View Full Version : Imuran - help. questions. problems. what 2 do.

05-05-2007, 07:44 PM
Hi everyone:

Sigh - I've been on Imuran all week and have the following questions or comments. LOL - Questions first:

1. What time of day to take this medication?
I was taking this in the morning, but that didn't seem to be working.

2. Does this medication cause anyone to have insomnia?
I'm on high dose of Prednisone now too so it may be this, not sure.

3. Ok, when exactly does the feeling like crap feeling go away?

4. Taste in mouth - on the tongue specifically? Suck on candy to try and cover this up.

Reaction -

I've vomitted on this- but am doing ok now...just nauseated...bad cramps and diahhrea...its my first week so not sure.....just been tired....but can't sleep and wondering what good this medication is doing? My heart is is dramatically lower from 167 resting to 72...so I guess this is a good thing...not sure if my kidney's are doing any better though - still peeing all the time...dunno...

Anyway, if anyone wants to share their experience I'd appreciate it.....

Thanks Todd.

05-05-2007, 08:13 PM
I cant help with the immuran, as ive not taken it, but the prednisone will cause insomnia, i only take my prednizone in the mornings and take a sleeping pill at night, this works pretty well for me, also do they have you on a diuretic such as lasix, this would explain the constant bladder??? if so you might have the doctors try lowering your dose and/or talk to them about sulfides and lupus

as for the taste in the mouth i get that to, dont know which drug is causing it, i conquer with sweets too :icecream: :icecream:

some days are better than others

05-06-2007, 04:05 PM
I take Imuran twice a day. I started on 100 mg per day. 50 in the am and 50 in the pm. After 6 weeks I got blood work and when it came back good it was doubled to 100 in the am and 100 in the pm. To avoid stomach upset I take it with food. I still feel like crap and did not notice much of a difference with the increased dosage but I did feel a little better after the 1st 6 weeks. My doc said I needed it for 3 months to get the full effect. I go back May 17th to see how I am feeling. I already had sleeping problems and the Imuran did not affect that. I take pain meds before I go to sleep and alternate Unisom with Ambien since Ambien makes me nauseated after taking it 2 or 3 days in a row. It did not affect my taste. Hope this helps.

05-08-2007, 11:48 PM

sorry i lost internet connection..and pc for a good day and a half...likely to down again tomorrow due to recent switch..SIGH...I hate being without internet as i don't like tv too much...

both comments helped alot - i do hope others with experience pop in too...so curious about this medication and getting off prednisone..

i will take the advice probably and wait it out and see what happens..haven't noticed any big change from it though...still feel awlful sometimes.was sick again yesterday - couldn't even lift my head without feeling nauseous...

honestly i feel like a train wreck most of the time...i can't really do anything and my heart is becoming a bigger and bigger concern...i don't know what is going to happen...i know they want to double this imuran dose but i'm not keen on that at the moment...and prednisone is making me gain the weight i lost from being so sick....its just a rollercoaster...i don't want to complain...but so much is going on in my life...i need that old calgon commercial for a break...tomorrow i meet with a grief counselor about my 9 year old which makes me so sad....and yet i have to be strong....little bugger even commented about my hair loss...lol, gotta love kids...

i thank you for your comments though they were very helpful and calming for me and i was excited to read them...it really does help alot...more than you know as i have no one who understands...they do their best but unless your sick you just don't get it -- mine case is a bit more complicated because of msa and being terminally ill which i get...but still you know what i mean...if you say your fatigued its shrugged off like get over it or something -- even one of my doc's had the guts to say i've been complaining about that for a long time - but i noticed a huge shift in the fatigue towards the worse..now they are paying attention i think because of my heart but should have listened to me in the first place....grrr...

thanks again ....and hugs back to you both in your own struggles which i know cannot be easy.....todd.

