Back on Prednisone.

[jose001]

Hi everyone.
I was diagnosed with Stage 2/Stage 3 Focal Segmental/Glomerolosclersis in 2006.First treatment was 60mg Prednisone and Lisinopril. Then he added cyclosporine due to my protein was not going down. While on these meds it was horrible. Toward the end of 2010 my protein levels went from 1800 to 600 so he tapered me down and removed Prednisone and Cycolsporine. The only med that I was on was Lisinopril only. Toward the end of 2011 my blood work shows that I’m at stage 3 close to stage 4 and I developed bad couch due to the lisinopril so he replace it with Losartan and Pentoxifylline. Now went in for my every 4 to 5 month checkup and my labs are showing that my protein is back up to 1200 and still at Stage 3/4. So Dr. tells me that I need to go back on the Prednisone which I was not happy due to all the side effects I went thru the last time. So I’m on my 37 day on prednisone 60mg and I feel horrible difficulty falling asleep or staying asleep, shortness of breath, heartburn, unusual tiredness or weakness, depression, upset stomach and the list goes on. So my question to everyone is why go thru all this to eventually end up on dialysis/find kidney? Why continue treatment with these bad meds if the kidneys cannot heal or get better?
Any word/experience welcome.
Jose

[IHaveFaith]

Hello Jose,

Before I address your last question, let's start more at the beginning. Tell us about your BP and if it is currently under control. Take a deep breath, I understand EXACTLY how bad you can feel while on these types of medications but you have given all the meds you are/were on and your primary diagnosis but there's a bunch missing in the middle. BP problems are not going to help with the protein spillage and your diet should have restrictions, tell us about the diet prescribed, does it help lower the spillage any?

Hi everyone.
I was diagnosed with Stage 2/Stage 3 Focal Segmental/Glomerolosclersis in 2006.First treatment was 60mg Prednisone and Lisinopril. Then he added cyclosporine due to my protein was not going down. While on these meds it was horrible. Toward the end of 2010 my protein levels went from 1800 to 600 so he tapered me down and removed Prednisone and Cycolsporine. The only med that I was on was Lisinopril only. Toward the end of 2011 my blood work shows that I’m at stage 3 close to stage 4 and I developed bad couch due to the lisinopril so he replace it with Losartan and Pentoxifylline. Now went in for my every 4 to 5 month checkup and my labs are showing that my protein is back up to 1200 and still at Stage 3/4. So Dr. tells me that I need to go back on the Prednisone which I was not happy due to all the side effects I went thru the last time. So I’m on my 37 day on prednisone 60mg and I feel horrible difficulty falling asleep or staying asleep, shortness of breath, heartburn, unusual tiredness or weakness, depression, upset stomach and the list goes on. So my question to everyone is why go thru all this to eventually end up on dialysis/find kidney? Why continue treatment with these bad meds if the kidneys cannot heal or get better?
Any word/experience welcome.
Jose

[Misela]

Hi Jose,
I understand your frustrations with med.s and their side effects. I did the same protocol and drugs, except I went to Coxaar then I coughed from lisinopril. My doc said it is more protective of your kidney. The point of the drugs is to keep your native kidney for as long as possible. If you get a transplant, there will be more meds with side effects. Also, there is progress being made in the understanding of FSGS and you could benefit from more options for stopping the disease or making a tx last and not have the disease reoccur.

Have you discussed options for dealing with side effects with your neph or PCP? They should absolutely be able to help with stomach issues. I took 120 mg prednisone EVERY OTHER day... doc said it helps with side effects. ASK, don't make a change yourself.

Find out what you can about new treatments for FSGS. Check out the NIH research and a test by a Dr. Virginia Savin in Milwaukee for a circulating protein she believes triggers FSGS. There is a promising study that uses galactose to lower protein spillage.
I hope you find some relieve knowing others are or have been in your situation.
Take care and keep in touch,
Missie

[jose001]

Hi Everyone,

IHaveFaith and Misela thank you for replying back to my post you guys are awesome!!!
Will here are my last two 3 months apart blood work numbers.
Creat: 1.7 --- Bp: 109/61 p71 --- PRO 30mg/dl --- cre 100mg/dl --- p:c 300mg/g
Creat: 1.9 --- Bp: 135/77 p76 --- PRO 100mg/dl --- cre 200mg/dl --- p:c150mg/g
Two Biopsy left and right show allot of Scar tissue damage.

