I am new, and I have some questions about FSGS

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I am new, and I have some questions about FSGS

Postby daubysangel » Tue Jun 29, 2004 2:11 am

I was diagnosed with FSGS in 1999, at the age of 17. I have never met anyone with this disease, and all of the stories I hear tend to be sad ones. I have had this disease for about 5 years now, and still have relitivley (sp) good health, for the most part. I am interested in hearing for others with this disease, and hearing their symptoms. Has anyone with this disease become pregnant, and had a normal pregnancy? Is there anyone else out there that is still having pretty good health despite their disease? Does any sort of treatment help you more than others? I would be interested in any replies. I was on Cyclosporine for a short period of time, as treatment. I am now starting myocyclene, and taking ace inhibitors, and beta blockers. Thank in advance for any replies. I am just interested in knowing more about the disease, and those who live with it. My e-mail is Daubysangel@comcast.net. Thanks! ~Cari
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websites and info. http://www.chg.duke.edu/patients/fsgs.ht

Postby Bruno » Tue Jun 29, 2004 12:45 pm

i didn't know what fsgs was so i looked it up and found some info. that might be useful along with support groups and new research being done. i hope it helps... :wink:

How do glomerular diseases interfere with kidney function?
Glomerular diseases damage the glomeruli, letting protein and sometimes red blood cells leak into the urine. Sometimes a glomerular disease also interferes with the clearance of waste products by the kidney, so they begin to build up in the blood. Furthermore, loss of blood proteins like albumin in the urine can result in a fall in their level in the bloodstream. In normal blood, albumin acts like a sponge, drawing extra fluid from the body into the bloodstream, where it remains until the kidneys remove it. But when albumin leaks into the urine, the blood loses its capacity to absorb extra fluid from the body. Fluid can accumulate outside the circulatory system in the face, hands, feet, or ankles and cause swelling.
What are the symptoms of glomerular disease?
The signs and symptoms of glomerular disease include
• proteinuria: large amounts of protein in the urine
• hematuria: blood in the urine
• reduced glomerular filtration rate: inefficient filtering of wastes from the blood
• hypoproteinemia: low blood protein
• edema: swelling in parts of the body
One or more of these symptoms can be the first sign of kidney disease. But how would you know, for example, whether you have proteinuria? Before seeing a doctor, you may not. But some of these symptoms have signs, or visible manifestations:
• Proteinuria may cause foamy urine.
• Blood may cause the urine to be pink or cola-colored.
• Edema may be obvious in hands and ankles, especially at the end of the day, or around the eyes when awakening in the morning, for example.
How is glomerular disease diagnosed?
Patients with glomerular disease have significant amounts of protein in the urine, which may be referred to as "nephrotic range" if levels are very high. Red blood cells in the urine are a frequent finding as well, particularly in some forms of glomerular disease. Urinalysis provides information about kidney damage by indicating levels of protein and red blood cells in the urine. Blood tests measure the levels of waste products such as creatinine and urea nitrogen to determine whether the filtering capacity of the kidneys is impaired. If these lab tests indicate kidney damage, the doctor may recommend ultrasound or an xray to see whether the shape or size of the kidneys is abnormal. These tests are called renal imaging. But since glomerular disease causes problems at the cellular level, the doctor will probably also recommend a kidney biopsy--a procedure in which a needle is used to extract small pieces of tissue for examination under different types of microscopes, each of which shows a different aspect of the tissue. A biopsy may be helpful in confirming glomerular disease and identifying the cause.
What causes glomerular disease?
A number of different diseases can result in glomerular disease. It may be the direct result of an infection or a drug toxic to the kidneys, or it may result from a disease that affects the entire body, like diabetes or lupus. Many different kinds of diseases can cause swelling or scarring of the nephron or glomerulus. Sometimes glomerular disease is idiopathic, in that it occurs without an apparent associated disease.
Focal segmental glomerulosclerosis (FSGS) describes scarring in scattered regions of the kidney, typically limited to one part of the glomerulus and to a minority of glomeruli in the affected region. FSGS may result from a systemic disorder or it may develop as an idiopathic kidney disease, without a known cause. Proteinuria is the most common symptom of FSGS, but, since proteinuria is associated with several other kidney conditions, the doctor cannot diagnose FSGS on the basis of proteinuria alone. Biopsy may confirm the presence of glomerular scarring if the tissue is taken from the affected section of the kidney, but finding the affected section is a matter of chance, especially early in the disease process, when lesions may be scattered.
Confirming a diagnosis of FSGS may require repeat kidney biopsies. Arriving at a diagnosis of idiopathic FSGS requires the identification of focal scarring and the elimination of possible systemic causes such as diabetes or an immune response to infection. Since idiopathic FSGS is, by definition, of unknown cause, it is difficult to treat. No universal remedy has been found, and most patients with FSGS progress to ESRD over 5 to 20 years. Some patients with an aggressive form of FSGS proceed to ESRD in 2 to 3 years. Treatments involving steroids or other immunosuppressive drugs appear to help some patients by decreasing proteinuria and improving kidney function. But these treatments are beneficial only to a minority of those in whom they are tried, and some patients experience even poorer kidney function as a result of therapy. ACE inhibitors may also be used in FSGS to decrease proteinuria. Treatment should focus on controlling blood pressure and blood cholesterol levels, factors that may contribute to kidney scarring.
Minimal Change Disease (MCD) is the diagnosis given when a patient has Nephrotic Syndrome and the kidney biopsy reveals little or no change to the structure of glomeruli or surrounding tissues when examined by a light microscope. Tiny drops of a fatty substance called a lipid may be present, but no scarring has taken place within the kidney. MCD may occur at any age, but it is most common in childhood. A small percentage of patients with idiopathic nephrotic syndrome do not respond to steroid therapy. For these patients, the doctor may recommend a low-sodium diet and prescribe a diuretic to control edema. The doctor may recommend the use of nonsteroidal anti-inflammatory drugs to reduce proteinuria. ACE inhibitors have also been used to reduce proteinuria in patients with steroid-resistant MCD. These patients may respond to larger doses of steroids, more prolonged use of steroids, or steroids in combination with immunosuppressant drugs, such as chlorambucil, cyclophosphamide, or cyclosporine.
http://www.chg.duke.edu/patients/fsgs.html