05-09-2007, 05:32 AM

this is what the dr gave me for sleep, i dont realize any side effects except whin i take with pain meds i get some strange strange dreams, not that i can remember them anyway, good luck with your sons, i could not imagine having anyone of the diseases as a kid growing up, but even worse would be having to try and raise kids, not only do they not understand for the most part, but keeping your stress level down at the same time must be a great feat. i too have a teenager with girl aspirations, he's a good kid, sometimes its hard to keep my disease from interfering with his child hood,
keep your head up buddy

05-09-2007, 05:37 AM
Adding a B-complex supplement may help some with the nausea. Ginger is also a natural way to help nausea: you can find ginger tea, candied ginger, and ginger capsules at most natural food stores. You can also try the seaband wrist bracelets that use accupressure - they are for motion sickness but can also help medication nausea. Sour things like lemons, dill pickles, or olives can sometime help - but be careful of salt content if you are retaining fluid. Eating small meals or snacks frequently, rather than three big meals, may be easier on your stomach. Foods with strong aromas can trigger nausea, so you might want to stick with blander, "safe" foods for a while - rice, toast, baked potatoes, etc. You should also talk to your doctors about the nausea - I know you don't like adding more medications, but a prescriptrion antinausea medicine like Zofran can make a big difference in your ability to tolerate the Imuran.

Unfortunately, the flu like feeling and fatigue are pretty common with Imuran, and probably made worse in your case by the heart problems and MSA. Have you had an echocardiogram done? Do you know what your ejection fraction is? Medication to improve your heart function might help your fatigue.

05-11-2007, 05:28 AM
I've never really understood when to take some of my meds, so I hear you. I've been fortunate not to have the stomach problems so many have had with Imuran. Other meds have made me sick, though, and a prescription anti-nausea really saved me. I just can't tolerate that kind of thing for very long. I hope some of ideas Marycain gave you will help. I'm thinking of you.......


05-20-2007, 12:26 AM

holy cow...i have been in the hospital...i wish i could flag this post everywhere because i feel in such need of help and so alone and so uneducated as what in the heck is going on...

i now have diabetes...bigtime..on insulin everytime i eat, so 3-5 times a day..trying to get used to the needle thing but i'm so overwelmed..its all so fast i don't have anything to dispose of the needles..

heart- well lupus is a pain in the butt..this damn disease i swear to god is trying to just flat out kill me...what is the deal?

lung - oh yeah, problems here too...some restricive muscle problem...might be another disease..mythansia gravis or something..have no clue....just having lots of problems breathing...

liver -- while in the hospital this wasn't a major concern...they are checking now that i've been out for about 5 days...who know's..

i've gotten sicker each day i've been out of the hospital...so i'm officially starting to get worried about this lupus stuff...

chemo - i went off this while in the hospital hoping and praying this was causing my problems..appears not to be the case....so i'm in a jam...i hate imuran....eyes rolling...so many side effects for me..

any alternative to imuran on the chemo side....????????????

is this normal? what is the deal with 3 organs being attacked at the same time -- who does this happen to besides lucky me...????????

i need help bigtime to be honest...why be humble now i am in trouble...i feel really bad...and alone and not knowing what to do....

prednisone...yeah well not liking this med to much at the moment...its working but i have offically swollen up like a puffer fish...usually goes away though...

however - they are talking about putting me back in the hospital and going on 1gram of prednisone and some super high dosage of chemo..which makes me want to look for the nearest bridge...chemo felt like it was killing me and they want to put on a high dose...i pray someone has had this happen to them and has a suggestion otherwise i think i need valium...

if i don't respond its because i'm in the hospital again as info...though i'll ask my wife to read...cuz i'm worried about everything....i don't understand this....

i apologize, i'm so tired i can barely log on...so much is happening its a bit too much...so if i'm asking something that's already been answered sorry...i'm just hoping that all my friends out there can help...i'm at a loss..

someone please tell me this has happened to u...heck, 1gram of prednisone pretty much scares even me to death..not to mention that i'd have to stay in the flipping hospital for this IV treatment along with the IV chemo... ( insert a good scream here ) ......

thanks for listening...gotta run...todd.