Misela, yes I would love to keep my kidneys put according to the Doctor all my problems started when I got sick with some kind of virus which stayed in my kidneys. We don’t know from where or how to treat them or how I got it and that the only way my body will stop attacking them will be by taking meds or removing them. When doctor told me last year 2010 that I was doing well and that he was going to remove the Prednisone and Cyclosporine and leave me with just Lisinopril I was happy that I was getting my life back. BUT now I feel that all I went thru those years on those meds was kind for nothing because I’m somewhat back where I started. I just feel like it’s a cycle that will not go away plus I would hate to leave any kind surgery when I’m older and recovering is harder due to I’m older. Also I got tested for bone density which came up with early stage of Osteoporosis due to the meds. So I feel like crap on these meds and nothing is getting better just worse.

[IHaveFaith]

Jose,

I will be replying to this thread but it's going to take me some time as I am in the middle of something else right now, however, I believe I can share some info that may help you. Give me a day, I should be able to respond by then. Thanks.

[IHaveFaith]

Jose,

First, I have to address the disclaimers so we can move ahead. I am a person with long-term chronic kidney disease, resulting from an autoimmune disorder of unknown origin/cause, also thought initially to be viral in nature, but all tests were ultimately inconclusive. I was never given an exact diagnosis, only treatments that brought me out of total renal failure (and near death from many other autoimmune complications involving almost every other organ I had, including my skin) and eventually into remission. I am not a doctor but I have been treated by dozens and dozens of them over the past 3 decades. Those are my ONLY qualifications. I am NOT qualified to give any medical advice so anything I say that you may find interesting or possibly helpful, consult with your healthcare team about it first!

You have indicated that your illness is idiopathic in nature as well, that your doctor is not sure how to treat you. You didn't answer me outright but I will assume that all the BP meds were dispensed to protect your kidneys and not because of uncontrolled blood pressure, unless you advise otherwise.

I find your last 2 labs interesting as the protein/creatinine numbers flip. Do you know why this is, or did your doctor mention it to you? Are all your other labs within normal range? RBC, CBC, WBC, any of those tests that you had taken indicate that you are currently having an immune response at this time or not?

My protein generally reads in the mid 60's mg/dl, creatinine in the mid 50's mg/dl and a protein/creatinine ratio of around 1250+ mg/24hr (thats1.2G/24hr!), whereas your read was 300 mg/24hr. I am in remission and I stay pretty stable but it takes work to stay there and not all of it is medication; you need to make sure you are eating correctly in order help stabilize your numbers (if possible) so that you may not have to take as many/any medications.

If you have prior labs, see if the protein and creatinine numbers flip. Some of your creatine may be controllable as well as your protein but your doctor needs to know how to guide you on this. Look over your other labwork, see if there is anything there that indicates something is going on.

The point is, some of us can stay in remission even though our numbers look daunting, sometimes this can be accomplished with fewer medications but you have to know if your kidneys will stabilize first, which brings us back to seeing if you can affect your lab numbers for the better through hydration, proper diet and other options that your healthcare team should be providing you with as an option.

Prednisone is not without side effects as are many other medications but back in the days when being a patient was entirely different than today, the goal was to discontinue or replace all medications that had long-term side effects or possibly created other medical conditions through long-term use as soon as lab results indicated the patient was stable and in remission, if possible, and then through diet modification, which includes your healthcare team providing you with the tools necessary to accomplish this at home, teach you how to better control your numbers, find out what your "normal" numbers are with the present amount of damage your kidneys have based on your 2 biopsy results and subsequent follow up labs. If you have had an extensive set of labs run recently, then you will have everything you need to get started with the questions you can pose to your doctor. My doctors never kept me on the cancer medications or the immune suppressant medications any longer than necessary, and despite what my numbers look like, since there is no other supporting evidence to suggest that my immune system needs suppression, those medications are not warranted. Perhaps this is, or could be the case for you. Also, I do not know if you are diabetic or not, but you should discuss the long-term use of Prednisone as it can lead to diabetes in some patients or can adversely affect some diabetic patients.

