IgA nephropathy - What are you on ???

[mm2010]

Hi everyone, 
Only my second post, but I wanted to share with the list my current treatment plan, and the stuff I'm taking as part of my Nephrologists strategy to slow the progression. 
Here is my meds and touch wood, no serious side effects, yet, but its only day 2.  I also have a new BP machine, "Life Source".  It allows me to keep an eye on my blood pressure now that I'm taking all this new medication.  BP is usually at 110 / 75, pulse around 60 bpm.

Myfortic                      180 mg   every 12 hrs no food
Prednisone                  70 mg   AM with food
Omeprazole                20 mg   once daily
Calcium Carbonate      500 mg   3x daily with food
Avapro                       150 mg   before bed
Crestor                       20 mg   before bed
Ezetrol                       10 mg   before bed
Vitamin D                   800 IU   per day


My last Neph visit showed creatinine levels at 170, which I am told is bad.  My function is still in decline, GFR 42, down from 53 in 6 months, and the hope is to flatten things out to delay any further progression.  Here is a link to an article about my new Nephrologist, has anyone else ever met him?  http://www.kidney.ca/Page.aspx?pid=434

So, does anyone else have any experience with high doses of steroids, side effects, results?  I'm up to 16 pills a day, some of which are steroid, others are to help with side effects, and others are for cholosterol and blood pressure.  Any tips on the best way to take handfuls of pills?  I'm finding a spoonful of yogurt a great way to get the suckers down.

[MooseMom]

I take a mountain of pills each day, and frankly I've not found a way to make it easier.  I don't use the yogurt method because yogurt is too high in phosphorus for me.

My neph went the immunosuppressant route instead of the steroid route, so I took cyclosporine instead of prednisone.  It was effective for 6 years, but then my egfr went below 20 (from around 22-25), and my neph decided that they cyclosporine may have crossed the line from being anti-inflammatory to toxic.  I've never had any bad side effects from any of the drugs prescribed except for Crestor...I'm apparently allergic to it, so I switched to Pravachol which is just an older statin.

Good luck to you.  It's good that you are taking an active role in your treatment.  It's important to know what you are taking and WHY.  Keep records of all of your labs and you'll be able to eventually spot trends.

[Bruno]

My difference to yours at the stage you're at was Avapro, mine was 300g. We managed to delay mine by 4 years...it took that long for my kidney function to fall from 25% to 6%. But you will know yourself when it's time. You feel like a dead dog. Don't leave it too late as so many do (myself included)

[rsudock]

wow i had no idea that nephs were giving antirejection meds to prevent kidney failure too!!

In regards to high does of steroids and side effects...high blood sugar, necrosis of the bones (which is why my bro had to get a hip replacement at the age of 22) over growth of the gums, mood swings, high cholesterol, nausea, stomach pains, diarrhea...aw the joys of steroids!

[ashwee]

My mum was on about 16 types of meds and about 20-22 a day plus 2 injections every f'night. once she she had her fistula op she dropped 9 pills a day all for blood pressure... which is good... in taking the pills she just does it the old fashion way, class of water. She's never had steroids, but good luck

[billybags]

First of all welcome to the site mm2010, my husband has  IgA nephropathy, he was granted  abut five years before he went on to dialysis two years ago. I do not know about the tablets you take because we live in the UK. diet is most forward in our minds. You need tablets but you also need to watch your diet, it helps a lot. No salt, no alcohol, nothing with a lot of potassium, my husband does not have much dairy, little cheese now and again.  Check out renal diets. Check out what you can or can not have.He was not told about the dietary things until he went on to dialysis. Your GFR still looks good.

[Deanne]

I was on high doses of prednisone for FSGS several years ago. I don't see Pepcid on your drug list. Are you taking it? I had almost every side effect in the book when I was on prednisone. Literally. The book was called "Coping with Prednisone." It was awful. I ended up in the hospital because one of the side effects was high blood sugar. My blood sugar went up to 1500. I could hardly walk after two weeks (muscle wasting). I couldn't function after 2 pm every day. I turned into a  zombie. I found out daytime talk shows are repeated in the middle of the night.

I hope your experiences are better!

[tyefly]

  I take my pills   which is way too many ....roughly about 33 per day....spread out during the day.....I take them with water and sometimes Milk....  I am not worried about the phos in the milk cause I dont drink alot...but sure helps the stomach....  Some of my pills are 6 fish oil pills a day...... and then the many binders....  way too many pills.....Good Luck 

[Brightsky69]

Hi -   

I have IGA Neph. also but they didn't figure it out until my kidneys were at less than 10% function.
Thanks a bunch US Navy doctors!!

I am on my 2nd kidney transplant.

