FSGS and Prednisone

A few years ago I found out I had FSGS. Around 2004 my protein was 3820 mg/L and my creatinine was at 1.6 mg/dl. I went on prednisone for three months and brought the protein down significantly. My neph had to take me off the prednisone because I couldnt take the side effects anymore. I gained over 20 pounds, had crazy mood swings and worst of all my knees hurt so much that some days I could hardly walk. My most recent bloodwork and 24hour urine shows the protein at 3160 mg/L and my creatinine at 2.25 mg/dl. I dont want to go on prednisone again : (. What drugs have you guys had to use for a similar situation and what are the side effects if any?

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I had a similar thing happen and had to go on 60 mg of prednisone for about 150 days + 125 mg of cyclosporine 2x daily, and now I am on 100mg cyclosporine 2x daily,40 mg. Zocor and 20mg. Benicar and 10mg Ambien and 1mg Bumex. While I was on the prednisone I had to take 50mg of Zoloft to help with the mood swings. The side effects of the cyclosporine are not even close to prednisone side effects. Hair growth, blurred vision are a couple of my side effects also my urine color is orange and it has a stronger smell. ( sorry about being so graphic). I also had the knee and joint pain with the prednisone the knee pain is still present but the other joint pain is not there or not as severe, the mood swings are not comparable. Your creatinine levels seem to be high.

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Well I turned out to be steroid resistant. No matter how much or how long my protein would not drop.
It didn't start dropping until I lowered the prednisone. I just recently stopped so I can't wait to see what my protein is now.
I have been on cellcept, lisinipril, lopressor, lasix, zantac, and lipitor. On my own I take antihistimine every night and started fish oil every other day.

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I just stopped the prednisone too. The bad side effects hit me within 2 days and I couldn't handle them either. I was evil and had a bad, daily headache the entire time I was on it and for 2 weeks after stopping. I will never take it again...period. Anywhooo, they are going to put me on Cellcept next, I think. I think it just has the normal side effects of most immunosuppressants.....diahrrea/ constipation, infection risk, cancer risks, etc. I will take those over the pred.

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My nep wanted me to take 60 mg of predinose when I became diagnoised. And I refused ( much to his dismay and shock)I am already 100 lbs overweight and and have had depression issues for years and have Lupus. I did my own research and and asked for the 2nd line of treatment which was immunospression drugs . I started out on 125 mg 2 x a day and now I am on cyclosprine 100 x 2 a day and 10 mg of predinose. And my protein is great now. I was on 3 blood pressure meds but then I became hypotensive and had to stop all 3 recently. I would say 99 % of the time I have do not have bubbles in my urine. What he did say was that the problem with the cyclosprine is that once you stop it the spytomns come back. I would rather live a shorter life in a better way then live longer and be miserable everyday.

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When first diagnosed with MGN I was put on 50 mg prednisone BID, 100 mg Cytoxin BID, 40 mg Lasix, 10 mg Lipitor, 5 mg Ramipril and the blood thinner coumadin. This was continued, with a gradual drop in prednsione, for three months with no sign of improvement. I was then switched over to 500 mg cellcept BID, 100 mg cyclosporine BID and within a month my protein spill had dropped 50%. Nearly eight years later I only take 25 mg cyclosporine BID, 10 mg Lipitor, and 15 mg Ramipril to remain stable with none to very little protein spillage ... not enough to caught by an Albumin stick. Prednisone I hated. Unfortunately, due to a recent unrelated surgery I had to get inflammation under control quickly and was put on prednisone for a week. That was three weeks ago and I am still dealing with the residual effects of the drug. I do not do well on prednisone. I would ask your neph why he has not suggested cyclosporine or another immunosuppressant instead of more prednisone. Good luck and keep us posted.

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I was in remission for almost a year and relapsed a few weeks ago. I see my neph on Thurs. I did the "fast track" last time and went into remission quickly on 60mg of pred for 2 weeks, then 40 for two weeks, then 20 and so on. Now he wants to do it by the "text book" and increase the pred dosage and length of time. I'm trying to gather as much info now before I see him Thurs. He wouldn't say on the phone the dosage he wants to try, but I can guess it will be much more than the 60mg and I am not willing to be a team player to that. Any insight would be greatly appreciated.