Visit with your doctor about supplements as well, which ones are okay and which ones should be avoided. Make sure that you take your medications as instructed and be sure if you take multiple medications at the same time, that they do not interfere with one another. Some medications should not be taken at the same time with supplements or each other, so you should discuss everything you are taking with your doctor as they may not even think to mention it unless you ask!

Consume HBV proteins whenever possible since you should be restricting protein in your diet already, you want to make the most of those you consume and know that all proteins are not equal! Learn to love your fruits and veggies and which ones are best for you. It is okay to splurge on special occasions, otherwise you could never stick to such a strict diet, but believe it or not, I much prefer it now over all the junk and preservatives that they are packing into all those processed foods! Yuck, even!!!

[jose001]

Hi IHaveFaith,

My overall heath is good I’m not diabetic and my blood pressure is good. The only thing is my kidneys.
I was able to find more of my past labs sorry for not having them all but will continue looking for them.
02/05/2008 – W/EGFR Glucose 95 --- Creatinine 1.03
03/10/2008 – W/EGFR Glucose 91 --- Creatinine 1.19 --- Protein 24 HR 15400
04/24/2008 – W/EGFR Glucose 115 --- Creatinine 1.09
06/02/2008 – W/EGFR Glucose 80 --- Creatinine 1.38
05/16/2010 – W/EGFR Glucose 92 --- Creatinine 1.38 --- Protein 24 HR 875
One thing that I hate the most from the Prednisone is the change in mood/depression…
On your last post you mentioned Hydration, are you talking about drinking water?
Also do you have any good websites I can look for proper diets/HBV proteins/supplements?
Again thank you for all your comments. It’s good to talk to someone that actually on the inside not on the outside… I hope that makes sense to you.

Thank you,
Jose

[IHaveFaith]

Jose,

I was thinking that I was missing something, can you confirm the second set of results you provided? 100 mg/dl protein, 200 mg/dl creatinine, protein/creatinine 150 mg/24hr..... if the protein and creatinine are correct, your p/c should calculate out to 500 mg/24hr and not 150 mg/24hr??

Also, I reread your original post, which stated your protein is back up in the 1200's... So, there is another set of lab results, more recent than those two you supplied?

[QUOTE=jose001;40402 Snip to lab results section of post.

Will here are my last two 3 months apart blood work numbers.
Creat: 1.7 --- Bp: 109/61 p71 --- PRO 30mg/dl --- cre 100mg/dl --- p:c 300mg/g
Creat: 1.9 --- Bp: 135/77 p76 --- PRO 100mg/dl --- cre 200mg/dl --- p:c150mg/g
Two Biopsy left and right show allot of Scar tissue damage.

[/QUOTE]

[jose001]

Hi IHaveFaith,

I took other look at the lab sheets and there are two tests one is called I-STAT Chem8+ and MultiStix Pee in cup test. lol

9/7/11 I-Stat Chem8+ - GLU 99mg BUN 19mg Crea 2.0 mg/dl
9/12/11 I-Stat Chem8+ - GLU 102mg BUN 22mg Crea 1.6 mg/dl ------ MultiStix test – Pro 100mg/dl CRE 200mg/dl P:C >500mg/g
2/17/12 I-Stat Chem8+ - GLU 94mg BUN 25mg Crea 1.9 mg/dl ------ MultiStix test – Pro 30mg/dl CRE 100mg/dl P:C 300mg/g
2/23/12 I-Stat Chem8+ - GLU 93mg BUN 20mg Crea 1.7 mg/dl ------ MultiStix test – Pro 100mg/dl CRE 200mg/dl P:C >150mg/g
6/28/12 I-Stat Chem8+ - GLU 99mg BUN 20g Crea 1.4 mg/dl ------ MultiStix test – Pro 300mg/dl CRE 50mg/dl P:C >500mg/g

Thank you,
Jose

[IHaveFaith]

Hi Jose,

Okay, I think we need to back up here for just a minute and regroup. You are seeing a nephrologist for your kidney condition, are you not? After your biopsies and your diagnosis in 2006, did you not receive diet instructions from your doctor or a renal dietitian outlining your dietary restrictions, beneficial supplements, fluid requirements.... or have you ever received diet instructions since your diagnosis in 2006, or as your condition changes?