[sutphendriver]

the steroids helped me gain ALOT of weight at first, around 80 lbs!  Took a while to get it off, so my advice is to exercise religiously!  Keeping your body in its best possible physical condition will be key in your mental and physical ability to deal with your disease.  I take alot of pride in the fact that even after a failed transplant and 3 years of D, my 5K time is still under 25 min and I can still pump out 10 -15 pull ups at a time.  I'm approaching 40 years old and my doc and I am convinced physical fitness and a clean diet is THE key to combating the side effects of kidney failure and its treatment.  Good luck....see ya in the gym!

[Stoday]

The greatest gain I found from starting dialysis was the reduction in the number of medicines I was taking and the lack of edema.

[mm2010]

Thanks for all the feedback everyone, I'll try to comment on each item.  Keeping records of the labs sounds like good advise, even if I really don't understand them all just yet.  I was told that my rate of progression is alarming and unusual.  This attempt to use steroids to slow progression is a shot in the dark, but its a shot none the less. 

So far, I still feel OK, so I'm trying to make the most of my time learning, and getting prepared for the future.  I'm not in any hurry to start D, but I'm also not going to let it be the end of the world.  I hear good things from many people here who have adapted, and I can also adapt.  I have a wonderful family and my wife is very supportive.  We will get through this, no matter what.

The anti-rejection treatment is also a bit of a shot in the dark.  There are some studies showing this may help, but right now we just don't know what will happen.  We do know that if we do nothing, then dialysis is not far off, ( estimate 18 months to stage 5, if the rate of decline does not accelerate ), but I am told the rate could also increase.  We just don't know. 

Diet, well I'm not a drinker or smoker, I don't eat much dairy, and I'm off peanut butter.  I avoid banana, but I do love my clam chowder.  I suppose that's another one high in salt I will be giving up.  I eat to stay healthy, and its not a big concern to have to live with a modified diet.  If it will help perserve function, I think this is one of the easiest things I can do.

Steroids are a bit scary for me, and I recently learned that in addition to the pills, they plan to start me on "Pulse Injections".  Three days in a row, every 2 months.  On those days I won't take the pills, but I will be making a trip the the dialysis center to have the treatment done.  My very first visit to a dialysis center.  I get to try out the chair for 1 hour while they "pump me full of steroid."  I have no idea what to expect after that.  Anyone ever had a pulse steroid treatment before ?  I'm thinking the pills don't seem so bad after hearing about this treatment process.  Stay tuned...

Taking pills with food has been the easiest way to get the suckers down.  I have this routine now where a big spoonful of yogurt, toss in a handful of pills and don't chew.  It all slides down without any nasty tastes left behind.  I bet Jello would work also. 

We had a dog on steroids way back, and the poor guy puffed up like a balloon.  He was all fluid.  I'm hoping that the dry air and lots of exercise will help me manage the fluid retention.  I'm starting to see a bit of puffy around the eyes in the morning, and this on only day 4, on pills.  Not sure what to expect next.  The bone loss is also a big concern, hence the calcium supplements. 

Thanks everyone I hope I commented to all, I will update everyone later, after my "Pulse Treatment", I start round 1 tomorrow morning.  I expect I am going to see some things in the dialysis center that may be a bit shocking, and I am hoping to meet the techs there and pick their brains if they have time for me.  It will also be an opportunity to see others doing dialysis.  I am not sure if there is any etiquette for the dialysis centers, so if anyone can share any thoughts on proper behaviour in a dialysis center, I would love to hear from you.  I would like to talk to people there, but I don't know if its appropriate.  Anyone know people who go the the Oshawa Hospital for dialysis ?

Mark

[MooseMom]

wow i had no idea that nephs were giving antirejection meds to prevent kidney failure too!!

I guess it depends upon the underlying disease.  I have fsgs which is inflammatory in nature.  My immune system attacks my own kidneys, so they become inflammed.  The tissue heals but becomes scarred, and scarred renal tissue doesn't purify your blood.  That's why it is "glomerulosclerosis"...the glomeruli become sclerotic, ie scarred.  So the idea is to dampen the immune system, hence the use of immunosuppressants.  But these drugs are also renally toxic, so it becomes a bit of a balancing act.

I know that some nephs use steroids to treat fsgs, and frankly, I've never understood why my neph chose to go the immunosuppressant route.  I take that back...he did tell me that steroids have bad side effects, so I guess I'm lucky that my neph chose cyclosporine.  It worked for 5 years, and I didn't suffer a single side effect.  Steroids sound like no fun at all.

[mm2010]

Hi Everyone,
Just a quick update, and my first ever visit to a dialysis center.  The staff there treated me like a king.  I was pampered beyond belief and the facility was beautiful.  Lots of people getting put on and taken off in the 3 hours I was there.  I received literature about kidney treatment options, and the chair was not all that bad after 3 hours, only a minor discomfort from sitting still. 

