I NEED YOUR HELP!!

• By Aweson-son
• Posted September 3, 2008 at 12:47 am

Okay, well where to start. First, yes I threw up all the time, and still do. Steroids suck, but if they work and go into remission and you don't relapse, they will be worth it. Also, everyone has a different experience with them. Stomach acid, another yes for me, and the steroids are hard on your stomach. Take some prilosec OTC. That is what my doctor told me to take.
The swelling will go down when your protein goes down in your urine. This will happen when you start to go into remission, some people never do fully. Is he taking lasix for the swelling? I know my swelling normally starts to make my ankles ache. Also, about being depressed, I had that too.
I take just a small amount of Zoloft to help with that.
The other thing that helps me, is that I know I could have it worse and there are others out there dying. I have a friend who's sister is 27, she had cancer once a few years ago and got rid of it. Now it is back in her entire body and they cannot get rid of it. She has been given 5 years to live. So, I always think of her. Not to be a damper, but try to stay positive.
I currently work, but am applying for disability because I seem to be extreme and can't seem to stay healthy.
Always Ask lots of questions. I know someone has said... you pay them. Make sure you know why you are taking the meds you are. Ask what it will do, and how they work, what symptom they are for and so on. If you don't know ask ask ask! I call and get certain results from my blood work and keep track of things on my own.
Hope that wasn't too long, and didn't scare you. I have been diagnosed with FSGS for almost two years now. There are ups and downs, good days and bad.

Allison

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• By maaxiim
• Posted September 3, 2008 at 8:31 am

Hi there, Your brother in law is lucky to have someone like you that is prepared to reach out and ask for help for him, thanks to you for doing that.
I am not currently taking steroids as I have been in ESRD (End Stage Renal Disease) for many years now, but had previously been taking steroids in combination with other medications for over a decade. As a result, my stomach is in pretty bad shape. I had gone through most of the regular stomach pills, and none really gave me any proper relief. That was until my doctor prescribed Nexium. Wow, can you say wonder drug? The only time I experience stomach problems now is if I mess up my medication schedule. If I could offer some advice, it would be to closely monitor and control diet. Over the years, I've felt best when my wife and I stick to a suitable diet, with exercise. Asking questions and educating yourself is also a useful weapon in the arsenal. I wish your brother in law good luck.

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• By amelieMA
• Posted September 3, 2008 at 10:05 am

Hi!
my husband Steven was diagnosed with MCD exactly one year ago. This is what his nephrologist has prescribed. I am not giving you the names of the drugs as we are in Canada and I am not sure where your brother in law is. Please note that for most side effects of prednisone the family doctor keeps tabs and re-adjusts in conjuction with the nephrologist:
Steven started on prednisone 80mg daily (now at 5mg every otherday):
2 types of diuretics for the edema (water retention)
2 types of blood pressure pills
Vit. D
Calcium
Meds for stomach acid etc.to coat the stomach

I think that's it. Now that he takes a lot less predn. He still takes the other meds. He also is now on cyclosporine as well.

A big help with the fluid in the feet is to get properly fitted "suppression stockings". We were not told about these until recently but they have helped with the bad swelling of the feet.

Steven is still easily tired and needs extra rest. Every one is different and nobody can predict how long it all takes. We go to the nephr. and family doctors with lists of questions and try to read as much as possible to inform ourselves. Look at sites on the internet that can be trusted like the Mayo Clinic and the National Kidney foundation. Talking to others on this site also helps a great deal as one does not feel so alone and isolated.
Friends and family have never heard of this disease and want to know what is going on.
NO SAlT!
EAT HOME COOKED MEALS, NO CANNED FOOD, NO FAST FOODS.
I hope this helps,
Amelie

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• By Beth75
• Posted September 3, 2008 at 12:14 pm

Clio,

You have found the best place for info......of which there is not a lot, but look through all the posts and there are links to some great websites, which help explain MCD. Seeing a picture of it, really helped me grasp it. I love my Neph, he actually drew me a picture, but there are some online.

It is very hard to accept you have a kidney disease and on top of being on that much pred, I cried for the first month on 60mg of pred it was sooo difficult. There is a book called, Coping with Prednisone, you can order it from Amazon it was about $13 and worth every penny! Pred really screws with your emotions. Plus you feel so alone at first and do not understand all those feelings you get.

I take prilosec for my stomach problems its OTC and it really helps.

I only went into partial remission on the steriods, I will probably be going on cellcept next.

I currently take
5mg of Pred (down from 60mg a year ago)
160mg diovan 2xday
300mg tekturna 1xday
20mg fursomide 1xday
20mg simvastatin 1xday
Fosomax 70mg 1xweek (very important to prevent bone loss caused by prednisone)
Calcium and Vit D 400mg 3xday (very important to prevent bone loss cause by pred).

I also take 200mg of imuran 1xday for my UC it should help my MCD but it does not.

