

I think the last paragraph refers to the possible use of a powerful immune suppressant in your treatment which at present they're not intending to use. (I received 6 intravenous infusions of Cyclophosphamide which would come under that heading, but in my case my consultants did feel that it would be applicable; obviously everybody's treatment is different depending on how the disease has affected them.)

After I'd had been to an excellent lung hospital and had innumerable tests I received, like you, a written copy of my results and blood tests which actually gave me many hours of pleasure looking up all the details for them, but then I am a little bit peculiar and should perhaps get out more!!! ;) :lol:

Perhaps you could go back to your rheumatologist and ask him to explain fully the meaning of all the medical jargon in your letter so that you know exactly where you stand regarding your disease and treatment?

Kind regards,

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#4 judyt

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Posted 13 January 2012 - 09:50 PM

Since nobody seemed to know what trophic changes meant, I looked it up. Several sources said it means changes caused by interruption to nerve supply. I, personally have not seen anything that suggests that the skin changes we are all aware of are caused by interruption to nerve supply.

So Amanda could be right - changes caused by Raynauds - but why not just say so! I guess the answer to that is for clarity to those 'in the know'. Just as lawyers have set ways of describing something to avoid things being misconstrued.

I have found some funny things in reports from time to time - never of a particular medical nature though - and I put it down to the typist mis-hearing what was said on the dictaphone, and nobody checking before it was signed.

JudyT

#5 miocean

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Posted 14 January 2012 - 09:28 AM

This reminds me of when my specialist said that based on what my bone density readings were and that I have to take a steroid forever because of the kidney transplant I would someday need a hip transplant. Kind of freaked me out until I looked it up and found out that a hip replacement is the same thing as a transplant. For some reason, transplant sounded much worse.

Why do they do this to us?

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#6 Amanda Thorpe

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Posted 14 January 2012 - 10:33 AM

Hello All

Don't forget though we couldn't have hours of fun googling these things if they were obvious! I must admit I look forward to a googling session whenever I get one of these letters!

Take care.
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#7 Sweet

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Posted 14 January 2012 - 10:58 AM

Hi Lazychain,

I'm a little late in welcoming you, but welcome!
Reading your chart notes is always fun. I have a copy of ALL of my records from ALL of my doctors at home. I take them in regularly, and ask them what they meant. I have also caught many mistakes, where they say, that didn't know what they mean, and I've had them amend my chart. Ask questions!
Warm and gentle hugs,

Pamela
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