The amazing part was the people.  Some in very serious states of illness that make the dialysis portion of their condition trivial by comparison.  Many diabetic patients, some with amputations, and others with vision loss.  One individual volunteers at the dialysis center, diabetic, almost totally blind, but walks through the ward, meeting people, and telling his story.  He really put me at ease. 

As for my steroid drip treatment, no issues.  Got the 2 hours of IV, and drove home.  It wasn't until later at night that I noticed I wasn't feeling cold, as I usually do.  I also noticed that I was typing like crazy, catching up on email, from the missed day at work.  Then, I looked at the clock, and it was 2am. yikes, I should have been asleep hours ago.  Went to bed, tossed and turned until 4:30am, and I think I got 2 hours of sleep.  Got up early, and here I am typing like crazy again.  Seems there are some side effects to this treatment after all.  My brain seems to be in overdrive, and I have a lot of energy.  This can't be good.   Stay tuned, I will send another update after todays session. 1 down, 2 to go.

[Deanne]

Yep - the night time energy thing was one of my side effects, too. To make up for it, I "crashed" at 2 pm every afternoon. Couldn't think, couldn't focus on anything, turned into a zombie. I didn't even need a clock to know what time it was. At exactly 2:00 every afternoon, it was like someone turned off the lights in my brain.

[LostWife]

Hi mm2010,

My husband was diagnosed with IGAN in 2000.  He was on predisone for a few years and boy did it take a toll - he gained a lot of weight!  He was ALWAYS hungry.  Then that stopped working and we went to a specialist and he said to try Cellcept.  Cellcept gave him 5 more years of not having to do dialysis.  I will always be grateful for that!

[mm2010]

Well, round 1 done, and we start again in 2 months.   There are 3 dates scheduled for my pulse treatments, 2 months apart.  My first treatment of 3000mg of pred is complete.  I'm told this is a very high dose.  We did 2 hours of IV drip, with 1000mg of prednisone, each day for 3 days.  Essentially I was the star of the dialysis center, being some kind of experimental case, the staff and patients were all very interested to hear what I was doing there.  I have to say, it was nothing like I expected.  Of all the places to have to spend time in a hospital, dialysis was not as terrible as I had imagined.  On the last day, we took a gift basket of cookies and chocolate to the staff in the ward, they really like me now. 

As for side effects, nothing to major.  I can't really notice any serious issues yet, but its still early.  I do think my brain is running on overdrive, I am reading, typing, and powering on through the night, but I do eventually crash the next day.  I'm hoping its a simple matter of learning to re-regulate my sleep patterns to adapt.  As for weight gain, that's the last thing I need.  I gained about 30 lbs 10 years ago, when I gave up smoking, and I have never been able to get back my fit appearance.  More weight, I really don't need.

I'm at a loss when it comes to evaluating my options.  If I stay on steroid, and it helps to delay dialysis, I suppose this is a good thing.  But at what cost?  Would I be better to be on dialysis, and avoid all the steroid completely?  I am also taking anti-rejection medication, as part of the experimental procedure, and its all very troubling to think I might be doing more harm in other areas, all to delay dialysis, which ultimately will be the only option in the end. 

Of course the transplant question comes up, along with all the other modalities, but for me, I think home hemo would be my first choice.  PD is not for me.  One tech told me, "Your young, you should get a transplant, if possible." I'm not convinced its the best option.  I'm more than capable of adapting to the routine of home hemo, and if I can obtain the best quality of life by doing dialysis, and avoid all the nasty risks associated with the medications I am taking, then maybe its better to accept the idea of dialysis and spare myself some suffering from complications with all this medication over time. 

For others who managed to delay dialysis using medication, was it all worth it?  And when you finally did end up doing dialysis, did your quality of life improve?  I met a wonderful woman at the dialysis center who was also diabetic.  She explained that before dialysis, she was sick for months, and had to leave work.  After starting dialysis, in only 5 months, she told me that she is feeling 100% better.  She has more energy, she has adapted to the routine, and is able to rejoin the workforce on a part time basis.  Her story made me wonder if people who live on dialysis  enhance their quality of life, or is dialysis a horrible existence to be avoided at any cost?

As it is today, I still have reasonable function, but I am in decline.  If the medication buys be some time to postpone dialysis, but I end up with complications from the medication, then I'm going to be asking why I bothered risking the medication in the first place.  It would be great to hear from people who have gone the medication route, and help me evaluate if its all worth it.  I suppose until I see harmful effects from the meds, its difficult to say.

One other part of the experimental treatment that I am doing is bloodwork.  Weekly blood work is being done to track if we are making difference with the medication.  Its all part of the process to get a good sense of the effects the treatment is having.  I was told that I need to be careful of my veins when getting bloodwork done, and wondered if there is any recommendations from people who get weekly bloodwork on the best ways to do this.

