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Thread: Imuran - help. questions. problems. what 2 do.

  1. #11
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    Todd, you've received some really great advice from Marycain. I can't add anything except to tell you that I'm thinking of you and praying for you and your family. I've been really sick with this disease, but I have never experienced what you're going through. I only know how disheartened I've felt when one symptom after another got me down. I understand - and I wish I could just make it go away for you.

    Teriod and Marcain are right, Todd. Panic and stress are not your friend - they will make the lupus worse. I hope you can find a way to bring your stress level down and take it one day (maybe one hour) at a time. Your docs will find the right combination of meds for you - just hang in there. It WILL make a difference.

    We're here for you - if it helps to post your feelings and vent, do it whenever you have the urge and the energy. There are so many on this board who will understand what you're going through - we're here to support you in whatever way we can. Just stay in touch - if you can't post yourself, maybe your wife can keep us up to date.

    We'll all be thinking of you.....

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

  2. #12
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    Default thank you....

    hi...

    t - i live near chicago....i've looked up the support group and will call them...there's a few around here...not overly close and not being able to drive makes it a bit of a challenge, but we'll see.

    thanks for the info on the drugs...i'll bring them up...elavating my feet does help alot...i cannot sit in a chair for very long without my heart rate going through the roof..then comes the dizziness etc...

    oh i did some stress release today and went out to see shrek the third with my youngest for a birthday party and some friends of mine..movie wasn't so hot, but i had an ok time - got out of the house and didn't think about anything for a little bit which was nice...

    thanks so much for your time and your words...at times i have felt so desperate its hard to explain...here I have MSA which is already terminal - and its LUPUS which is scaring the living crud out of me...its like being attacked by a vicious animal and not being able to defend yourself...in a month my blood work has gone all over the place -downhill speaking its insane....

    marycain - well howdy....sounds like you and i have alot in common..i am scared to death of cytox too...but maybe it would be easier for me - i do have odd reactions...i'm going to ask...i also read about this 4 mega dose thing so who knows...

    diabetes - i'm hoping its related to prednisone....if i work like you and get low enough then maybe all will fall back into place..i HATE the insulin thing - never knew how involved everything is....

    the combo --- do u have a life again? right now i don't and am wondering if i can get some back....can't do much at all...however i do have a few good hours in the day..usually in the am...and then late at night..sometimes...during the day - oh boy...not so good...

    i'm afraid stress isn't leaving me anytime soon...i'm working on it..i have to stop letting my teenage son get to me -- he's graduating in a few weeks and he's just such a raging mess...causing me all kinds of problems and un needed stress...i wish he would wise up...but not happening..

    anyway, i have to run...but good lord that you all for posting...i needed it bigtime...

    jody - oops almost forgot..see i'm getting tired and loose my train of thought..i have bad memory issues..lol....sigh...thanks as well....i'm going to work on the stress thing...and try and fight this harder...for awhile i was pretty down...sorta lost my fight i guess....but i am determined to not add congestive heart failure to my list of problems...so i am considering this high dose IV stuff - it scared me pretty bad at first because i guess they have to tell you all the worst case scenarios - which is death - lol....but maybe it would be good for me..not sure..since i seriously have odd reactions i scare most doc's...but since things are so tough maybe i should consider it more and them too...also talked to me about IVIG i think its called ...something about flushing out the immune system and then putting in a new one basically...synthetic too or something..its weird but they've talked to me about it...it was before lupus though..but since i have multiple autoimmune stuff and msa the idea was to curb it...don't know if it would still apply but think it might...however i unfortunately need the chemo....

    mary - can you go into more detail about the once a month thing...does this mean you are good or better for the rest of the month? i could definately do one day- no matter what happened i could not possibly get sicker than what imuran has done...think i've left a kidney on the bathroom floor one day....

    thank you thank you thank you....

    ps....when the dust settles should i be going on a anti-depressant? i feel like i need valium - which i know they won't give me for a long time...but i don't take anything and am starting to wonder if i would handle all this better with some medication..not sure, a few friends have asked me - i think because i have been so down and am not usually like that...

    take care all...and likewise my thoughts are with all of you during this struggle...

  3. #13
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    im glad you got to have a little time away from the stress, Pirates comes out next week, try it again, as far as teenagers go, i think even the good ones can be a pib sometimes, my 16yo has finally decided girls are the most important thing in the world right now, I dont know if its him spending so much time with the new girlfriend or not enough time with me and the family, but we got spend a little time workin on cars tonite and that seemed to settle things down alittle(he works,I snoopervise), i can tell that the prednisone affects my attitude towards him so i try and remain as calm and level headed as possible but he notices still, now if i can just get that dad gum phone pryed out of his ear things would be alright,

    as far as the valium, ive always found finding someone that understands and is willing to talk a much better alternitive than being sedated to a stupor, maybe a counselor or one of the support groups that you talked about, i know im going to start one next month, if you give them a call maybe they can help with a ride, other than that talk to your MD about antidepressants, see what he has to say, of course as always, keep your chin up Todd, and i messed up on my preds this weekend and double dosed, so now i am paying for and will be up and down all night if your still online
    Fair Oaks California

  4. #14
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    Default ter...

    hey...

    good to hear from you...you can pm anytime i'll send you my email...i'd post it here but think that might be a problem..anyone in this thread for that matter can do the same - no problem to me.

    i too can be up alot..was up until 5:00am one day this weekend...hate that...but i do have bad insomnia..i am just behind in email from not having a pc or internet for so long and my urgent issue was really this posting and this topic so unfortunately some emails i still haven't gotten to because i'm trying to become human again and at the same time get my pc set up i have yet to even put a firewall on this thing if that tells u anything about how urgent it has been for me to talk about all this. i'm a former IT guy and doing without a firewall is something i would never do..