Also compression stockings have been great for me. The pred made me swell more.

Best of luck! Keep on pushing and looking for answers and have your brother in-law be his own advocate, sometimes it takes a few Dr.'s before you find the right one. It's our job to question everything.

Also, I bring a notebook to each appt, write my questions beforehand, ask for a copy of your lab report at each visit, the receptionist can make you a copy. Keep a med list and again do not be afraid to ask your Dr. questions, it is their job to do that, though sometimes hard when we don't know the questions to ask.

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• By kstreza
• Posted September 3, 2008 at 7:15 pm

I was diagnosed with Minimal Change in February 2008. The first few weeks were scary, no doubt about that. My doctors weren't very clear and I spent a lot of time trying to figure out what was wrong, and what was part of the disease.

My doctor told me the nausea, hiccups and stomach acid were all in reaction to the high doses of Prednisone, and prescribed Protonix, which helped immensely.

Because he'll be on a high dose of Prednisone for at least 2 weeks (I was at 60 for 2 months, even though I showed no protein after 6 weeks) he'll have to taper down off the drug, which is hard, but do-able.

As for the depression and the getting back to normal life, I think it depends on your brother-in-law. I was too weak and dizzy to get back to work, but I really needed friends and family to visit, call, and email. Once it hit me that this could be a long term struggle, I retreated into myself and was very depressed. Six months ago I couldn't have imagined being weak for 6 whole months, but now I'm reveling in having energy and experiencing progress.

Beth is right about having a list of questions to take to the doctor. I saw my nephrologist only once every month or two, but my primary care doctor every week or two weeks in the beginning, just so I could ask her all the questions I or my family had.

My doctor also recommended massive amounts of Fish Oil (12 geltabs per day) which seemed to help with the swelling. If he can, encourage him to get up and move around every hour to reduce the chance of Blood clots and to keep his muscles working.

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• By mamagemini
• Posted September 4, 2008 at 2:58 pm

Well for me the evil prednisone didn't do anything! My protein never went down, my skin was horrible with bruises and thinness, my eyes went bonky, my stomach went into full GERD (now take 300 mg of zantac for over 2 years now), the swelling did not go down for over a year!! So needless to say I am resistant to it. So they tapered me off after 2 years and down to 5 mgs every other day for a year and now they have taken me off! Woot woot!! I have Cellcept which alone took me from 17 down to (after a year or so) 7!! So I am a firm believer in NO high doses of prednisone!!
Yes it messes with all of your body!! It may make him angry so get ready.
I am also on:

Lisinipril
Lasix
Diovan (just started 1 week ago)
Cellcept
Zantac
Lipitor

An antihistimine because of the lisinipril
Vit E to keep me healing (every other day)

I may start some vit B's here too for the cholesterol help.

Tell him to watch the salt!! Salt is a kidney killer along with ibuprophen.

Good to hear about the fish oil...if he can have him drink cranberry juice at least 8 oz a day and lemon with his water. All natural diaretics. Can he tolerate caffeine?

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• By NancyG
• Posted September 9, 2008 at 11:32 pm

clio- tell your brother-in-law to really limit all salty foods till his urine protein goes down, elevate his legs when possible, and weigh himself every day to keep track of water weight gain. It's a good idea to keep a notebook or a calender with med.dose, wt., protein dipstick results, etc. recorded for Dr. appts. or future relapses.

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• By cks689
• Posted September 12, 2008 at 1:27 am

Hello, I just want to share this with you all. I had a kidney transplant last October, 2007. Now, I am taking Neoral, Cellcept, Metropolol and 2 mgs. Methylprednisolone. I was also on Protonix for awhile then Omeprazole. I have read that acid reducers are not advisable to take long term as it can cause some damage to one's esophagus and etc.. I did not take it regularly, only when I feel that I need it. The last few weeks , I noticed that I had been having sleep problems. I did not feel any pain or discomfort in my stomach, only that it seems something was building up in my head which scared me and I just could not fall asleep. I would lay awake until 3 or 4AM. Once in awhile I would take Ambien, then last Tuesday night same thing happened and I was awake again till 3:00 I called my manager's number at work and left a message at 3:20AM that I won't be going to work that day and I took another Ambien as I wanted desperately to get some sleep. When I woke up, I called up my transplant coordinator who told me that she will have one of the kidney doctors call me back. He did not have any answer for me and just told me to come to see them. I decided to make some research and logged on to this website where people share their experiences on natural remedies. I decided to search for GERD in the same website and concluded that I might be experiencing some acid reflux and that prescription drugs can cause it because they are acid forming just like acid forming foods. The remedies that were used and worked for these people were papaya and pineapple enzymes which one can also get from just eating the fresh fruits, fresh ginger root or ginger tea, olives, , fiber supplements before eating, pickles and pickle juice, raw honey, spring water, no coffee, alcohol, or soda; good quality yogurt, lemonade with meals, mangosteen juice, yellow mustard, no late night or after 8PM eating; cayenne pepper, wheat free and low fat diet, avoid processed foods, apple cider vinegar.
I was very desperate, so I decided to drink a glass of water with one tablespoon of organic apple cider vinegar that I happen to have in the ref after meals. I also had another half glass of water with the vinegar before going to bed. I could not believe it but I had a really good night's sleep and I woke up feeling refreshed and that thing in my head was gone. I was very happy my ordeal was over. From now on I will always have some lemon juice or apple cider vinegar in my food or drink and I can easily incorporate pickles and yellow mustard and cayenne once in awhile and eat papaya or pineapple when available.
Sea salt should be better than mined salt as it is easily excreted in the urine if I remember it right and it is also contains minerals and also useful for urinary tract infection. This is just what I would like to share and my best wishes to everyone and I pray that we will have all the strength and the positive attitude we need as we face our day to day challenges. God bless us all!!

