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rconnell22
@rconnell22

Posts: 4
Joined: Apr 20, 2018

Scleroderma and FSGS Kidney Disease

Posted by @rconnell22, Thu, Apr 19 7:43pm

I would like to hear from anyone who has been diagnosed with both of these. Being told they are not correlated and doctor’s are stumped.

REPLY

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

Hello, I am a 43 yr old female in NY. I was diagnosed with FSGS in September of 2016. I have never fit the mold of symptoms. I have been on prednisone now for nearly the entire 20 months and although it seemed to help with my creatinine levels it has caused me a lot of side effects. I have also tried tacrolimus, rimuxitab, cellcept and now cytoxin along with a lower dose of prednisone. The scleroderma diagnosis was finally given in August of 2017 and again my symptoms haven't always lined up text book wise. I have been told these two autoimmune diseases are separate and not linked and my doctor's haven't been able to find any other cases like mine. I am currently trying to get some doctor's in Chicago to see if I could qualify for a stem cell transplant for the scleroderma and my Nephrologist has said there is no supporting documents that she has seen to see of it will help my kidneys. My kidney function is continuing to get worse and I am close to going on dialysis I am told. The doctor's are stumped, I have a set of specialists in the city I live in and also last summer went to NYC and met with another set down there.

Hi @rconnell22,

Thanks so much for writing back, and I can imagine how worrying it must be to not get any answers. I moved your message to the Kidney & Bladder group because I think you'll get more responses here. While we wait for @rosemarya to join in, I'm tagging Mentor @johnbishop as well, to see if he has any thoughts about a link between scleroderma and kidney disease.

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

Greetings @rconnell22. Here are a few thoughts related to your "my symptoms haven't always lined up text book wise" and "any other cases like mine" comments just in case they're helpful to your situation. They are based on my wife's experience with Scleroderma (diagnosed in late 1987 by a GI doc at Creighton University Hospital in Omaha).

1. My wife has been a member of two different support groups over the years and actively tracks this disease on social media
– Common theme: She's never encountered two people afflicted by this disease with the exact same symptoms
3. Receives regular kidney-function checks… so far so good
3. It's a complicated disease for which there are no easy medical solutions… doubly difficult when it's being camouflaged by other physical ailments
4. Keeping pace with the Scleroderma intel, patience (with your docs) and persistence (with what you want) are hallmarks for success

Also, I highly recommend Dr. Griffing's video (see the link posted above by our moderator). His presentation, more than anything else I've seen/read these past 30 years, provided me with a clear picture of where my better half fits into the sometimes-difficult-to-see Scleroderma BIG picture. Wishing you all the best!

PS: If you peruse the comments tied to the above video, you'll see a post that includes readable copies of Dr. Griffing's visual aides (a bit difficult to see clearly in the video)

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

Hello @rconnell22 ,

I have no medical background or training but I'm pretty sure it's not uncommon to have multiple autoimmune diseases and I'm just as sure they are all difficult to diagnose. I don't know if it's a possibility for you but Mayo Clinic is extremely good at diagnosing difficult to diagnose health problems with their team of specialists working together approach. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
http://mayocl.in/1mtmR63.

You might also find the following video helpful. What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I was able to find some information that supports that there is a link between scleroderma and kidney disease.

John Hopkins Scleroderma Center:
https://www.hopkinsscleroderma.org/scleroderma/comprehensive-care/

Sclero.Org site:
https://sclero.org/scleroderma/symptoms/renal/a-to-z.html

The Kidneys in Systemic Sclerosis (Systemic Scleroderma) PDF link:
https://www.sruk.co.uk/media/filer_public/fe/ee/feee565c-d004-48c4-9fdf-522d6e813478/kidney_factsheet_v2_rgb.pdf

Hoping you find some answers soon.

John

@kanaazpereira

Hi @rconnell22,

Thanks so much for writing back, and I can imagine how worrying it must be to not get any answers. I moved your message to the Kidney & Bladder group because I think you'll get more responses here. While we wait for @rosemarya to join in, I'm tagging Mentor @johnbishop as well, to see if he has any thoughts about a link between scleroderma and kidney disease.