I'm back to pill form of steroids for the next 2 months, regular blood and urine testing, and monthy visits to the nephrologist.  Its going to be interesting to see if this treatment is having any effect.  I wonder how long I should continue in hopes of seeing positive results without complications?

Thanks to everyone for their comments.

[MooseMom]

Again, I went the "medication route", and as far as I can tell, so far it gave me six years of a dialysis free life, and counting.  It won't last forever I know, but six years is six years.  I didn't have any side effects, but as I explained earlier, I was never on steroids.  I personally seemed to tolerate the cyclosporine well.

There is no bloody way I'm going to be on D the rest of my life if transplant is a viable option.  Transplantation is, for MOST people, the treatment of choice because kidneys do a better job at so many things than dialysis.  Your kidneys regulate so many things that an artificial kidney simply cannot regulate, anemia, for instance.  Yes, the meds have side effects, but my God, so does D.  It's great that you're thinking of doing SDHD...that modality, along with nocturnal, are going to give you better clinical results.  If at all possible, stay away from the thrice weekly, in-clinic modality.  If you are healthy and capable, there is no real reason do go that way, anyway.

I am on the transplant waiting list, so that's where I'm placing my hope.  There are indeed IHD members who are happy and well on D and who do not want a transplant, and that's their choice made for valid reasons.  I would recommend that you do whatever it takes to get optimal (not merely "adequate") dialysis so as to keep your body as fit as possible, and perhaps at the same time, have a pre-transplant evaluation when it is appropriate to do so (when egfr drops below 20, generally).  You can always say no.  You can be waitlisted but still say no so that you can at least accrue time until you are really ready.  Keep your options open.  I've had several years to decide what to do for myself, and I was always changing my mind.

Good luck and keep us posted on your thoughts in this regard.

[Stoday]

For others who managed to delay dialysis using medication, was it all worth it?

I found a big downside the hard way. For some 7 years my kidneys slowly declined; creatinine increased slowly and steadily throughout. This meant that it was difficult to say when I should start dialysis. Too late, I got so ill that I could no longer take my medication because I was sick all the time; I didn't eat and I drank too little. I finished up in hospital for 8 days and started dialysis on the 6th day. It was like falling off a cliff. Later I found a check list "Clinical Features of End of Life" with 10 tick boxes. I ticked 5 of them! 

And when you finally did end up doing dialysis, did your quality of life improve?

Immensely. Resurrection is, perhaps, the most appropriate word. That's really because I started too late.

 Her story made me wonder if people who live on dialysis  enhance their quality of life, or is dialysis a horrible existence to be avoided at any cost?

I believe your mental attitude is by far the most important. If you can accept your lot and treat your disability as just one of the slings and arrows of outrageous fortune and make the best of it, you'll do fine. On the other hand, if you despise your luck, blame Fate and yourself, then dialysis will indeed become a basis of a horrible existence.

I'm happy with my lot. I have only one bit of advice: be very careful to start dialysis in time; don't leave it too late.

[Deanne]

I'm at a loss when it comes to evaluating my options.  If I stay on steroid, and it helps to delay dialysis, I suppose this is a good thing.  But at what cost?  Would I be better to be on dialysis, and avoid all the steroid completely?  I am also taking anti-rejection medication, as part of the experimental procedure, and its all very troubling to think I might be doing more harm in other areas, all to delay dialysis, which ultimately will be the only option in the end. 

For others who managed to delay dialysis using medication, was it all worth it? 

I had these same questions when I was on prednisone to treat my FSGS, and for a long time afterward. The prednisone side effects devistated my life for a long time. In hindsight, for me, yes, it was worth it. It's been nearly 15 years since I was on prednisone. When I started it, I spilled 10 grams of protein a day in my urine. I was probably headed for kidney failure within three years. I had to discontinue prednisone after the side effects landed me in the hospital, but the medication dropped my protein spill to less than 2 grams a day, and once I recovered from the side effects (took several years to fully recover), I've been able to live a relatively normal life. My neph had me try cellcept and cyclosporin after prednisone, but there was no further benefit for me from either of them.

[Bruno]

All I can do for you is agree entirely with Stoday. The other thing I would emphasise is that dialysis is not the end of your life, it can be the beginning of a new one. Life is what you make it and the first step is to start organising your treatment to produce the outcomes you want...that's what Moosemum is saying.

[mogee]

I wasn't treated with prednisone or any other powerful drug.  I was given an ace inhibitor, a diaretic and Rocaltrol, activated vitamin D.  I am grateful to my nephrologist for her conservative approach.  I can't imagine doing anything differently and still enjoying the health I have today, even on dialysis.

The quality of dialysis available must factor into whether the high dose stuff is worth the well documented palette of side effects.