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Jean S

Newly Diagnosed, Have Questions

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Hi,

 

I have recently been diagnosed with Scleroderma by a scleroderma specialist. She is re-running all the blood work (initially run by local rheumatologist)  to confirm whether it's limited or diffuse. Looking back now, it seems I've had symptoms over the last 2 years but only recently started progressing. I developed Raynauds in October and immediately started getting sores on my fingers that wouldn't heal, which finally sent me to my primary care physician.

 

I want to ask about other symptoms I've been having to find out if this is something any of you may be experiencing. I have intense itching, day and night (keeps me awake at night) that is driving me crazy. Sometimes it itches so bad I want to scratch my skin off!  I have also had skin darkening around my abdomen and my upper back and swollen lymph nodes in my neck.

 

To say the least, I am very frightened of the unknown and what to expect will happen to me. I am scheduled for a pulmonary function test and echo. So far the GFR bloodtest for kidney function came back very low, is this common? Does this mean it is diffuse scleroderma? Still waiting on the rest of the tests.

 

Any advice or support you could give would be very much appreciated!

 

Thanks,

Jean

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Hi Jean,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with scleroderma and I can understand how worried and alarmed you feel. I've included a link to our medical page on Skin Involvement, which includes information about Itching (Pruritus) and I hope this will be interesting and helpful to you.

 

The good thing is that you have consulted a scleroderma expert; we do recommend that our members do this, as it does mean that you should be treated by someone who understands the complexities of the disease. Also you're having pulmonary function tests and an ECHO, which is important to ascertain whether there's any internal involvement. I would just say that the results of any blood tests are not always conclusive and a positive test doesn't necessarily mean that you'll go on to develop the full blown disease. The reverse is also true.

 

Please note that apart from an out of date first aid certificate and a fondness for telling my medical team how to do their job, I have no medical training; however, it's possible that the skin involvement you describe could possibly relate to morphea, which is a type of localised scleroderma and treatable with UVA1 phototherapy, which is is now the recommended first-line treatment for it. Your scleroderma expert should be able to further advise you about any treatment he recommends.

 

Unfortunately, stress and anxiety are the very worst things for autoimmune diseases and can actually exacerbate the symptoms. Easy to say, I know, but it is important that you try to find a way to lesson the worry that you're feeling at the moment and concentrate on getting your test results and then take it from there after consulting your scleroderma specialist.

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I'm not aware that blood tests can differentiate between limited and diffuse.  Can anyone enlighten me?

 

Itching can be horrible.  As far as I am aware, treatments could include antihistamines, creams and lotions or possibly nerve desensitifying medication.  All of these have benefits and side effects, but all are worthy of consideration.

 

Patches of darkening skin does sound like morphea, but time and tests will tell.

 

Kidney test results are worrying.  Could you tell us which values were low?  I do remember worrying about mine but found out later that it was not such a concern.

 

My lung tests and echos have so far been normal so I'm encouraged by these.

 

It's too early to tell whether it is diffuse, but even if it is, many forum members have lived for 20 years or more with the correct treatment.

 

Good luck and I hope it turns out for the best.

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Maybe I assumed the blood test would show because the physician didn't elaborate which form I had, I thought we were waiting on blood tests for the answers. 

 

The EGFR was 50, is that something I should be worried about?

 

Also, does anyone wake up at night practically choking on bile and then the next day have a severe cough? I am on medications for heartburn, but they don't seem to be stopping this and it doesn't feel like heartburn at all when it's happening.

 

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Hi Jean,

 

I can understand that you feel concerned about your kidney results, but the best person to advise you is your scleroderma expert.  Because the nature of scleroderma is so varied, it's very difficult to diagnose limited or diffuse scleroderma purely from the blood test results and often a wait and see attitude is taken, as even with the disease active no one knows how anyone will fare or what symptoms they will have.

 

Interestingly, the symptoms you describe sound as though they do relate to heartburn ( reflux). Although I'm not a doctor, my husband (who doesn't have scleroderma) suffers with exactly the same symptoms of choking on bile and coughing and has been diagnosed with acid reflux and hiatus hernia. (He has found a medication which does help a bit, but we tend to have our main meal at lunchtime, if possible and that has helped him). I've included a link to our medical page on Reflux (Heartburn) and GERD, which also includes a section on prevention and treatment and I hope this will be informative and helpful to you.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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