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Thread: Prednisone - love it and need advice. Help please.

  1. #11
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    I don't have any suggestions or advice to give here, but rather a welcome to our site and a great admiration for your courage and tenacity in dealing with your Lupus and other illnesses.

    Please know I am thinking of you.
    Missy

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    Default brian mary missy = thank you....

    Hi.

    I go to the doc tomorrow so I think I will find out a good amount of information - other than the stuff I can't because I have to wait for test results. Jeez - can I just say that it takes a long time to type a note - need to add Alzheimer's to my list I think or senility

    Brian - I'm actually really good on the attitude side. I'm highly motivated by my 9 year old son, which may be cancelled about by soon to be 18 year old who has been digging my grave for the last few months!

    They seriously need to devlope a pill to deal with teenagers..or maybe they have and its illegal - .....Anyway, for the most part I'm pretty good on the coping side - I have a good relationship with God, though I wouldn't say I'm a Bible thumper ( no offense to anyone ) - but I find it very helpful to stay grounded. I'm actually very ok talking about dying and that kind of thing which my family is not - but it took awhile and whole lot of tears.

    No one knows when their last day is going to be - heck I could get killed in a car accident tomorrow...so best to live each day as if its the last in my book and make sure those that you love know it because many people pass suddenly and are not given the opportunity to have closure or help provide closure with those they love and love them.

    Hope this helps - I do think the site is great and am actually shocked at the number of folks responding - its a good feeling to know there are people out there that care and can understand.

    Lupus is new to me and it is kicking my butt all over the place...I could probably type a list of at least 20 different 'complaints' of how I can't function or something that interferes with my life...that part is tiring...fatigue and pain are some of the worst for me...but there are many - others due to my other stuff though..

    I do wonder what the doc will say about the prednisone - if not that, then what? Something needs to put the Lupus in remission and I'm not that familiar at all with what drugs are used to fight it off -- and stop it from attacking my kidney's?

    Honestly, I don't even know if it can move or at the same time attack my heart or other organs? I've been having lots of heart issues this week and am wondering if 'maybe' Lupus has something to do with this? I don't know...

    Missy - thanks for the note...very kind of you to reach out....I appreciate it and if there is anything I can do for you just let me know. Since I can't do very much - I do like to help people - when able I'm on the computer alot - not a huge TV watcher so I read alot or LOL look at cars because we need a new one..so I research stuff to death!

    Mary - I'm so sorry to hear your in a wheelchair. I was lucky to rehab my way out of that for awhile, but I'll be joining you again soon...I don't like it so much - bought all the cushions for the back and butt and still that thing was so uncomfortable - I hope yours is better -- I needed the lazy boy wheelchair - then we'd be talking!

    Do you still work? I can't imagine what that would be like - I haven't worked in about 3-4 years now...spending time with family has been good...doc's in other states - been there too...it is hard and I can't imagine having to do that while working - though they should be understanding for sure...not like your getting any benefit from being ill.

    I've heard of the medication you mention - but need to some research. They have tried to give me some med's before for the pain - but its so complicated because of the cocktail I'm on already and it seems many impact the blood pressure which is a huge problem for me.

    I did get a magnesium, potassium calcium supplement to counter act prednisone...though honestly i've had 2 bone density tests and I'm fine...did the baseline and then follow up after being on prednisone and no troubles there..

    I do have some blood sugar problems - however it runs in my family my aunt and grandfather both died from diabetes - my aunt about 6 month's ago in her 60's and my grandfather 2 years prior in his 70's.

    In my mind I picture that the action prednisone has on my body is being very thoroughly used up and that is why I don't have all the complications many do -- because normally I am the king of side effects and paradoxical effects for that matter -- lol, besides the fact that I'm allergic to Florinef - which I cannot live without literally....makes your eyes want to cross I know...LOL

    Everyone seems very supportive here and there is much for me to learn. I have alot to read which I look forward too. Thanks for the info on the other folks maybe I will try and contact them.

    I have to figure out the PM thing - no idea how it works -- think maybe it goes to my email - not sure.. I don't have any messenger or anything cause I would get virus' and stuff from it -- and I don't allow my teenager on any instant message program so I don't have it installed... I know I'm a parent from the 60's - can't help it....being in IT and then not working I've fixed many teenager's pc's at the request of their parents-- probably who regretted that after I showed them all their messenger conversations or websites they were going too...for me its a good thing because my kids are scared to death to do anything dumb on the pc because they know i can find it -- if you type it i can read it - for that matter the other person too - think it helps keep them in line - some anyway...

