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

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    Default Imuran - help. questions. problems. what 2 do.

    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.

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    Default a little help

    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
    Fair Oaks California

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    Default New to taking Imuran

    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.

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    Default thank you...yes it helps

    hi...

    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.

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    http://www.drugs.com/temazepam.html

    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
    Terry
    Fair Oaks California

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    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.

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    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.......

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

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    Default train wreck.in need of all the help i can get to b honest

    hi.

    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.

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    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,
    Fair Oaks California

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    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.

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