Jump to this post

thank you very much, any info is appreciated

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

@rconnell22,
I am a liver/kidney transppant recipient. My kidney failure was acute, a result of my liver disease. It is the current thinking that my liver disease is autoimmune related. I also have vitiligo, also autoimmune disease. So, I understand the autoimmune connection.
I am familiar with prednisone, tacrolimus, cellcept I take them as antirejection meds. I need to get my labs drawn regularly to monitor the level in my blood, because these can also be hard on the kidneys.

I don't know about FSGS Kidney disease, and don't know the progression with or without the sclerderma.
Are your doctors communicating with each other? Or is each 'doing his own thing'?
Have you considered getting an appointment at Mayo for another opinion? My personal experience with Mayo is that they do 'think outside the box'. I was never treated as a textbook case. Just a thought.

Looking forward to hearing from you, and learning with you.
Rosemary

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

@csjolundjr, Thank you for sharing.
Hugs to your wife.
Rosemary

The following comments are not meant to diminish the pain and suffering that are reflected in this post, or in any way to denigrate the treatment standards of care that have been developed over the years. Without these treatments, many would suffer even more than they have. These comments are only meant to provide some hope for those who are afflicted with this awful disease.

My Mother was diagnosed with scleroderma in the early 1990's. She will be 99 in August 2018. At the time, she was told to join a support group and get her affairs in order. We asked why. The reply was that everyone who took the prescribed drugs experienced serious health issues and didn't live long. She refused to join a support group. As she put it: " I don't want to sit around with a bunch of people talking about "my scleroderma". Instead I want to experience whatever time I have left." She refused the prescribed "standard of care" and continued to teach elementary school until she was in her 89th year, backpacked with my Dad, ran the family household, played volleyball on Tuesday and Saturday evenings with the 30 to 50 year old mens' volleyball teams, and so forth. This year, she has started to have some of the symptoms that were predicted about 25 years ago. She still takes no medications, except certain supplements, pre- and probiotics, and so forth. Her current physician says she probably has another 5 years in her. By the way, due to the tightening effects of scleroderma, she looks as though she might have had a face lift (which she has not). I realize that Mom's version of scleroderma may be different from many others.

One more aspect, Mom and Dad were the sole hands on designing and building their own home in the 1940's, maintaining the vehicles, rototillers, mowers, digging a well, growing and preserving our own fruits and vegetables, fowl, rabbits, and more. Dad had been First Mate on ships in WWII which meant he was involved with all sorts of toxins in maintaining the ships. While building and maintaining their home, both had their hands in kerosene and other petroleum products, installing fibreglas insulation, roofing, painting the house, yard work (back then pesticides were in use although they used much lower amounts than were recommended, and after a few years, stopped using any). Dad was diagnosed with chronic lymphocytic leukemia also in his 70's. He took control, both changed their eating and exercise habits, and Dad also long outlived the diagnosis of 6 months to survive. He refused the standard of care chemo, etc. He was active and lived to 88, working in the yard, fishing, and enjoying family and friends. At his death, his "numbers" were the same as they had been at the initial diagnosis. So, it has been postulated that their scleroderma and leukemia may have arisen out of compromised immune systems from the poisons both were exposed to.

My siblings and I would like to know what symptoms to expect as Mom's scleroderma increases its toll on her and how we can help her to remain comfortable.

@gmaapple

The following comments are not meant to diminish the pain and suffering that are reflected in this post, or in any way to denigrate the treatment standards of care that have been developed over the years. Without these treatments, many would suffer even more than they have. These comments are only meant to provide some hope for those who are afflicted with this awful disease.

My Mother was diagnosed with scleroderma in the early 1990's. She will be 99 in August 2018. At the time, she was told to join a support group and get her affairs in order. We asked why. The reply was that everyone who took the prescribed drugs experienced serious health issues and didn't live long. She refused to join a support group. As she put it: " I don't want to sit around with a bunch of people talking about "my scleroderma". Instead I want to experience whatever time I have left." She refused the prescribed "standard of care" and continued to teach elementary school until she was in her 89th year, backpacked with my Dad, ran the family household, played volleyball on Tuesday and Saturday evenings with the 30 to 50 year old mens' volleyball teams, and so forth. This year, she has started to have some of the symptoms that were predicted about 25 years ago. She still takes no medications, except certain supplements, pre- and probiotics, and so forth. Her current physician says she probably has another 5 years in her. By the way, due to the tightening effects of scleroderma, she looks as though she might have had a face lift (which she has not). I realize that Mom's version of scleroderma may be different from many others.