    Thanks for being so open...and providing some relaxing confidence about posting about all the crummy personal type stuff...guess I won't worry about talking about bowel movement troubles here!

    Anyway, I will check into the Neuro stuff - sounds interesting...once this whole heart and bp thing for me get under control I can do more research...just tryiing to stay afloat at the moment...I can completely relate to those that say they can't even get out of the chair....its so me....and though its not great that others are afflicted this way, it is good to not be or feel alone.

    Thanks again for all the great feedback. I'm going to the doc armed with some information and we'll see how it goes from there... take care all....

    tc...

  3. #13
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    Payitforward, I just wanted to tell you how much I admire your attitude. You've got so much to deal with, but you seem to be handling it all with a lot of grace (not always a term applied to men, but it seems to fit here.) I hope this forum can act as a place that you can release what you're feeling, escape a little, vent a lot, and look for support. We're all in different places, medically and in lots of other ways, too. But, we all have one thing in common: illness has entered our lives and changed them forever. Your experience IS different, as Marycain points out. You know the eventual outcome of your illness, while most of us don't know where this disease will take us. Your strength in the face of that is really inspiring.

    I love your comments about your teenaged son. I have two sons (all grown up now, and one with a child of his own) but I remember sooooo well the teenage years. (Sometimes I wish I could forget them. :lol: ) There's something pretty scary about the transformation from sweet, inquisitive, fun loving little boy to sulking, moody, disgruntled teenaged kid! Seems most survive it, though, so there's hope. (And I do LOVE watching my oldest son deal with his daughter's moods, as she gets older. There is justice!

    What did you do in IT? My husband is just retiring from his job as CIO of a small university. We're both kind of techno-geeky so I'm always interested in that kind of thing. Being homebound, you must enjoy the boundless world of the Internet. I think it may be one of the best things to happen to those who have limited mobility and who have to spend a lot of time alone. It's not a substitute for friends and family (sounds like you have than covered, too!) but it's a nice diversion.

    I hope your docs find the right 'cocktail' for you to deal with the Lupus. You have plenty of other issues with MSA, and it would be nice if they can get a handle on the Lupus symptoms quickly. It's not an easy disease to manage, even by itself - and many have multiple diagnoses. Marycain has a wealth of information, and in reading her posts I see that she's shared some great ideas. I hope they're going to make a difference for you.

    Stay in touch. Many of us are checking posts often, and you'll always get a reply or two (or three...or four...or) I'm send good thoughts your way --- wishing for strength and peace for you, Payitforward! You're an added blessing to our group!

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  4. #14
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    Default imuran..kids..a bit nervous

    Hi. Thanks for such a nice note! I am so sorry its taken so long for me to get back.

    On Friday the doc put me on 60mg of prednisone a day - which is good I guess. Its brought my heart rate down to normal for the first time in awhile. Then I am starting Imuran today - and we went over all the possible side effects and I have to say I'm nervous - I hope I don't throw up, I hate that. I not usually nervous about medication, but this one I am - we talked about some other one - but she said it was strong and I said lets start with 'chemo -lite' -- so she said Imuran was pretty lite - because I'm a guy and a 'wuss' when it comes to throwing up. I don't make a good patient that way - I sweat and feel like I'm gonna die when I get sick -- I think it has to do with my blood pressure because it goes whacky - usually very low.....so if anyone has any experience with Imuran please share...little nervous here..

    Ah my son - the parental killer....I swear the child walks around with a shovel in his hand...you devote your life to your child, your hopes, your dreams and then slam - the alien arrives and your left scratching your head wondering how this happening.

    The same day I got my new cocktail - my son had ditched school during the week, then on Friday he was supposed to go to the doctor - which he blew off for the 5th time - for his girlfriend - costing me 150.00 - which he knew was going to be the place he just didn't care. So I was really 'hot' and let him have it - so he left - called in sick to work -- didn't tell us and was gone into the evening - just before 10:00 --- he's not allowed to drive anymore so he hung out with his girlfriend and one my friends called and invited us to the movies and I told them we couldn't go because my wife had to pick up my son -- and they laughed and said he was at the movies....finally my wife had had enougH ( usually its I'm to hard on the kid ) -- but she really laid into him and then we had a long discusion about his decision and where they were taking him for his future.