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FSGS

Postby nycpetit » Tue Jun 29, 2004 8:56 pm

There are a few of us here who have FSGS...I do, as well as interstitial nephritis...with the two combined I lose tons of protein each day..about 15 grams. I did the round of steroid treatment, but it never lowered the protein loss to less than 4 grams a day. As for the cyclo, we were going to try that, but by the time I decided I was ready, my doc said forget it. It's got such a known toxicity to the kidneys and I was down to about 20% function by then.

I was listed on the transplant list in Jan. I took ACE inhibitors for the last eight years, and for the last year and a half, steroids every day, phosphorus medication, mycelex, lipitor, zetia, epogen, lasix, now citra-k, well, I can't remember what else.

I am slated to get a transplant this summer..July..I hope...and we'll see..FSGS does often come back in the transplanted kidney, but not always, and my donor is not a blood-related relative.

My doctor has some patients with FSGS that he has kept stable on 5 mg of steroids a day..that was our hope for me..but it didn't happen. I still think it's possible I lost more function because of the steroids..my decline has been much more rapid since I started taking them than at any other time in the last eight years...i have a severe questioning nature when it comes to all doctors. Can't tell you how many times I have caught doctors out on near major mistakes.

As for pregnancy. Well, I would be careful if your function is not real strong. I know that post-transplant (when the drugs have been lowered) you can often become pregnant but you need to stop the ACE inhibitor then as that has been known to cause birth defects in the first three trimesters.

Any other questions?
N
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Postby daubysangel » Wed Jun 30, 2004 4:21 pm

Thank you both for your replies. I have found info on the web as well, thank you for posting. As far as steroids making your kidney function worse, I tend to believe it. I am scared of steroids. I think they do more harm than good. My Dr did not want to do steroid treatment with me, so he put me on the Cyclosporene (sp). I took it for 3 months, and took myself off of it. (I too, do not believe everything the Dr's say). When I did go back to the Dr my function was better. Good enough to call it 'remission'. My remission lasted almost 3 years. I went in for a check up last month and gave a +4 on my urine test, but Creatinine (sp) is normal. So, I am to start meds again. They are going to try me on Myocyclene 100 mg. This is a treatment for auto-immune diseases. My Dr thinks there may be a link between aauto immune diseases (like Lupus, and Rhuemetoid Arthritis) and FSGS. So, we are trying this "new" treatment to see what it will do for me. There are some web-sites my Dr gave me about this new treatment. www.roadback.org and www. drmirkin.com. Again, thank you both for your replies. I wish you well with your transplant. I hope that you will be in better health, and hope the disease does not return. Feel free to contact me at anytime. daubysangel@comcast.net ~Cari
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Hersheypark happy

