FSGS - does anyone have this?

[Meagain24]

waiting for a full diagnosis but now looking like I have this.

If you have had it, how has it been for you? When were you diagnosed & what was your EGFR at this point? How long before you went onto dialysis?

[Bet117 NKF Ambassador]

Hi Meagain,

I can understand your fears and concerns about your diagnosis. I am sure that every member of this community has felt them at one time or another.

I don't have FSGS but I do have Membraneous Nephropathy which is in the same family.

I also have a very close friend who was diagnosed with FSGS about 7 years ago.

Treating any kidney disorder is a process. We both had biopsies to identify the disorder and then were put on a treatment plan by our Nephrologists.

It takes time to identify what is best for each patient; medications, regular labs and monitor them carefully.

Diet is also a key point to helping the kidneys.

We were both lucky as neither of us required dialysis and are doing okay.

I am in the US and she is in the UK. We supported each other through labs, medications and feelings.

Let your close friends and family be there for you.

Until your nephrologist tells you that you are anywhere near that, don't go there.

Speak to him/ her and see what their medication plan is for you as well as your concerns. Also, see that your medical team all communicate with each other.

Bear in mind that every patient is different; what may be a successful and good choice for one person, may not be for another.

It's a process and a journey but you are not alone.

Please feel free to reach out to me at any time as I am happy to support you.

Positive Thoughts,

Bet

[bumblebee_tuna]

Hi Meagan,

FSGS is really just a pattern of kidney injury, there could be different reasons for the disease. Were you diagnosed with a kidney biopsy?

I have Familial (Genetic) FSGS, this form usually progresses slowly but there are types the move quite fast. I was diagnosed at age 20 and started dialysis at age 50. There are different medications that your doctor will try depending on the type of FSGS you have.

[Meagain24 in reply to bumblebee_tuna]

thanks so much for replying!

that’s a really good way to explain it & has made me understand it a bit better so thank you!

Yes a biopsy although so far only had a preliminary report, they are still waiting for some analysis to come back to see if they can find the cause.

One of my parents had a very similar issue, although at the time (40 years ago) they were given a vague diagnosis. It does seem very similar and unlikely that we would both have the same rare disease and it not be linked in some way.

Did they find out it was genetic for you by biopsy or did you have genetic testing done? This will be next for me after biopsy results. I’m very worried it’s something my child will get and concerned about a possible future child.

What medication were you given? So far they have mentioned blood pressure tablets (although I don’t have high blood pressure but believe it can still help). What EGFR did you have when diagnosed?

Thanks for your help!

[bumblebee_tuna in reply to Meagain24]

Mine was pretty clear that it's genetic, I have a parent that went through kidney failure and I also have a sibling showing some signs of the disease. I did do a genetic test, there are multiple genes that are associated with FSGS (mine is ACTN4).

The main concern for the nephrologist is if you have proteinuria, if you do he/she will try to lower it with drugs (BP medication or Farxiga). Some forms of FSGS are due to the immune system attacking the kidney and are treated with Prednisone and immunosuppressants. For the genetic variants this treatment is usually not effective.

[Meagain24 in reply to bumblebee_tuna]

Thanks for replying.

I do have Proteinuria which I’m really worried about. Do you have this? Do you know how effective the medication for this usually is?

I also have a parent that had kidney failure, so thinking this might be genetic too. Although nephrologist said it might not be which I find hard to believe.

[nlfproductions in reply to Meagain24]

I have proteinuria and I am on a blood pressure medicine and also a medication called Farxiga which also helps with protein loss. Steroids like prednisone are also used very commonly but I am steroid-resistant, so it didn't work for me. It depends on your body and your amount of loss. My father just takes a low dose of blood pressure medicine and is stable, whereas I am on 2 medications and my function is still declining.

[Meagain24 in reply to nlfproductions]

Did they help to reduce your protein?

I was told there wouldn’t be any benefits to steroids for me because the inflammation I have isn’t active. Not sure what this means!

[nlfproductions in reply to Meagain24]

Yes, it has helped reduce my protein a ton. When I started taking medicine my had 8 grams of protein and now I only have around 4.5 grams.

[bumblebee_tuna in reply to Meagain24]

NephCure is a good resource for FSGS

nephcure.org/about/what-we-do/

[nlfproductions in reply to bumblebee_tuna]

Hello!! I got diagnosed with Genetic FSGS as well 3 years ago. I am currently in stage 3a and my doctor said if my levels aren't getting better in 2-3 years, I will need to look for a transplant or start dialysis. Is it supposed to be slower because mine seems like it is not? What has been your experience with treatment?

[Meagain24 in reply to nlfproductions]

I’m really not sure, it sounds like there are different types that are faster/slower. I’m still awaiting full biopsy results so hoping to get a bit more info.

How does your doctor know where you’ll be in 2-3 years? I got the impression that it’s difficult to predict how quickly it will deteriorate

[nlfproductions in reply to Meagain24]

He showed me a graph about my progress over the last 3 years and the data and predicted a loose idea how it would continue to worsen or improve. He said he hoped it would level out instead of going down, but there is no definite way to tell.

