A rant...

[Sangye]

I don't get the good feeling from pred like many people. The high doses make me irritable and physically very weak. I hear people say they have a love-hate relationship with pred, but I can't find the love for it!

[vdub]

I was on pred three times before being dx'ed. Each time was a relatively short duration, but semi-high dosage -- 60mg/day with a taper. Total time was about 2 weeks each time. It was good stuff during those times. I was higher than a kite, felt great, and totally awake for hours at a time. Each time I gained about 10 pounds, but then lost it in between each episode. At least that is how I recall it, but it was over the course of the past 3 years and my memory simply isn't the same -- neither is learning.

After my surgery and dx, I was put on dexamethasone. I don't remember how I felt when I was on it, because I was kind of in a "wide awake coma" if that makes sense. I was in the ICU for 2 weeks. I remained on dex for maybe 2 weeks after the surgery and then was switched to 30mg of cortef, which remains today.

HOWEVER, my cortisone is replacement stuff, so I don't know if it effects me different than others or not. I have so many drugs that I can't totally determine which ones are causing side effects or what the side effects even are. It might be that some of the aches and pains are caused by the wegs or maybe the mtx or maybe side effects. I do know this -- I can't remember much short-term stuff, some long-term memory is gone, I have lows and highs, I have days where I feel good and days that I don't, I don't learn as quickly as I used to, and I can be very aggressive (probably the testosterone). There is more, but, hey, guess what? I can't remember......

One thing that I haven't considered is that maybe I'm just a jerk.... Good possibility!

[drz]

I find the pentamadine nebulizer meds the most hassle. It seem most of the time they screw something up and I have to either wait an extra half hour or hour while they get it sorted out. Twice i have had to come back the next day due to their screw ups. They have only got it perfect three times out of the ten times so far. They keep apologizing and have given me two free lunches of atonement, but I told the hospital apologist that I didn't want any more free lunches or apologies, I just want it fixed so it is done right according to the schedule. She called me today and assured me everything is set for my treatment tomorrow so we will see how it goes. Even when it is is done perfectly it still takes an hour so it is more time consuming. Good thing it is only every four weeks.

They screwed up today as usual even despite the phone call and efforts of two departments to make sure they had everything set up right. The respiratory department and pharmacy had both done their jobs well and doubled checked everything, but the admitting clerk at front desk had no clue. "Who are you, where do you go? what kind of treatment, I can't find your name on any appointment for today etc." She made three phone calls to get the info needed to check me in. I was more stressed than usual cause I really thought after they worked so hard last time that it might get done correctly this time so I was much more irate and complaining than before and demanded to talk to the CEO of the hospital. Their professional apologist for when they screw up was not working today so her assistant came to see me. She remembered me from some positive contacts years ago which might have helped and five minutes later I explained the history of my problems to the CEO who thanked me for the input and promised he would try get it fixed. He thought it was definitely a system problem, maybe problems in their computer scheduling system, or lack of training for the admission clerk but he said he would try get it resolved for my next visit in 4 weeks.

The pentamadine meds seem to have a bad taste and are a little irritating I think to the lungs, but its like the prednisone I guess as a necessary evil since I might need it to stay alive, as they think PCP would kill me if I got it.

[marta]

Too funny vdub. Maybe I'm a jerk too. I'm hearing Milli Vanilli in my head "Blame it on the pred, weight keeps climbing, climbing...''

I don't like the alendronate because of the above noted restrictions - empty stomach, stay upright, loads of water..... but I also don't like the pred because of the metamorphosis that comes with it. Yeah I know it keeps us alive and all, but sometimes it feels like it's keeping someone else alive, a different creature that has taken over my body and mind. The cytoxin was a bit of a mind game too because of all the toxicity that comes along with it, "don't let children near it - even the residue", "toxic bladder" "toxic urine" (who knew I would one day take a drug that would render my urine into a weapon???)

[MCC]

Hehe, I hated that pill too. I used to take it as soon as I woke up. Then I'd go for a shower, dry my hair etc, then it would be time for tea.

[Chris G]

I FINALLY took my Fossamax. But I took it with water and my morning coffee. It's either that, or not at all, cause I can't function without coffee. I didn't die, or explode. Problem solved.

[Sangye]

I didn't die, or explode. Problem solved.

ROTFL

[pberggren1]

After much consideration and talking with docs and holistic practitioners I have decided to go off Fosamax.

[elephant]

I always drank coffee with my Fosamax.

[Lightwarrior]

I don't get the good feeling from pred like many people. The high doses make me irritable and physically very weak. I hear people say they have a love-hate relationship with pred, but I can't find the love for it!

Ditto, I can't find the love for it either.