Postby nycpetit » Wed Jun 30, 2004 4:46 pm

I see you are a PA person..me TOO...I was born in Harrisburg....

as for the steroids, I am glad someone else feels as I do. I feel my function went down hill far more rapidly after the steroid dosing than without....after all, I had six years on the ACE inhibitor only..and only 18 months on the steroids upon which i lost a lot of function rapidly..the cyclo was going to be next..but I was not too keen on it..and of course, I'll be on both regardless after the transplant which I am trying to avoid...but don't know that my center will go for it....

good luck to you too..and let me know how the new StormRider ride is this season.... :wink:
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Postby daubysangel » Wed Jun 30, 2004 7:01 pm

The storm rider looks good, but I probably won't try it. Living so close to the park kind of makes it lose it's appeal, you know? lol Where do you live now? NYC?
Since you are from the area, what do you think of Hershey Medical Center? That is where I go for Nephrology, and as I think I told you before, I have had 3 different Drs in the five years since I have been diagnosed. Each one has a different story as to why I have this disease, and what should be done for it. That is alot of the reason why I tend not to trust them fully. I think alot of it is opinion, and while they are far more educated than I am, sometimes, I think they are wrong. I am thinking of switching Hospitals, and Specialists. There are many other hospitals in the area, as you know, so I would be able to do that easily. I really don't care for the one I have now. I have heard a lot of negative things about the med center in general, and was curious of your opinion. Thanks again for responding. ~Cari
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Re: I am new, and I have some questions about FSGS

Postby LadySycamore » Thu Jul 01, 2004 12:00 am

daubysangel wrote:I was diagnosed with FSGS in 1999, at the age of 17. I have never met anyone with this disease, and all of the stories I hear tend to be sad ones. I have had this disease for about 5 years now, and still have relitivley (sp) good health, for the most part. I am interested in hearing for others with this disease, and hearing their symptoms. Has anyone with this disease become pregnant, and had a normal pregnancy? Is there anyone else out there that is still having pretty good health despite their disease? Does any sort of treatment help you more than others? I would be interested in any replies. I was on Cyclosporine for a short period of time, as treatment. I am now starting myocyclene, and taking ace inhibitors, and beta blockers. Thank in advance for any replies. I am just interested in knowing more about the disease, and those who live with it. My e-mail is Daubysangel@comcast.net. Thanks! ~Cari


Hello Cari.

I was dianosed in 2001 when I started getting edema in my legs and fluid around the heart. I am assuming that you are not on dialysis since you did not mention it.

There are two types of FSGS (primary and secondary):
http://renux.dmed.ed.ac.uk/EdREN/EdRenI ... Long2.html

You can also pull up your favorite search engine and do some light research on FSGS. IMO, it's important to be knowledgable about your health. It just makes things a "bit" more tolerable, I think, instead of perhaps feeling overwhelmed by everything.

All the best to you. 8)
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Pregnacy and FSGS

Postby Cynthia » Thu Jul 01, 2004 3:45 pm

[b]HI my name is Cynthia I'm from Michigan and I have FSGS and I found out when I was pregnant with my son. I then got pregnant again with my daughter. Pregnacy can he hard with this, but since you know the doctors will know what to do that was the problem with my son they didn't know I had FSGS. So with my daughter it was a lot easier cause they knew what and how to treat me. I had alot of other complications that had nothing to do with the FSGS like gestational diabetes, which also complicated the FSGS. They sent me to a doctor that dealt with pregnacys like mine and it was ok. So Yes you can have kids with FSGS hope I helped a little . :D

Cynthia

If you want to talk about it you can usually find me in the chat room at www.dialyze.org/chat[/b]
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Hershey Medical center

Postby nycpetit » Thu Jul 01, 2004 4:24 pm

I can't really help you with that..I left PA in 1985 to move to NYC..and have never moved back...I was young then..i go back on occasion as my grandmother still lives in the house I grew up in..and my cousin got his medical degree in PA, and interned at Hershey Medical..from what I had read on the web..it seemed like a decent facility..certainly better than Harrisburg Hospital..ever looked into anything in Philly? Or how about Johns Hopkins..that is a GREAT center.

