Symptoms, or just life?

[Bruno]

Gee 2010, don't go away. I only found this site after I went on dialysis, I really wish now that it happened much earlier...I'd have been far more confident in those early months when I wondered what the hell was happening to me.

[cariad]

Another quick update on my medication and treatment adjustments.  The prednisone dose has been reduced to 35 every other day.   The myfortic dose has been doubled from 180mg to 360mg twice daily.   The treatment plan will still include the pulse treatments every other month, I still have 2 more of these, one in Feb, another in April. 

Um, I am really hesitant to keep harping on this, but every other day dosage is the worst way to go. That is the way that has been proved to end in everyone around you leaving pamphlets for mood stabilizers lying about in conspicuous locations. I remember this from my masters course in hormones and behaviour in which my final project was to sum up the effects of prednisone on mood. I read everything there was to read in the peer-reviewed journals about the effect pred has on mood and memory, and felt I learnt a lot about myself and my treatment as well.

The medical thinking behind every other day dosing is that it is supposed to mimic your circadian rhythms most closely. (People with normally functioning adrenal glands will start to release cortisol, which is what prednisone is trying to fake, just before you wake up. Makes sense since cortisol stops you sleeping, gives you an energy boost, and tells you to eat.) However, short courses of prednisone lead to mania, long term leads to depression. Every other day dosing often finds people manic on the day they take it, depressed on the day they don't, and showing all the symptoms of a rapid-cycling bipolar. 35 mg every other day is an improvement, but is still quite high and is there a reason you couldn't just take, say, 15mg every day? (Or if your nephrologist is really particular, 17.5 a day?)

Just a last bit of info for your own interest: With prednisone, please keep in mind that your adrenal glands have most likely shut down by now. (They get sleepy when you do the work for them and bring your own cortisol to the party.) That means it will be dangerous to just stop it, you have to give your adrenal glands a chance to ease back into work. So if you do get fed up with it, do not stop cold. It can kill you. I came close myself. (Your blood pressure will crash and you will go into an Addisonian Crisis.) You seem like a calm and reasonable fellow, so I don't reckon you would do something like that, but I skipped prednisone all the time as a kid and it is probably some sort of minor miracle that I am here to tell the tale.

Good luck, and I am glad you plan on sticking around, even though people like me are going to be throwing their unsolicited advice toward you every once in a while.

[rsudock]

well said cariad!! couldn't have said it better myself!!

xo,
R

[mm2010]

Hi Cariad,
Again, this is another example of the genuine concern that the IHD family shows for its members.  Thank you all for your comments.

I have also read about all the bad stuff prednisone is know for, and of course I would never stop cold, and risk the condition you describe.  Basically my thinking goes like this, and right or wrong, I will have to live with this decision.  The studies have shown that some do respond favorably to the treatment plan I am following, under the guidance of one of the leading nephrologists here in Toronto, Dr. Dan Cattran.  When I met him, I was convinced that he has my best interests at heart, and I trust him.  He explained there are risks, and he indicated that because of the rate of progression that I show, it is not going to change if we do nothing.  He also explained that they have had good results with some patients and it will take 6 months of careful monitoring to see if I am one of those patients. 

So I agreed to follow this plan, and take a very active part in the study of this treatment, to see if it will help me.  I accepted the risks, and the biggest challenge for me now it to carefully watch for signs of side effects.  So far, I have seen nothing that cannot be managed.  Be certain I will be calling Dr. Dan, the second I see anything of concern.  I really do appreciate all the feedback.  Its the unsolicited comments that get me thinking, and I welcome them always. 

[okarol]

Just thinking of you mm, and hoping you're doing well. 

[mm2010]

Hi All,,,
Well, lately, the last 4 weeks, I got so sick.  I would have to say the worst cough/cold I have ever had in my 47 years.  The cough is still hanging on, and with all the medications I am taking, they told me that I have avoid anything like aspirin, or cough suppressants, so, it was "tough it out", and hopefully it clears up...

I'm still not completely better, but those first 3 weeks were pretty rough.  Cough cough cough cough, spit, gasp for air....... REPEAT...  I suppose its possible that immune suppression therapy might have made me susceptible to the nasty bugs out there...

Overall, I am tolerating all my medication well, and except for the occasional bout of "roid rage", which I recognize when it happens, I'm doing just fine.  Back to the Neph end of this month to see if we are getting any positive results from my current treatment plan.

okarol, thanks for checking up on me....
P.S, we got a over a foot of snow in the past week, its just awesome..  JD and i become really good friends when it snows.... JD is our  "John Deere" tractor, not "Jack Daniels" 

[kellyt]

I, like you, was never really sick all my life.  Allergies, but not much else.  I was diagnosed with CKD in the early 90's and I didn't transplant until Nov 2008 (never on dialysis).  But it was only in the last maybe two years (2007 and 2008) that I really started showing signs of this diesease.  I got the hand cramps, too.  I would also get pretty severe leg cramps (mainly hemstrings) at night when I would bend my legs.  I was told that was due to high potassium levels.  I was never over the range for potassium, but I was at the top of the range.  My only other symptoms was fatigue and muscle weakness.  There were days I just couldn't get up and there were days that were great (great for me).  Very normal for this disease, but I agree that being short of breath could be lots of stuff, including fluid in or around the lungs.  See your neph regularly.