FSGS

[HazelLynn]

Has anyone out there heard of or got, Focal Segemental Globular Slcerocis FSGS? its a kidney disease which my husband has recently found out that he has - does anyone have any advice regarding diet/medication - any information that will help him to feel better and to get better would be appreciated profusely.  He is currently undergoing one kind of treatment, but the doctor said it will take four months before it starts to work - it may not even work - so I am looking for alternatives.

Many thanks

[HazelLynn]

Hi Meredith,  

Thank you so much for your post and for the website - I will check it out.  I am so sorry that your son has this disease - he is so young.   I know that your heart must be breaking and that you would do anything to make him better.

My husband has carried on with the medication that the doctors gave him, but has also been having accupuncture for the past few weeks and has been taking alternative medicine and he seems at the moment to have improved quite a lot - it may be worth you speaking to your doctors about accupuncture for your son - it apparently kick starts the body to start fighting again - we are hopeful,

I wish you all well.
Hazel

[mereimo]

Our son was diagnosed with kidney disease quite suddenly at the age of 12 so we sympathize with your fears. He has a condition named FSGS which is a progressive form of kidney disease. I can't give you any answers because we are in the same boat you are---we think things are going well and then we find out they aren't---, but there is a website you might want to check out which I recently found which was very informative. It is   nephcure.org   I hope you and your husband make a full recovery and that this site will be helpful to you.

Best wishes
Meredith

[HazelLynn]

Hi, its a long time since I have been on this post and I wondered how you are doing? have you had any improvements? I hope so.
I am very interested to know if there is anything new that has helped you since we last posted, so that I can see if it would also help my husband, the more information we can all share on this disease the better it will help us cope.

Wishing you well
Hazel

[HazelLynn]

Hi thanks for all your information, I will print it off for my husband and get him to take it to the doctors tomorrow, and test it out to see if these medications could be of future use.  My husband has been a lot better recently and its great to see him like this, but now he has started with a cold and thats knocking him a bit for six. You said in your post you could say a lot more about the condition, we would appreciate anymore that you can tell us, its been an absolute nightmare for us as I was struck with breast cancer at the same time he got bad with FSGS and with 4 young children, you can imagine how frantic we have been.

The cramps seem to have stopped for now, he started wearing thermal gloves when they got bad and that seemed to help.

He had developed diabitis for awhile, but that has now disappeared.  

Then he got anaemia and now thats under control.  His bp is spot on, his cholesterol is still high, but not as bad as it was.

It seems that he just gets rid of one awful symtom and then another takes its place.

I just reread your post and it hit me that you are so young, thats terrible, I really hope the doctors can sort you out and you can live without this problem, you were very young to start with. My husband is 54, he was a very very fit man and has no idea how this all came about.

What do your doctors think about it all, have they given you hope for a full recovery at some stage?  we asked his doctor about a kidney transplant, but they said that it wouldnt be possible as his kidneys would contaminate the new ones.  Please keep in touch and let us know your situation in more detail, its very hard finding people in the same boat.

Take care and thanks
Hazel

[TryingToBeWell]

I was diagnosed with FSGS 11 years ago (I was 22).
At my first 24 hour protien test, I only had 500 ml of urine output, but there were 11000 mg of protien.

I was terrified at first diagnosis, because the literature I read said that transplant is highly likely within 5-7 years.
I have had great nephrologists, and have managed flare-ups with medication and no further kidney impairments.

The first course of treatment for me was steroid (prednisone), diuretic (lasix), and blood pressure medication.
The cramping your husband is experiencing is most likely due to the diuretic. I had horrible cramping in my hands, feet, and legs.
After a few months, the steriods stopped working efficiently to lower my protien. At that time, my doctor started me on oral Cytoxan (a chemotherapy drug). This worked effectively to lower my protien levels. After about 8 months, I was back to normal, except I had put on 50 pounds of weight from bad eating and the steriods.

I stayed on the blood pressure medication (Altace/ramipril) and have also started taking cholesterol medication (lipitor).

I have had two relapses since then where my protien levels have spiked back up. Both relapses were treated with Cyclosporine (the transplant drug mentioned by popsycle). I took a 2 year course of this medication each time.
Of all the medications I've taken, I actually found Cyclosporine to be the MOST favorable. On paper the side effects are scary, and there are some uncomfortable things (like tingling hands and feet), but overall, I wasn't nearly as nauseated and fatigued as I was on steriods and Cytoxan.

I know you mentioned in another post that the doctors said diet won't really help, and that's probably true when it comes to treating the disease. However, after my experience of putting on the excess weight (and not being able to get it off), I would highly recommend watching your diet. Decreased sodium, high quality protiens (fish, chicken, beans), and lots of fiber will all help your husband feel as best he can. There's no reason to exacerbate the symptoms by eating unhealthily.

There is so much more I could say about this. It has gone from being one of the most scary experiences I've had in my life to being just this strange kidney disease I live with.

Most importantly, I would recommend you persisting with the doctor to get the nephrotic syndrome (protien spillage) under control. Your husband will not start feeling better until that improves.

[HazelLynn]

Hi, forgot to tell you that my husband is on Ramipril, lasix, prednisone, magnisium for cramp, pantoprazo to protect his stomach, Omnic for prostrate, calcium and Inegy for high cholesterol - are you on similar??????? also do you get bad cramps throughout your body, ????????  all his muscles have deterriorated on his arms and legs, urine is very frothy.   Are these symptoms the same as you are experiencing??

best wishes,
Hazel

[HazelLynn]

Hi,  Thanks for your post and for the information.  Have you been on medication since two years ago?  Does the kidney transplant drug mean that you will have to have a transplant?  Its all very scary, we are in a panic as I have just been diagnosed with Breast cancer and we have four young children, so are trying to research everything to see if we can get better.  You seem to be ahead of us - what do the doctors say?  my husbands doctors said he was the first case they have come across over here (Portugal), so I guess he is of interest to them.  Since his medication his protein came down 50 percent in a short time,his blood pressure is a lot better, not sure on his cholesterol, the whole thing though has messed him up.  You are so young to have this,
I hope you show signs of improvement.  Best wishes to you and thanks.

[popsycle]

I was diagnosed with FSGS almost two years ago.  I have been on high blood pressure pills but they are not working well enough so they raised the dose.  I also have very high cholesteral from the FSGS (I'm only 27 years old).  So now I'm on lipator also. If I don't show an improvement in two months they will put me on a kidney transplant drug or prednisone, they are sappose to be very effective but have bad side effects.   Make sure he does his urine labs in the morning this can make a large difference.  I've read lots on it and the nephcure.com web site has good info.  I hope this helps, good luck to you!