[Dachshundmum1]

Hi Meagain24.I have autsomal polycystic kidney disease. Stage 4. Genetic but not aware of any other family member with this. Have talked to consultant re. Transplant and dialysis so prepared when time comes. My GFR is around 20 at present.

Had DNA test to confirm type of disease. Son has had this also and luckily does not have the faulty gene.

My daughters haven't been tested yet but do have some kidney issues themselves.

I'm now 68 so by time transplant needed I may be too old.

Overnight dialysis administration at home sounds a good option. Bit more freedom. Will be speaking about options in near future.

Good team support.

I put a msg on this site a while ago now asking if anyone had had a subanachroid haemorrhage and asso ciated kidney problems but no-one replied 😟

Hope you all find your answers and stay well. Take care x. 😊

[Meagain24 in reply to Dachshundmum1]

Thanks so much for replying. Sorry to hear about your condition but sounds like you are doing a great job of planning ahead. Also great to hear your son doesn’t have it.

I think it can be difficult to get replies because some things are quite specific, and also there are lots of things posted on here and sometimes things get lost. I posted before and got nothing whereas this time I had a great response, so I would try again!

Hope all goes well with you & thanks again for your support!

[Dachshundmum1 in reply to Meagain24]

You are very kind Meagain.Thank you. Sending all good wishes your way. 😊

[Darlenia in reply to Dachshundmum1]

Simply jumped on here to let you know that as soon as your eGFR is 20 or lower, you can be approved for a transplant. For those that start this process early, some may get a pre-emptive transplant and skip dialysis completely. This would be a wonderful outcome for you. My hubby waited too long to start the process, wound up on dialysis, and then received a transplant at age 71.

[Meagain24 in reply to Darlenia]

Thanks for this - where are you from? I’m from the UK so not sure if that’s the same.

Glad your husband got a transplant!

[Darlenia in reply to Meagain24]

Oh! We're in the US. It may be similar in the UK...make sure you ask. It would be amazing if you could skip going on dialysis. You actually may get a transplant sooner in the UK than in the US. - the wait time is a bit shorter in the UK.

[Waterfrog123]

i have non-genetic fsgs. Was diagnosed at 21 years old in Stage 3a. I had hbp and proteinuria.

Was put on hbp medication. Now I’m egfr of 11 and will undo transplant in january. (15 years) since diagnosis). Not on dialysis yet, hopefully won’t need to before transplant.

[Meagain24 in reply to Waterfrog123]

Do you think the bp medication worked? Was that the only thing you took? Really hoping it works for me!

Are you in the UK at all? It’s taking a long time to get to the bottom of it all, get a final diagnosis and get some medication!

[Waterfrog123 in reply to Meagain24]

I’m in the US. Until stage 4, that’s all I took for meds. I exercised regularly, and ate a low sodium/low animal protein diet. (1500mg of sodium total)

The only other stuff I took at stage 3 was a multivitamin and D3. Stage 5, I’m on more meds now.

[MominFL]

My son was diagnosed at 16 with FSGS thought to be because of his African American ethnicity. However, we insisted on a biopsy. He ended up having idiopathic membraneous nephropathy. His GFR was in the 30s then. At 28 his GFR dropped to 15 ..then quickly to 5 when doctor told him to come off his immunosuppressant so he started dialysis. He’s on the transplant list and praying for a kidney. Not a fun journey but our faith in the Lord keeps us going. Best of health to you. As others said, your diet is key to staying away from dialysis.

[Meagain24 in reply to MominFL]

Really hope your son gets a kidney very soon.

Was he well between EGFR 30 & EGFR 15?

[MominFL in reply to Meagain24]

Thank you. Blessings to you on your journey as well. Yes. He took tacromilus and typically felt ok.

[WYOAnne NKF Ambassador]

I was diagnosed with FSGS in 1992 with a kidney biopsy. One of my kidneys was bigger than the other, & they biopsied the bigger, healthier one. Turned out, with some investigating that it was a STREP infection I had at age 9, with nephritis shortly after that caused my issues. I do not know what my EGFR was, because back in the '90's doctors were more concerned about your creatinine and BUN.

For me it progressed and by 1998 I was put on the transplant list and October 15, 1999 I had a transplant from a 16 year old deceased donor. This October will be my 25th year Kidney Anniversary. I am leading a great life, because my donor said YES! My creatinine today is stable at 0.9!

You have to realize that back in the 90's there was no talk about a kidney friendly diet. I was just told NO ADDED SALT. I wonder if I had known more about adjusting my diet if I could have stabilized my condition! I have no other health issues - not diabetic, no heart issues, etc.

I would suggest you go to the NKF website kidney.org Look at their suggestions for diet and even have some recipes. Learn all you can about your kidneys and things to expect.

[Meagain24]

has anyone had lots of headaches? Keeping getting them every couple of days.

[Bet117 NKF Ambassador]

I was given Tacrolimus for my Membraneous Nephropathy which did reduce the protein spilling. My close friend in the UK was given Rituximab for her FSGS, which, generally used for MN, wasn't greatly effective. She was violently allergic to prednisone which was the initial choice which did nothing but bloat and other side effects.

Her consultant put her on cyclosporine, which reduced protein and got her to remission. It was a process for both of us.

Keep positive and speak openly with your medical team.

In support.

Bet