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• By johnh
• Posted September 13, 2008 at 3:39 pm

Clio:

These are all great responses. Get your brother-in-law to come to this sight. Nephrotic sundrome is tough because your become thirsty even though you tissue is surrounded with fluid so you can drink much, you feel low, and you have salt restriction, you can just feel stuck.

How I got through... Sugar free juice pops, good books, a reclining chair that allowed me to put my feet up, and lots of support from family.

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• By ALE2003a
• Posted September 16, 2008 at 5:52 pm

Hi Clio

Let me start by saying if it wasent for this website I would feel like I was totally insane. It gives me more information then the doctors do. For example My cholestrol shot up to 424 and my neph swore up and down that I was eating badly. I signed on last week and read up on how this is happening to a lot of people.
As far as what your brother has to look forward to, the picture is not pretty. Every body is different and responds different but a lot of the symptoms are the same. Here is my story and I hope it can shed some light. I am going to try to scale it down because I could write an entire book of what I have been through.

Pre diagnosis- Edema of legs, extremly high bp 200/100, just feeling tired

Diagnosis Feb 08- MPGN Type 1. Started on Prenisone 60mg daily. Blew up 60 pounds in three weeks. Could not walk, body could not handle the excess weight. Eyes were so swollen I could not drive. I had fluid surrounding my lungs and devoloped ascities around my stomach. I could not eat due to the pressure on my stomach. I was laid up for about six weeks before they decided to admit me in the hospital and drain 22 pounds of fluid off of me in one night. They then decided that my body could not handle that amount of prednisone and began to lower me. I am still on 15mg as of today but am damaging my kidneys even more because I still have to take the water pills for even that small dose. My albumin is perfect but I am still having noticable swelling. The doc said its the predisone and not my kidneys.
May 08- Was so weak I could not walk up a step or push myself out of a chair. I begged my neph to send me to physical thearpy. When I was evauluated by the therapist I had lost 90% of my leg muscles. Partialy due to the extreme protein loss and secondly to laying on the couch for six weeks. I would cry one minute and be laughing the next and then be in a fit of rage the minute after that. I was an emotional trainwreck.
Let me not forget to mention the pain. Everything would hurt from toes to knees to elbows, you name it, it hurt and I am still dealing with that today. At this point though it is mostly due to the weaning of the prednisone. This is the way it has been up to this point like I said in the begining, not a pretty picture. But I feel that there is no need to sugarcoat anything because I just wish I would of known what I was about to go through when I got diagnosed.

Today Sept. 08- Feeling like a new person. Had to make many life adjustments as far as what I eat. I also just had to accept the fact that I cannot do what I used to (at least not of yet). I was out of work for 4 months due to this. But I am now back working fulltime. Its hard to get my feet going in the morning (due to pain) but I have a strong determination to beat this thing. They tell me there is no cure but I will not believe that. I use positive thinking for every thing I do now. It has brought me so far. My neph calls me superwoman for all I am able to do now. Its a fight you can not give up on and never let them tell you, you cant win.

I hope some of this helps. I know it may be to much information but I always can learn at least one new thing from every response or entry on this website.
One more thing and then ill shut-up. Even if your brother never considered it before, The power of prayer is unbelivable. Try using that if all else fails.
Best of luck!!!
ALE

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• By maaxiim
• Posted September 17, 2008 at 8:32 am

I just wanted to add something about the high cholesterol; that's something I've been dealing with since I was first diagnosed. I was consistently looking at cholesterol of 4-500, sometimes it was even over 700. I tried rabidly sticking to a low-cholesterol diet, but it would continue to steadily rise. Eventually, we hit a combination of lipid-busters that worked for me and it came right down to normal levels.
By doing some independent research, I learned that the liver is responsible for producing albumin, which is the protein we all leak out of our kidneys. Since the albumin level in the blood is so low, the liver cranks up production and since it is also responsible for producing cholesterol, it cranks production of that too. End result, artificially elevated cholesterol.

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