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skimonger22,
I was told the normal dosage was 1mg per kg of weight. I was given 60mg for almost 3 months and by the last month I couldnt take it anymore. The first two to three weeks were fine, after that it started getting really bad. I remember my family getting upset because I was on edge all the time. I'll see my neph next wednesday and see what he says now. I would not want to take any more than the normal ratio since it is bad enough as it is. Good Luck with your appointment!

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hang in there! it is sooo hard! i have 3 little boys and trying to find the patience & energy seems sometimes impossible.
i have been on 60mgs/day since march & am just now coming off them. luckily, i didn't gain the weight, my diet consists of no sugar, no salt & only 1/2 cup of carbs & barely any dairy per day. i cook for my family & just do my stuff on the side. it was hard at first, but i am down to 120lbs (normal was 135) & i was 150lbs at the hospital in march.
in regards to other treatments, i am waiting for my appeal with the state because my insurance company has denied treatment twice. my body is steroid resistant so we are going for rituximab (experimental drug).

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Hello everyone,

I couldn't take the prednisone either, side effects were horrible. I was readmitted into the hospital due to stomach pains, broke out into a terrible rash all over my face and back. My neph placed me on Cellcept. It seems to be working well for me.

Hang in there until we are all in REMISSION!

Jamey
Arlington, Texas

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I am almost 60 and found out in 2007 I had FSGS, was in acute renal failure and scheduled for dialysis. I now have 100% kidney function and only take 5 mg of prednisone every other day. I started out in the hospital with Prednisone in the IV and cellcept. Over a 7 month period the cellcept was cut back and phased out. The prednisone was also cut back to present dosage. I went through all kinds of bad side effects including hair loss, night sweats, unable to sleep, mood swings and so on but it has been worth it. My neph told me Jan 08 I was in full remission with 100% kidney funtion and all protein and creatin levels perfectly normal. I stay on my diet which restricts salt, potassium and phosphorus so there are a lot of things I can't eat. I also have joint pain but I try to ignore it. I ride a 1400 lb, 16.3 hands racking horse and that really gives me joint pain but I love it too much to give it up. I work every day, keep my husband's books and do all my housework. It was really hard at first but it is much easier now. Don't give up and keep fighting. This is something we can live with and hopefully there will be a cure in the near future.

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Hi All,
Last week I came across this helpful forum, then I found I have some to share; I’m an FSGS patient also.
My journey started end of 2005 when I was diagnosed with MCD, the nephrology decided to go with 60ml of EVIL prednisone for 9-10 month, and EVIL prednisone plus 20ml of Cyclophosphamide for 2 month. Now I can conclude (IT WAS THE WRONG TREATMENT) I have seen HELL: - in addtion to EVIL prednisone known side effects I became diabetic "insulin dependant", and gout, ironacly I was still leaking protein and my kidney functions were getting worse. Make the story short, a year later I decide to change my nephrology and a second biopsy NOW it’s FSGS.
The new nephrology was smart, up to date and above all knows how toxic most of this medication are. Here what he did
1) Gradually dropped the EVIL prednisone
2) Started on Avapro 300 ml a day, then gradually increase it to the maximum tolerable dosage, currently I’m on 450 ml a day,
3) Continued using Furosemide, Lipitor (more on this one other day - LOL) , Allopurinol, Calcium With vitamin D (Caltrate)
The next step was to try Mycophenolyate Mofetil (MMF), but things got better and I didn’t need to use it
Hey it’s a second year; I can see the light again
No more diabetes, better Creatinine, eGFR, Albumin readings
I’m still leaking protein, but with each blood work it’s getting less
If I have known what I know now, I would never experienced with EVIL prednisone, I’m not a doctor but there are lot’s of resources on the web that proves EVIL prednisone may provide no help to adults with FSGS or MCD
On another note: I also found it could be helpful to consult a certified naturopathic doctor in the area of Anti-Inflammatory and the benefit of Antioxidant, Milk thistle, Curcumin

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Good luck with the Rituximab. My son had Rituximab & responded well. My insurance co. also denied treatment. We appealed several times & they finally gave in.

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That's great that you responded so well to treatment. I pray everyday for all of you & for my son. Unfortunately, my son has failed all treatments. He also has FSGS. Treatments help in the beginning but his body builds a resistance to treatment. We have to stay positive.

Good luck. Ljillson

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Make sure that you take calcium supplements if you are on Prednisone because it can decrease your bone density. Ask you Dr. for a Dexa Scan for bone density.

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