For the time being, you should definitely keep gathering up your labs and other medical records and start a file so you will be able to monitor your condition but it seems where you could spend your time best right now is preparing for your next visit with your doctor so you can ask the proper questions to see if you can stabilize or slow those numbers but you need to know if you have been placed back on prednisone because you are no longer in remission or have you been placed back on prednisone only to try and preserve your function and to see if the numbers can be improved?

That is why I asked you if any of your other labs suggest that you may be experiencing an immune response at this time? And if your doctor has guided you and tried to help you improve or control your numbers through treatment modalities that include more than just treating with prescription medications? Are all the lab results you mention done with some type of meter in office or do you go to the laboratory to have your blood draws?

Add to original post

Jose,

Your doctor should also be running other batteries of tests to help determine if your condition is worsening because of your original illness (immune disorder) in 2006, which resulted in your FSGS, and those other tests are a reliable method to help your doctor determine this. You should have received basic dietary instructions such as limiting your salt and protein intake.

A typical lab trip for me as a person with an autoimmune disorder and CKD yields approximately 4 pages of test results. I also provide a UA while there and drop off a 24 Hour Creatinine Clearance, to be included with the results.

[jose001]

Hi IHaveFaith,

Yes I’m seeing Nephrologist. Yesterday I had Nep Dr. Appointment to see how I'm doing with the prednisone and to get my 24 hour Protein reads.

Last visit Lab results: 6/27/12
I-STAT CHEM8+ = Glu 99mg/dl BUN 20mg/dl Crea 1.4 mg/dl
Multistix = PRO 300 mg/dl CRE 50mg/dl P:C >500mg/g
24 Hour Creatinine = Creatinine 24 hour urine 1.86 -- Protein/Creatinine Ratio 2267 Protein Total 24HR UR 4216

Yesterday Visit Lab results:
I-STAT CHEM8+ = Glu 137mg/dl BUN 21mg/dl Crea 1.5 mg/dl
Multistix = PRO 100 mg/dl CRE 50mg/dl P:C >500mg/g
24 Hour Creatinine = Creatinine 24 hour urine 1.71 -- Protein/Creatinine Ratio 1925 -- Protein Total 24HR UR 3290

Dr. is taking me off the prednisone because the side effects are too much so he started me on a taper schedule. He said that my kidneys are stable so far but my protein is high. So for now he has me on Losartan 20mg once a day and Pentoxifylline 400mg three times a day. Once I’m completely off the prednisone and I’m back to normal he what’s to do labs and 24 hour creatinine to see where I’m at.
He also told me about a new drug called H.P. Acthar GEL has anyone heard anything about this drug?
He said that I’m a good candidate and that he would like to see if this might help me. So what do you guys think?
I wish we knew what started all this but the first time I was in the hospital they ran batteries of test because they didn’t know why I was so sick, every test they ran came back ok.
After they kind narrow it down to my kidneys they ran other batteries of test to see if there was something they miss but no luck every test they ran came back ok.
The only test that shows something was my two kidney Biopsy results Scar tissue damage.
He’s calling it Idiopathic illness.

Thank you all for your help and words.
Jose

[IHaveFaith]

Hello Jose,

Wow, your protein numbers have improved and your doctor seems to be very willing to help you, which is super great! I have some questions for you about your last lab.

Your glucose has always been within normal ranges until this last reading, yes?? Did you have the test taken at a different time of day, or after a meal, anything that you might have done different that you can remember when you had blood drawn, other than the medications your doctor placed you on that might have contributed to the change between the last two tests?