    anyway, my son is the same way - got into a huge fight last night about his girlfriend and the phone....already had to disconnect his cell phone..now its the home phone...we don't allow talking on the phone after 10:00pm -- he's almost 18 and i know this is strict - but he doesn't follow rules - just breaks them...thinks they don't apply to him - and trying to teach him in the real world he has to follow rules...anyway, its a work in progress i guess.....i worry to about the relationship alot...

    i wish i had some words of wisdom for you and your son...don't have much...hold them closer is all i have to say i guess...my son did say that he didn't like us being so strict with him, yet he understood and said we are doing a good thing - which means in 'his' speak that he's glad we're strict with him because he can't control himself or set his own boundaries - the girl thing has consumed him and he doesn't know how to behave...so i talk to him alot about this as i don't want to be a grandparent among other things....if we weren't strict he would loose his darn mind -- girl whacko at the moment...it will be pass soon..at least that is what i tell myself...

    anyway - i have no idea about the anti-depressant thing....i have PTSD but haven't been on medication in a long time...however i have been super stressed out and a few of my doc's are concerned that i get some down time...i don't want to go on them that is for sure..and it would be situational - not perm -- if i did...i can't do anything until my heart issues get resolved anyway....most raise this and blood pressure for me...

    gotta run....off to the doc....talk to u soon....todd.

  5. #15
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    When I first started the cytoxan, I was in pretty serious multi-organ disease, off work and on dialysis, and I've gone from that to being back to work three and half days a week. It didn't happen all at once - when I first started it, I had to do the chemo cycle every two weeks for a couple of months. Like you, I have some strange reactions to a lot of medications, so for the first couple of rounds, my doctors premedicated me with high dose benadryl to reduce the risk of allergic reaction. By the end of the second month, my kidney function had improved to the point I didn't need dialysis, and at the end of three months, most of the inflammation around my heart had resolved. I've been on the cytoxan/solumedrol cocktail once a month since then, with occasional breaks if my white count gets too low. There is about a five day period every month when I feel really dragged down and exhausted, but it's still a major improvement for me over the imuran, when I felt like a had a bad case of flu every single day. But I am able to work and take care of the kids, so it's a fair trade off. I do have to watch my diet very carefully - there are certain foods I can't eat because they adversely affect my kidney function or my blood sugar. The solumedrol doesn't seem to affect my blood sugar as much as the oral prednisone, but I'm really careful to watch my glycemic index on foods anyway.

    If you get the chance to do IVIG, go for it. I've had it several times, along with plasmapheresis (a procedure where the blood is washed to remove antibodies). Unfortunately my insurance would only pay for it for certain conditions, like hyperviscosity syndrome and autoimmune hemolytic anemia, so I was only able to get it if I was having a crisis. It's not a permanent fix, but it helps a lot when you are having severe symptoms. It's very expensive, which is why most insurance companies restrict access to the procedure.

    The boys are wanting breakfast, so I need to sign off for a while, but I will try to post more info about IVIG later.

  6. #16
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    Default therapy....

    hi mary...wow. great information. we are a motly mix here that is for sure. my kidneys aren't as bad as yours at the moment..which i'm thankful for..I would have to check with medicare about the IVIG = under my old Blue Cross Plan it was covered, but i got shoved onto medicare once the 2 years were up for being disabled. I'll check on it..

    I'm still undecided what to do with treatment. I'm so frustrated with the doc at the moment - which is unlike me as I love this doctor - but I am not loving how i am feeling or what is going on...I've been off imuran for a week and again today having problems -- didn't throw up at all except for last monday -- doc today said its still in my system and to accept that. so fine...we'll be talking about stuff on friday...so i need to be ready for then....i like the once a month thing alot! lol. i'd even go for 4 days mega doses -- for days of h e double hockey sticks would be better than every day....

    i'm so happy for you that things have worked out and that you must be a very strong person to be working and taking care of kids AND being sick...that is alot...i know my kids take alot of energy and i think everyone knows how things are going with the teen - but my little guy -- he's a busy boy and has tons of friends and he's a sports nut so he's busy...i like him to spend time with friends..except now tonight its 10pm and he's doing homework which i don't like at all...thank the Lord this doesn't happen often..summer fever is starting to hit....

    anyway, i'll look forward to hearing more about ivig....i'm on the fence about the medicine part....cytoxin is much stronger...that worries me a bit...but you said you didn't have a ton of side effects as i remember it...what effects did you have....good and bad and how long did the good take to kick in.....

    at this point i originally joined the group with a question about loving prednisone....well not so loving it now...think i'd rather just suffer in pain...i can't do pain med's because they make me so nauseated...not sure however my heart is still a problem...and i don't know for sure if its prednisone or imuran....one of them is still causing me problems....doc was not happy and wants me into cardio -- but had that in the hospital and they are of the opinion that something else is causing it -- lupus and that needs to be under control....SIGH....i want to get on lower dose of prednisone and see what happens....

    ok...gotta run....take care....t

  7. #17
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    Hey, Todd. Just checking in. Hope you had a good day - or at least some good hours! School is winding down for your boys, and I bet they're driving you nuts - my sons always drove me nuts towards the end of the school year. But summer's with them were fun. Your little guy is at a good age - the teenager?...not so much! :lol: We had this conversation, I think....my oldest was (still is) a challenge. Gotta' love 'em, but you don't always have to like 'em.

    Glad to hear you like your doc. But, even good docs sometimes don't have good answers. I hate being in pain; getting tired; feeling weak - but I still do a lot. I know the meds are working (it was soooooo much worse before) but there doesn't seem to be a magic bullet. Maybe it's all a matter of degrees.

    Getting late for me - I'm fading. Hoping tomorrow's a good day for you.

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

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