Prednisone - love it and need advice. Help please.

payitforward · Tadpole Joined: 21 Apr 2007 Posts: 28

Hi..

Wow - what a note. I'm running for the hills as we speak! Yeah I carry around my own bag, but I see you have yours as well. That is alot of medication. I've heard of folks taking many of those med's before - so thanks for that - its helpful.

I'm hoping that Imuran backs this Lupus jazz off my flipping kidney's but its too early. I regretfully have to say that I'm still having problems with my kidney's so I don't know where this is going to go. My heart rate is actually normal on the good side of things - I think I'm having a paradoxical reaction or something to prednisone - because when I was weening off - up went the heart rate -- up on prednisone down goes the heart rate..so this is good.

Imuran - still a mystery..a bit nauseated for sure..no appetite at all and headache -- which aren't huge deals for me all things considered - I'm not throwing up so I can tolerate the other jazz.

I've read somewhere that folks try to use Imuran instead of prednisone...and my doc says she doesn't want me on high doses for the long haul - but I'm wondering what's the big difference - they both have serious side effects...so we'll see where it all ends up to early to say.

OH - what time of day do you take Imuran...I took it in the afternoon as was sick about 4-6 hours later...sorta odd.. I was thinking of taking it before bed though I wonder if I'll be pulling an 'anna nicle smith' and run into some drug interaction thing..sigh - good lord these doc's and all these drugs...i have to make an appt with my internist to have them get all this by the reigns and monitor all this medication.

they also gave my xyrem - which is 'the date rape drug - its some seriously controlled substance that has to be delivered to my house - can't even get it at the pharmacy and you have to go through this little orientation thing...its weird....i'm SUPER nervous about taking this medication...talk about knocking a person out...i'm not sure if i will even take it -- i may try it once but if it causes anything weird - i'm done....i tried provigal for fatigue and that just caused me heart troubles so i stay off that - but i miss stage 2 of sleep and this drug is what they use...i'd never heard the actual 'real' name before...but its goofy i go instantly to sleep and then have to set alarm for 3 hours and take another dose...seems strange to me....but we'll see....lol, i'm such a chicken lately when it comes to medication....

one of the things i'm trying to avoid is the cocktail your on...we seem to have similar symptoms or problems - i think i could be on pretty much everything your on -- other than the fact that my other condition prevents one or two of them from my memory - can't remember which ones impact blood pressure...but if prednisone or even imuran takes care of the majority then i'll see what i can live with...i would like to talk more specially about each of those meds - but maybe i can search on them and see if there's anything on the forum...

thanks for all the feedback though..very helpful....we're all pill poppers here i see.....i don't know how you work...sometimes and most of the time its all i can do to get out of the chair....and naturally i've been not moving fast enough and have been cut a few times by the door closing to fast wanting to throw me into the house...lol, its possessed...nah, its just needs to be adjusted - think my son would do that - NO. Notices the blood on my feet and all the markings on my feet and legs for that matter..sigh...

speaking of that boy...we'll i appreciate your honest answer....i'm afraid my son may be in the same boat....its a nightmare for sure....not sure what to do about him....i just don't know how all this happened...wasn't what i imagined, what i gave up so much of my life and aspirations for - if I had known i would have went to law school - we had him in college so i didn't go - i wanted to be a good dad and be around my child -- uh, who knew that was going to be so productive! Smile

Now he's just so spoiled and self centered he makes me crazy - and he seems not to care at all that all the stress from his is not exactly very good for me - but doesn't seem to phase him...still breaks every rule he can...rebellious little ( or big actually ) bugger....

IT is fun in many ways and i think i'm more like you - i definitely get bored with code, though i always did like to troubleshoot it and find the problems - now that i like about coding...but taking the time to write the darn programs...unless they weren't huge...snoring time for me.....

I have to run but its been good talking to you....hope you are feeling well and look forward to hearing from you....curious to know if Imuran made a huge difference in how you feel or what did it do for you??

thanks....tc.

mnjodette · Posted: Wed May 02, 2007 5:35 pm Post subject:

Hi again. All of these medications have side affects - no doubt. And everyone's body is so different. And lupus is such a 'moving target' there's no telling what it may do next. Not to mention the fact that you have so much else going on. How these meds work for me will be quite different than how they work for you. Imuran seems to be helping me manage my symptoms (or something is working anyway - it's not always easy to know what it is!) The hope is that it will work well enough to allow me to taper down on the steroids. Steroids bad - imuran good (or at least better!) My hope is to get off a lot of these meds in the next year, but I'm just taking it as it comes. I have a good doctor who really listens to me and is willing to research new stuff if she thinks it'll help. I feel lucky. How are your docs? Are you satisfied with your care?

My husband loved the programming aspect of his job, but he really hasn't had a chance to do much of that for a really long time. Management of the shop didn't allow for much of that. He just retired, but he's going to do some consulting now and he's looking forward to the change. (He say's too young to just sit around - that would be OK by me, though...maybe he'd clean the garage!)

Don't write off your son yet - our son went through some really lousy stuff and I spent countless nights crying and walking the floor. I really thought we'd lose him - suicide, car crash, whatever. But, even though he still struggles, he's sooooooo much better. There is hope - there is ALWAYS hope.

Be good to yourself - find a way to relax and let the stress go. Yoga, meditation, a good book, a hot bath...whatever it takes. You've earned it and I'm guessing your body needs it.

Talk soon.

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron