May 8
So today I got the news from my doctor, my ratio is 2.5. If I go much longer I am going to slip into nephrotic range so back to prednisone. Tomorrow morning I begin 80 mgs a day, probably for 3 to 4 weeks and then begin the taper.
WHAT'S DIFFERENT THIS TIME?
I hope to handle the compulsive eating that prednisone contributes to. Wish me luck
May 9
First day at 80. Not bad. Cool energy boost but no racing feelings. Really barely felt the predinsone. But work was very busy maybe this is why I had no cravings. Good thing I got start. Darkest green on Albustix this morning. Feel positive about this relapse, hoping it will clear in three weeks and can start taper.
May 10
Great weather in Vermont. Up at 3:00 AM with my first steroid rush. And day two is definitely different. Ran a 10 k road race in 44:45, which is a good time for me and compares with times when in remission. But got home from the race and wanted to do so many things outside, instead was feeling slow. Planted some flower pots and finished a wooden clock case I have had, as a kit for ten years. Odd that it was given to me by my mother, who died 7 years ago. Her mother's day gift to me. I have been thinking of her as I sanded and oiled the clock. So I am definitely feeling the steroids now, its 9:00 PM and my face is flush. I am alert.
Binged on low salt rice cakes and peanut butter today as well as cottage cheese ( which is loaded with salt and I think I knew it when I ate the whole quart container). Tomorrow's mother's day. Traditional gardening day, though my wife is going to be swamped with getting her grades in to the university.
May 11
After a not so great night of sleep I had a great day. Ran a Mothers Day 5K. With a good time. Spent the rest of the day clearing and burning brush. Really constant motion. The space around the house really looks great. Moved a small primitive stone wall. Cravings were moderate considering the high level of activity. On a 1-10 scale, my day was a 7. My wife and daughter had been away for most of last week and today were so busy with homework that we have still not had any family time. It is bound to get better. Hopefully getting well.
May 13
It is 3:00 AM and can't sleep. I'm okay with this and about to do some home paper work. A little anxious about 6 hour workshop I am running at work today. Good day yesterday. Lots of energy but not bizzaro, though my wife called me grumpy. I think protein leakage is beginning to drop. My voice sounds a little like laryngitis, no sore throat, this is just something that happens at the beginning of remission for me, like my throat is dehydrated or something. Weird huh! Back to bills.
May 18
I reached trace levels on the 15th. So starting on the 22nd I will start my taper. The fastest that has worked. I hold 80 mgs a day for a week after I reach trace levels, then go to 60 every other day for 16 doses than 20 every other day for 8 doses. By July 4th if all goes well I will be prednisone free, hopefully for another 4-5 months. I ran a great 5 k on Thursday, 21:30. Wicked cravings now. It is like I can not get enough food ouch. Trying to be as physical as possible, to stay outside. My wife says I am running at 78. Have been up reading for an hour at 2:00 AM. It will be good to go down a bit next week.
May 19
Food glorious food! I just stuffed myself all day long. Work is very stressful now. Worked through lunch. Definitely feel jagged. Swelling between my ribs and lunges, which has got to be the prednisone and too much salt. The first week at 80 mgs a day, no big deal. The second week, OMG! This is not good. Outwardly, I suppose I am pretty much who and what people expect I am. Inwardly I can hardly sit still, especially for the three to four hours in the morning after I take the medicine. Tomorrow, I am going to try some other approach, deep breathing I think. Later.
John the wired man.
May 20
Much better day than yesterday. I slept well. A full six hours, which is good for me at higher levels. I started it out this morning with some upper body exercises and a short jog and then ate normally. I was much more centered. I actually followed my advice from last night and did some deep breathing just to chill. Vermont is so amazingly beautiful this time of year. Had my first eye exam in 3 years. Ocular pressure was fine, which is a concern with prednisone.
May 21
Great day today. Lots of exercise helped keep me calmer. Work was low stress, away from computers, phones and deadlines. Really no binge eating. So I feel successful in staying clear headed, balanced and able to deal with life as it comes.
Tomorrow is my first day of my taper. I will not take prednisone and will go to 60 mgs every other day for 16 doses. Off days can be really down, if I remember.
May 25
Yesterday was a non-dose day. Good energy throughout the day. This is week 3 on steroids and I now feel them in my cheeks, that puffiness must be coming in.
May 27
Yoga on the 25th. Very sore on the 26th. Nothing to do with MCD or medicine. Just haven't done yoga in a long time. 5k race tonight. Hoping to do well, push hard and have fun.
May 28
60 mgs on alternating days!
Here's the difference.
Medicine days: Totally wired in the AM. Have trouble sitting still at my desk at work. Binge eating. Calming down in early afternoon.
Non-medicine days: pretty normal, much calmer, able to focus in the morning.
I wonder if I should try to take prednisone in the evening so that I am a little more normal during the work day? I'll have to ask this in a discussion group. Since this journal is getting a bit too long.
June 3
Taking my 60 mgs of prednisone at 3:00 PM is just the trick. My mornings are much less stressful and eating a more at dinner time is okay. Doing well.
June 11
I have been on Prednisone for a month now. NO WEIGHT GAIN. I have been religious about running daily and lifting weights on Mon, Wed and Fri. This is the first time of all my relapses that I have avoided the 10-30 pound increase. I feel successful, feel really healthy. I hope to do a personal record at a 5k on the 14th. Sub 20 minutes. I am fortunate that I can detect and treat symptoms of MCD before I become nephotic. Exercise at the intensity I am now able to do would be impossible once I have gotten into nephrotic syndrome.
June14
Great race. No personal record but close. 20:40 in 2005. Today 20:52. 12 seconds but the weather was hot. I beat a guy who almost always beats me. Used the fast start strategy for 5k's that I found at Runner's World.
June 15
Oops. Slightly elevated protein in urine when a little dehygrated from yard work. A little green edge around the Albustix.
June 19
Tomorrow marks the home stretch on taper. 20 mgs alternating days for 6 treatments. Yeah! I hope it holds. Major bingeing today, a half jar of peanut butter and a box of crackers, whoops.
June 23
Taper to 20 mgs, which is equivalent to 10 mgs per day going well, not to low at all yesterday, an off day. In fact had tons of energy. Maybe it was the long day light of summer solstice. Place 2nd in a community 10k on the 21st of June with a time of 41:50 that is 6 sub 7 minute miles, for a non-elite 50 year old runner that is pretty good.
June 28
Today I ran a 10 mile race in 72:50 which is 3 minutes faster that when I did the same race in 1986 and 1995! What is extraordinary to me is that I am still on prednisone. Quite a thrill at age 49. Just 2 more doses, tomorrow and 2 days after that and I am done.
July 2
I just took my last dose. Now I just watch and see how it goes. If it is my pattern I will stay in remission until late October.
July 6
Fatigue ( but not exhaustion) set in yesterday as well as inflamed joints in my hands. Mode is low, not depressed just needs a little more motivation to get going, I am not the EverReady Bunny now. In two months I had forgotten what 8 hours of sleep was like.