    I took his cell phone away permanently - giving it to a friend who brings my other son from school...they have 5 kids and lord knows they could use the cell phone and they'll appreciate it... So because of a GIRL and his DECISIONS he's lost his car priviledges and his cell phone....I cannot believe he so wrapped up in a 16 year old no less...but sigh he is -- she won't even call my house after friday - so her cell number comes up and a guy asks for my son -- so he was out of school yesterday sick and they were calling non-stop - all day -- then when my son awoke he wanted to go see her play soccer - LOL, I told him if he couldn't go to school he couldn't go to a game..and if he had free time and felt good he could at least pick up after himself around the house...unfortunatley he is going to have to marry someone who doesn't mind catering after his lazy butt. Though he'll do all the 'manly' work inside and outside the house - but nothing else -- and even then he needs a big shove....lol, anyway, another topic I think. It could be worse.....though I've threatened to send him to Canada if he gets this girl pregnant....

    Hmm...I did alot in IT - I ended up as an Executive - but I started more toward the bottom with Project Management -very minimal programming - some file-aid, sar, delphi ( hated it ), cognos, mainframe (love), java ( hate)....I managed around 200 people so I had my hands in alot of stuff....I'm completly old school - I love the mainframe -- its stable and is more reliable -- the darn Java GUI's are so problematic and everyone wants them to do everything but turn their car on! Nervermind the entire methodology which makes my head hit the table! LOL - what is your background.....If you want to send me a message if you think it will bore everyone that is fine - I have no idea yet how to do that- my mind has been so busy and tired....

    I do love all the posts and hope to talk to you and others - I enjoy the support and interesting comments and discussion.

    At the moment I'm a chicken about the imuran...I have such a weird body chemistry - sometimes I have the paradoxical effect of the medication in general nevermind the side effecs -- so its just a who knows.....

    Anyway, thanks so much for your comments and feedback...I forget if you typed it in - but is it ok to ask what medications are working for other people?

    Thanks and take care

    TC...

  5. #15
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    Hi! Actually, I'm on Imuran as well. My worst experience was that I got shingles almost immediately after going on the stuff. NOT a fun experience. I still have scars from it. However, you'll be happy to know I did NOT throw up. :lol: I'm a 'wuss' about that as well - I can't stand the feeling. (Can anyone?!) I have had some liver function test abnormalities with Imuran, so my doc has had to reduce the dose. So far, it still seems to be working, but she checks me once a month. I'm tapering prednisone (down to 12.5 mg now) and am on Colchicine (to combat recurrent pericarditis.) I'm also on Plaquenil for the general fatigue and soreness; am on Neurontin for a stubborn neuropathy, as well as a lidocain patch to work directly on the nerve pain. Let's see...anything else? I also have some 'scrips the doc gave me for my Raynaud's and Sjogren's symptoms, but I'm not taking them currently - just had enough meds and those symptoms aren't so bad right now (I could be sorry later - but that's the risk you take I guess! :roll: ) I have other meds not directly related to the lupus and I take some supplements. So, 21 pills a day, plus some eye drops. Yuk....sounds dreadful when I put it all down. Bet you've got quite a list, too.

    My interest in technology happened by osmosis I think. (Living in close proximity to my husband all these years.) Sounds like you've had a lot of responsibility. I'm just a hobbiest and love the bells and whistles of new technology. I work for a non-profit. I was the program director for a long, long time. But when I got sick I couldn't do the 50 or 60 hours a week and the travel anymore, so they let me become a 'special project coordinator' and work 24 hours a week. Sometimes from home, God bless the Internet! I write grants, coordinate quality assurance...all that 'right brain' stuff. My husband is very 'left brain' (math, computer technology...and even music) so we're a good balance.

    We went through a similar rough patch with our oldest son. I'd like to tell you that he grew out of it, but the truth is he's 35 years old and is still struggling in many ways. Divorced, 'underemployed' and has a low self esteem problem that just keeps tripping him up. But, he's a great guy in a lot of ways. You can raise 'em, but you can't guarantee the outcome! To me, it sounds like you and your wife are doing all the right stuff. It's gotta' be tough to deal with a headstrong kid when you need to spend so much energy on your own well-being. Stress is no friend to those with lupus, so DO try to find a way to keep your stress level down (easier said than done, right?) It will only aggrevate your symptoms.

    Glad you're able to stay in touch. I'll keep you and your family in my prayers. Take care.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  6. #16
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    Default imuran....

    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! 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.

  7. #17
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    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
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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