Early Treatment Questions

• By mamagemini
• Posted October 20, 2009 at 9:44 am
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Honestly it seems from reading everyone's diagnoses we are are the same in 3 meds - BP med, cholesterol med and a diuretic. The rest is different...the immunosuppresants we are on are different. Mine was Prednisone in the beginning then Cellcept and Pred, then Cellcept and now nothing. Not for lack of getting better just that neither was doing much. The Cellcept did more than the Pred ever did. The Pred did NOTHING for me but break my body down further. Cellcept brought my protein spill from 17 to 8.9. It won't get better. I have gone from Stage 1-2-3 in 4 years.
Good luck and let us know if any med regime helps you out.
=-)

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• By klocka
• Posted October 20, 2009 at 5:59 pm
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mamagemini,
how long have you been off the immuno's.
i am going to neph on thursday and want him to stop all. been on cellcept, pred, and cyclo since dec of last year with no real change other than the cyclo actually decreased kidiney fuction. went from stage one to three in 2 months. really frustration.

lifedrills,
i wish i had a dr like your i was put on prednisone so fast i had no idea what i would turn into which was someone i didn't recognize inside or out.
good luck

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• By Alfonso123
• Posted October 20, 2009 at 7:11 pm
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Hi,

I was told I had MN in April of this year. Started out leaking 8.5g/day of protien. Was on 40mg of lisinopril and it dropped to 4.02g/day. (plus the usal cholesteral meds). At six months, protien levels went back up to 4.8g/day, so he put me on 80mg of lisinopril. In Dec we find out if that is doing anything. He isnt big on using immunosuppresants right of the bat either.
I dont know what to say.... everyone reacts so differently, it is very fustrating to have kidney issues. This is a good place to get information and hear others stories. Great place to vent.

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• By PatriceM
• Posted October 21, 2009 at 10:20 am
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I've been on pred. for almost months. Started at 80 mg, down to 60. I want off badly as I have not slept for 2 months and weight gain awful, etc.
Plus many other drugs to keep my bp down. I guess that's the drill. I'm 53 and first time to be diagnosed with the protein spill.
I have responded to the pred. as protein spill is less. Have considered just going off pred but apparently that's a bad idea.

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• By MooseMom
• Posted October 21, 2009 at 3:38 pm
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It will take some time to find the "best plan for remission". That's why you will probably be going for labs every three months or so; you and your doc will have the opportunity to see what meds at what dosages are effective for you. And those meds and dosages can be altered as time goes by.

I've had fsgs for almost 20 years, but it is only in the past five years that I have started seeing a specialist and followed an aggressive treatment plan. There are all kinds of issues to be addressed, mainly kidney function, high blood lipids and hypertension. I take cyclosporine plus three meds for high lipids and three meds for hypertension. I take several supplements...sodium bicarbonate for high potassium, Vitamin D, folic acid to protect me from high homocystein levels, fish oil to protect my cardiovascular system and allopurinol to protect me from gout. After several years of playing around with dosages, we've seem to have hit upon a treatment plan that is effective for me. My cholesterol is normal, my bp is well controlled, and my creatinine is stable at around 2.3. I am in stage 4 (and have been for these five years...I don't know at which stage I was before that), but I am doing well.

I was never given steroids.

I have never felt unwell; I am active and go about my daily life like anyone who does not have a chronic, incurable disease. The psychological toll has been much greater than the physical; fear is as debilitating as anything, and it is my mind that presents me with the greatest struggle.

This is a process. Keep your lab/doctor appointments, and from personal experience, I can say that it is a good idea to keep copies of all of your labs so that you can track your progress and note if a number seems wildly off. When I go see my doc, they already have a copy of my lab report waiting for me; I actually see them before my doctor does. This way, I can have a look and see where a problem might have cropped up; I can prepare my questions before the doc even opens the door.

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• By lifedrills101
• Posted October 21, 2009 at 10:01 pm
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WOW, i want to thank each of you for the information and encouragement. Hate to say it but the more I read about signs and symptoms, I am feeling like Kluzo searching the apartment for Kato. Initially I have to say that I was curious about not doing the Pred right off the bat but the more I am reading the better this decision sounds. All the responses thus far have made an impact and I appreciate the time and concern. I wish you all Peace and will add each to my prayer list

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