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Prognosis of scleroderma renal crisis: a long-term observational study.


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#1 Joelf

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Posted 15 October 2012 - 11:59 PM

Prognosis of scleroderma renal crisis: a long-term observational study.

Short-term prognosis of SRC has improved, but long-term prognosis remains disappointing. Plasma exchange (PEx) in addition to ACE inhibitors seems to be a therapeutic option in patients with SRC who develop micro-angiopathy or are intolerant to high doses of ACE inhibitors. Nephrol. Dial. Transplant. 2012. (Also see: Scleroderma Kidney Involvement)

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#2 Sweet

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Posted 16 October 2012 - 02:15 PM

Thank you
Warm and gentle hugs,

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#3 Mzali

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Posted 22 October 2012 - 09:35 PM

Hi my mom was diagnosed with scleroderma renal crisis (SRC) and she was given Captopril for about a month but she had an allergic reaction to it. She was given amlodipine after that; her creatine level was stable at 1.5 and then it jumped to 3.8. It goes up and down, she always has pain in her lower back and I think it's her kidneys.

I want to know if there any other medicine other than ace inhibitors for SRC; please let me know or if someone has a similar story to shed some light on for us.

Thank you.

#4 Joelf

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Posted 23 October 2012 - 09:05 AM

Hi Mzali,

Welcome to these forums!

I'm sorry to hear that your mother has suffered SRC. Thankfully, I haven't experienced this myself, so can't advise you, but I've included a link to our medical page on Renal Failure Prevention and Treatments which I hope you'll find informative.

We do have other members who've experienced SRC; one of our members, Miocean, has undergone a kidney transplant and may be along soon to offer you some first hand advice.

Kind regards,

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#5 miocean

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Posted 23 October 2012 - 09:04 PM

Hi all,
I did not like the statistics in this article and am glad to say that I am one of the fortunate ones who beat the odds (so far.) I never heard of the Plasma Exchange mentioned in the article but read it has risks.

Hi Mzali,
I am also sorry your mother is in renal crisis. I hope she is in the care of a scleroderma specialist and a nephrologist.

I didn't have SRC. I went directly to ESRD. My kidneys failed suddenly during a crisis where I stopped breathing and my heart stopped. Fortunately I was hospitalized at the time. I may have been experiencing kidney function decline for a week prior but it wasn't picked up in time to treat. I was on dialysis for 5 1/2 years before receiving a cadaver kidney transplant 2 1/2 years ago.

I would check with your mother's doctor but from my experience she should be drinking a lot of liquid and following a diet, consisting of small amounts of protein, no potassium or phosphorus. She should also be following a low salt diet. Besides her creatine, an important factor is GFR (glamular filtration rate) as this would show when dialysis is necessary. Your nephrologist can interpret this number for you from her lab work.

It is very important to monitor blood pressure! If you don't have a home blood pressure machine get one, take hers daily and if it gets high notify the doctor immediately. I did this per doctor instruction but he didn't tell me what high was and I was naive at the time so the top number was 200 when I went into crisis mode. It is very important to control blood pressure as high blood pressure can cause renal failure. To this day I take a beta blocker.

Wishing both of you the best.

miocean
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#6 Shelley Ensz

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Posted 24 October 2012 - 01:11 PM

Hi Mzali,

I'm sorry that your mother has scleroderma, and renal involvement. As Miocean said, I also hope she is checking her blood pressure every day as that is a way to detect what are often otherwise silent changes.

As for her back pain, her doctor should be told about it. It might be caused by kidney problems or it may be something else that could be treatable. For example, she may need a new bed or better shoes, if it is a posture-related issue. I am prone to all sorts of lower back pain, and all by itself it can ruin a person's quality of life. So if it is a continuing issue for her, please make sure it gets checked out thoroughly. It is just too easy for us, or even some of our doctors, to attribute everything to what we already know is wrong....and sometimes we are mistaken.

In any event, I hope she is able to improve, and feel a little better.

:emoticons-group-hug:
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Shelley Ensz
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#7 Amanda Thorpe

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Posted 06 November 2012 - 03:58 AM

Hello Mzali

Welcome to the forums and my best wishes to you and your mother.

As Shelley has said get her back pain checked out, there are so many possible benign causes and then some not so benign. Obviously I have no idea what's causing your mother's but here's a cautionary tale about my mother...

Ma has had 3 heart attacks and moderate to severe lower back pain was always a symptom after the first heart attack which came unannounced. This WebMed article explains that women often have unusual symptoms of heart attack rather than the typical ones we associated with heart attack. I know for sure Ma's intense and persistent lower back pain is a signal she's brewing up a heart attack and we've had to argue this point in A&E before when doctors have wanted to dismiss this despite her prior heart attacks!

Whatever the cause this type of pain can interfere with quality of life so I hope your mother finds the cause and therefore a remedy.

Take care.
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