Your total urine output is pretty high this last read (3290), but lower than the test before on 06/12 which was (4216) and 5/10 it was (875) and if my eyes do not deceive me and it was not a typo, 03/08 it was (15400!!) What does your doctor tell you about this, are you drinking that much fluid to stay hydrated or is your intake of fluids as much/more/less as your output? I'm just kidding you about the 03/08 numbers, I have had some pretty high volume myself so it would not surprise me if it were this high, but I am curious if your doctors are addressing this and trying to bring the condition under control without destabilizing you, I don't know if the added volume is entirely related to the prednisone, extra fluid retention from the meds, or has your doctor looked for other underlying reasons?

[jose001]

Hey IHaveFaith,

I think you are right on when I had the blood draw. On 6/27/12 is was around 9:30 empty stomach and 8/9/12 is was at 12:00pm I did eat something before they draw the blood so that could be why my glu was higher.
I did go down on the protein. But he still what’s for it to go down more. The Dr. is more concern about my protein levels now. That’s why he was taking about that new Drug called HP Acthar Gel (repository corticotropin injection) he said that might be the drug to help me with my protein.

I do know that when he put me back on the prednisone that’s when everything went south. So I’m hoping that as I get off it I should lose some of this fluid retention and the side effects stop.

What’s your thought on the HP Acthar Gel?

Thank you,
Jose

[IHaveFaith]

Hello there, Jose

Okay, I need more time to look over this option you and your doctor are considering (is your doctor concerned about nephrotic syndrome?) and I went to their site and will go back but what I was most interested in early on that I have been trying to get back to is your diet, which you asked about when this thread was just getting started.

Look at this page from the site (link below), as while you are considering the new treatment as an option, you will be tapering off the prednisone and now is the time for your doctor to really help you get on a renal diet that can also help A LOT, with your numbers and maybe postpone the necessity for additional medications and/or possibly help you reduce some of your other medications, especially since he is now trying to determine what your "normal" is and will be running other tests to monitor you, the diet could really be a good option to implement between now and then and you have time to see if your results can improve through diet modification while you are coming off the prednisone and learning more about this option your doctor is considering.

http://www.acthar.com/nspatient/nephrotic-syndrome-diet

Still, let's not minimize that reduction in protein there! Improvement is always a good thing, so congratulations on that!

Hey IHaveFaith,

I think you are right on when I had the blood draw. On 6/27/12 is was around 9:30 empty stomach and 8/9/12 is was at 12:00pm I did eat something before they draw the blood so that could be why my glu was higher.
I did go down on the protein. But he still what’s for it to go down more. The Dr. is more concern about my protein levels now. That’s why he was taking about that new Drug called HP Acthar Gel (repository corticotropin injection) he said that might be the drug to help me with my protein.

I do know that when he put me back on the prednisone that’s when everything went south. So I’m hoping that as I get off it I should lose some of this fluid retention and the side effects stop.

What’s your thought on the HP Acthar Gel?

Thank you,
Jose

[IHaveFaith]

Missie,

You got lost in the shuffle, LOL! Tell us more about what you have learned about this circulating protein, can you provide a link so others might have easy access to the information you speak of, it would be most helpful!

We can never have too much bedtime reading, now can we!

Thanks, Missie and if you feel up to it, your participation on this thread would probably be most appreciated as Jose seems to have a really nice doctor who seems to be very active in helping him, which is going to be so beneficial for Jose as they seem to be working well as a team, just as it should be.

Hi Jose,
I understand your frustrations with med.s and their side effects. I did the same protocol and drugs, except I went to Coxaar then I coughed from lisinopril. My doc said it is more protective of your kidney. The point of the drugs is to keep your native kidney for as long as possible. If you get a transplant, there will be more meds with side effects. Also, there is progress being made in the understanding of FSGS and you could benefit from more options for stopping the disease or making a tx last and not have the disease reoccur.

Have you discussed options for dealing with side effects with your neph or PCP? They should absolutely be able to help with stomach issues. I took 120 mg prednisone EVERY OTHER day... doc said it helps with side effects. ASK, don't make a change yourself.

Find out what you can about new treatments for FSGS. Check out the NIH research and a test by a Dr. Virginia Savin in Milwaukee for a circulating protein she believes triggers FSGS. There is a promising study that uses galactose to lower protein spillage.
I hope you find some relieve knowing others are or have been in your situation.
Take care and keep in touch,
Missie