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Scleroderma and CKD (Chronic Kidney Disease)


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#1 rugbybirds

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Posted 03 March 2013 - 02:04 PM

Hi, I have had Scleroderma for 4 years. I have lots of gastro issues, lung fibrosis, Raynaud's, arrhythmias and joint problems.

 

Last week I was diagnosed with chronic kidney disease stage three. I was wondering if this was related to the Scleroderma? I am not due at the Royal Free until June.

 

Thanks.



#2 Joelf

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Posted 03 March 2013 - 11:49 PM

Hi Rugbybirds,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Scleroderma for the last four years and have had so many health problems. I have lung involvement and painful joints, so can empathise with you; although thankfully, I've not experienced renal problems.

 

I've included a link to our medical page on Kidney (Renal involvement) to give you more information. I'm afraid I have no actual medical training, so can't advise you as to whether your kidney disease is related to having Scleroderma; however, perhaps it would be possible for you to contact The Royal Free either through your general practitioner or by ringing them directly (they have a number for Scleroderma enquiries) and see whether you could make an earlier appointment to see them, rather than having to wait until June.

 

Now that you've found our forums, do please keep posting.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 04 March 2013 - 02:58 AM

Hello Rugbybirds

 

Welcome to the forums!

 

Yes indeed, scleroderma can cause renal failure but obviously I can't say whether it's caused yours.

 

In view of the new development with your kidneys I would, as Jo has suggested, ring the Royal Free specialist nurses (0207 8302326), explain the situation to them and ask if they can help get you in sooner.

 

Let us know how you get on with your appointment and take care.


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#4 miocean

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Posted 04 March 2013 - 07:17 AM

Rugybirds,

Having been through scleroderma renal failure, 5 12 year of dialysis, and a kidney transplant I would make sure I took every precaution to hold off kidney failure as long as possible. You need to have a nephrologist and follow all her directions. Your diet should be low salt, low potassium, low protein. You need to get a home blood pressure machine and take your blood pressure regularly. If it goes over 140 tell your doctor. Note any swelling of the legs or ankles and report it to you doctor.

You can stay at a stage for a while, everybody varies. You should be looking at you creatine, BUN and GFR (glamular filtration rate) numbers (the names may be different in the U.K..) Get copies of all your labs. In the U.S. when you GFR gets to 15% you usually start dialysis. Before then, if your kidneys are failing the doctor may have an access put in your body so you will be ready for dialysis when you need it. There are several different kinds of dialysis, you should be discussing these options with your doctor.

I hope you never have to head down that road, it is not a fun trip. If you are told your kidneys are failing it might be time to start a dialogue with family and friends about the possibility of a living donation.

The good news is that there are new treatments for scleroderma renal failure and that the kidneys can come back. I wish you the best, feel free to message me if you want. I am not usually on the U.K. forum, just happened to catch the CRD in the title. Best wishes.

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#5 rugbybirds

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Posted 04 March 2013 - 09:23 AM

Thanks for your replies. I have taken your advice and asked the Royal Free for an earlier appointment.

Everything that I have read about kidney involvement refers to renal crisis, which isn't what I have. Maybe I'm just unlucky. Or I was wondering if any of my medication could cause it? I take: MMF, Hydroxychlorine, Prednisolone, Omepresole, ranitidine,gabapentine, domperidone, etc.


I was recently hospitalised for ten days as my neutrophils dropped to zero and I caught an infection. My Gamma GT level is raised at 264.


How common are kidney problems in scleroderma? I can't seem to find much info.


Thanks for your help, I have not really looked for much info before, just listened to what the doctors said,but I now feel that I should become a little more proactive!


I am currently only working one day a week as I feel so lousy for much of the time. Roll on the summer!



#6 Joelf

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Posted 04 March 2013 - 01:05 PM

Hi Rugbybirds,

 

It is a very good idea to be proactive with this disease, particularly as it is so complex and difficult to diagnose.

 

As well as the earlier link I gave you, I've found another link from our medical pages Anemia in Kidney Disease and Dialysis which I hope you'll find informative.

 

I do hope you can manage to make an earlier appointment for The Royal Free and do let us know how you get on.

 

Kind regards,


Jo Frowde
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#7 Shelley Ensz

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Posted 05 March 2013 - 05:27 PM

Hi Rugbybirds,

 

I haven't looked up any of your other medications at all so I can't say one way or another if they can cause kidney problems, but I do know that there are significant warnings for scleroderma patients against taking prednisolone.

 

Please see our page on:Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma, where it says (among other things), "Corticosteroids strongly increase the short-term risk of developing scleroderma renal crisis! It also causes a 70 percent increased risk of developing pneumonia."

 

You would certainly want to print that page off and discuss it with your scleroderma expert, since you are already experiencing kidney disease. Also ask your pharmacist if any of the other meds you are on can affect kidney function.

 

At the very least, you and your doctors should be completely aware of the meds you are taking that might be worsening your kidney function and discuss the risk/benefit ratio given your particular health issues.

 

I want to add, I know you wouldn't even dream of it, but for others who might stumble across this thread, never ever never stop taking steroids without the consent and specific tapering advice of your physician, because reducing or stopping steroids in the wrong way can cause very serious health problems.

 

:emoticons-group-hug:


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Shelley Ensz
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