My center at NYU Medical is horrible..honestly..they are dumb and dumber..I know more about medications than they do..they've no clue about anything..including who I am from one week to the next..the only thing keeping me there is my nephrologist whom I trust and like..but he's not the surgeon or the transplant center unfortunately. Everytime I ask them questions they are uncomfortable...I've had to complain numerous times for them to get their butts in gear...it's such a long story it's not worth going into...

I have a million things I've researched...non-steroidal treatments..etc..but I've no idea if they'll listen to any of them...I have been on the steroids for such a long time..off them right now to prepare me to go back on them sometime this month post-transplant...but all in all...they've wasted a lot of my time..I'd have gone to the Mayo Clinic in Rochester or Johns Hopkins if I'd known or had insurance that would have been accepted...most all of my problems were started as a result of insurance difficulties..I had to add a third job to get more acceptable insurance...bizarre way to get better....like...go get another job....great country we live in....

I'm venting now which is of no help..but I'd look into one of those two places I mentioned if you want better treatment...I'm not too familiar with a better place in PA..there are a few better ones in NY too..Montefiore (Where those twins are being separated) and Columbia Presbyterian....where basketball player Alonzo Mourning who has FSGS was transplanted in December of last year.

Hope this helps a little
Natalie
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FSGS in my case

Postby Robin in Hungary » Thu Jul 01, 2004 8:06 pm

Hi. I was diagnosed with nephrotic syndrome in May of last year, and FSGS after the biopsy. There are plenty of us around, actually.

I was put on what seems to be the standard first try - steroids (methyl prednisolone) - and for me it has worked so far, which is not so common for FSGS patients, I gather.

My proteinuria is down to half a gram a day - a year ago it was 16 grams -and I'm down to 4 mg of the pred every other day - my doctor is still optimistically aiming for 0 proteinuria. Also on ACE inhibitor (Tritace), Lescol for cholestorol, a mild diuretic, Rocaltrol (vitamin D), calcium, vitamin C, a stomach coater...

The steroids haven't been pleasant, I've experienced a host of side effects, but test results say they're doing what was hoped. I guess it happens sometimes - that's why they keep trying. I don't know what happens next or how long this situation may last... treatment seems to be lasting far longer than I had expected at the start.

I'm afraid I haven't discussed pregnancy with my doctor, since I'm over 40 and not intending to have children (I seem to recall her asking if we had any plans).

Best wishes for you - and your future family!


Robin in Hungary (not just trying to cope with kidney disease, but also doing it in a foreign language!)
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Postby jcave » Tue Jul 06, 2004 2:43 pm

I was diagnosed with FSGS after showing symptoms on my honeymoon in 1997. My husband gave me one of his kidneys in 2003 and I think I am doing well now, but it has definitely been a tough few years! I have taken so many meds, I cannot even remember them all...I hate Prednisone!!! (still on 5 mg). I still battle with my docs about meds..it is scary to have to put your body in the trust of the doctors all the time. :roll:
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Postby laura~r~ » Tue Jul 06, 2004 8:57 pm

:roll: hiya peeps

im 14 years old and live in thew north east of uk i was diagnosed with fsgs on march 12th 2004. I went to doctors with what i thought was flu. Ive been through some pretty bad times and am expecting more. Its hard for me as even tho my friends try they dont really understand. i am currently on cyclophosphamide eache month for 6 mnths also atenolol amlodopine co trixamoazole penicillin i was 80 mg of prednisolone but now its 60 ranitidine and frusemide. I was really scared at first but ive been talking 2 a couple of people with fsgs and it sorta makes me feel better. Proetein levels are going down in urine which is a good sign.
If anyone wants to chat my hotmail address is shnowdyshnowter@hotmail.com
take care~~~
laura~~~~~~ :roll:
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Re: Hershey Medical center

Postby LadySycamore » Mon Jul 12, 2004 6:10 pm

nycpetit wrote:I'm not too familiar with a better place in PA..there are a few better ones in NY too..Montefiore (Where those twins are being separated) and Columbia Presbyterian....where basketball player Alonzo Mourning who has FSGS was transplanted in December of last year.

Hope this helps a little
Natalie


From what I understand, University of Pennsylvania Hospital has the one of the best reps regarding renal care/transplant:

Penn Transplant Center:
http://www.pennhealth.com/hup/transplant/kidney/

And here's info on Hershey Medical Center:
http://www.hmc.psu.edu/transplants/team/index.htm

Hope this helps. :D
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