05-20-2007, 05:50 AM
yes ive been in the hospital swollen like a puffer fisher, gained 50lbs almost overnight, Hang in there man, they will get it worked out, stress is a major source of flares and it sounds like your in one right now, the weight gain is probally from the pred and can be controled by lasix or butenamide which are water pills, they check your liver to make sure the meds they give are not causing an allergy or other problems, hospitals are a very stressful place, make sure the nurses give you the proper meds other than that try and take easy, watch some tv, read a book,

what part of the country are you in??
keep talkin topeople here ill be in and out all day, try and think about something you really want to do or try when your better
I was told to keep my legs elevated when i had all the water gain

i know its very tough Todd, but keep your chin up,

05-20-2007, 06:39 AM
First, go ahead and take a deep breath, then have a good scream or a cry and let some of the stress out. You are overwhelmed, and with reason, but as Teriod said, this much stress will make your condition worse.

The diabetes may be a result of the prednisone - it happens to me every time my dose goes above a certain level, and my blood sugar goes back to normal ranges when my prednisone dose is lowered. So it is possible that the diabetes is a medication side effect and not the result of the MSA or the lupus. Has someone showed you how to test your blood glucose with a monitor? If you are on insulin, it's important to test often before you inject your insulin. The newer monitors that don't need to be coded, and allow you to test on your arm instead of your fingertip, are less painful than the old-style monitors most hospitals have. Testing is necessary because otherwise you risk sending your blood sugar too low. You should also make sure that you have glucose tabs or gel on hand in case you do have an episode of hypoglycemia. Have your doctor or your diabetes educator talk to your wife and other family members about how to respond if you experience an episode of either extremely high or extremely low blood sugar, because either can leave you disoriented and unable to treat yourself. But with testing and insulin, hopefully your blood sugar will stay under tight control.

Unfortunately, lupus is one of those sneaky diseases that goes after a weak area in your body if it finds one. And with the MSA, you are especially vulnerable. I have pretty severe organ involvement, from the lupus and scleroderma, and I know the idea of high dose prednisone and chemo is scary, but it can be a lifesaving combination. It was for me, I was in kidney failure and needed dialysis. I've been doing IV Solumedrol and IV Cytoxan once a month for a long time, and it's not nearly as awful as you may be expecting. I had terible problems with both Imuran and Plaquenil, so I was scared to death of cytoxan, but I actually had a lot fewer side effects from it than from either of the so-called "milder drugs". And it may be the same for you.

The high dose IV steroids make me feel flushed going in, and it gives me a "hyped" feeling that lasts for about four hours - jittery and nervous like I've drunk too much coffee. After that, I don't really notice many effects from it, other than I have more stamina and less joint pain afterward. With the cytoxan, the nurses run in a lot of IV fluids first, then IV drugs to prevent nausea, then a drug called Mesna to protect your bladder from the effects of the cytoxan. Then the cytoxan is run in over a couple of hours, you may feel some tingling or burning as it first goes in, but that goes away. After the cytoxan, more IV fluids. So it can take the better part of a morning to get the whole treatment. The newer antinausea drugs like Zofran and Kytril are really good at preventing nausea, and the doctors will probably keep you on them for a couple of days afterward. You may feel really tired the day after the infusions, and want to sleep a lot. Usually about a week after the treatment is when I feel worst, I am really tired and draggy for a couple of days. My mouth also gets sore and raw feeling, so I have to use the Miracle Mouthwash and be really carefully about spicy or hot foods. But overall, I feel a lot better on the cytoxan/prednisone combo than I ever did on Imuran, so I'm praying it will be the same for you. Please keep up your hope than the lupus can be managed or at least improved with the right combination of meds.

05-20-2007, 08:13 PM
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.....


05-20-2007, 10:09 PM

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...

05-21-2007, 12:31 AM
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

05-21-2007, 07:12 AM

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.

05-21-2007, 07:17 AM
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.

05-21-2007, 08:21 PM
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

05-22-2007, 08:50 PM
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.