One more aspect, Mom and Dad were the sole hands on designing and building their own home in the 1940's, maintaining the vehicles, rototillers, mowers, digging a well, growing and preserving our own fruits and vegetables, fowl, rabbits, and more. Dad had been First Mate on ships in WWII which meant he was involved with all sorts of toxins in maintaining the ships. While building and maintaining their home, both had their hands in kerosene and other petroleum products, installing fibreglas insulation, roofing, painting the house, yard work (back then pesticides were in use although they used much lower amounts than were recommended, and after a few years, stopped using any). Dad was diagnosed with chronic lymphocytic leukemia also in his 70's. He took control, both changed their eating and exercise habits, and Dad also long outlived the diagnosis of 6 months to survive. He refused the standard of care chemo, etc. He was active and lived to 88, working in the yard, fishing, and enjoying family and friends. At his death, his "numbers" were the same as they had been at the initial diagnosis. So, it has been postulated that their scleroderma and leukemia may have arisen out of compromised immune systems from the poisons both were exposed to.

My siblings and I would like to know what symptoms to expect as Mom's scleroderma increases its toll on her and how we can help her to remain comfortable.

Jump to this post

Gmapple…I believe that your mother not using meds did not suffer what I believe was my issue. I have been cutting back on my meds. I try to stop one pill at a time. I read today that amitriptyline has been found to cause Alheimers. I am stopping all meds. Don't try it unless you tell your Dr. My Ra Dr was not happy. It has been about 2 mos since I stopped my weekly shots and i feel so good. I am up to over a mile a day walking with my dog. If I have pain I use Tylenol or Advil
Two months ago I could not walk even a block.. I am 76 yrs old. I may just be in remmisition. I asked my nurse who also has RA if she ever has remissition. She said NO. Ok then I said to her….maybe my very very bad 2 falls, one where I crushed a Vertibra must have helpef me

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

Hi
Thank you for sharing your story. We have a really good Nephrologist who has been aligning all of the specialists and she has been a big advocate for us so far. We are trying to get a meet set up with some stem cell doctor's at Northwestern and if it falls through our next step is to try to set something up at Mayo. Right now we are in this spot where medications and treatments aren't working and we need to look at something new or different to try. We have been heard the term 'medical mystery' more then I can remember. We are also trying to get a full gene study done peding insurance approvals.

@kanaazpereira

Hello @rconnell22,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect, and thank you for sharing your information. Although I couldn't find fellow members with both conditions, I'd like to introduce you to Mentor @rosemarya, who is a kidney transplant recipient, and she may have some more information for you.

In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is some more information:
– Renal disease in systemic sclerosis (scleroderma): https://www.uptodate.com/contents/renal-disease-in-systemic-sclerosis-scleroderma-including-scleroderma-renal-crisis
– FSGS: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693

I'm also tagging @lila25 @joyful1 @dash99999 @ctkoontz @mooneagle @aussiemagpie @gmaapple @csjolundjr @mariann @sonya_nc @rinstaffordaz, in this discussion. Perhaps there are some who can speak to FSGS kidney disease and scleroderma.
You may also wish to view this Video Q&A , where Mayo Clinic rheumatologist, Dr. Leroy Griffing talks about scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rconnell22, could you share a few more details about yourself? When were you diagnosed with focal segmental glomerulosclerosis (FSGS)? Have your doctors outlined any treatment plan or next steps?

Jump to this post

@rconnell22, It sounds like you and your doctors do have a plan for some next steps. I hope that that you and they will learn something that will lead to a manageable treatment for you.
We will continue to watch, with you, for other members to share their experiences with Scleroderma and FSGS Kidney Disease.
Keep in touch, and let us know what you learn.
Rosemary

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