has anyone stopped imuran?

2111 Views 10 Replies 9 Participants Last post by Maia, Mar 23, 2009

helloos

Discussion Starter · Mar 21, 2009

Just wondering if anyone stopped imuran cold turkey and if any effects happened. I have been off it for 1 1/2 weeks now due to being sick and I am thinking I might try to see if I can stay off it. It is not something you need to ween off right? How long does it take for it to get out of your system?

Thanks.

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ROSJAC

· #2 · Mar 21, 2009

Hi, Yes I had to stop Imuran because it elevated my liver enzymes. I had been on it for several years and it seemed to help. I stopped cold turkey due to Rhumy's advice. Please check with your Doctor before stopping it completely. I now take Cellcept......wish I were still on Imuran(less side-effects) The 6 weeks between stopping Immuran and starting Cellcept,my fatique got much worse. Take care, Rosie

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nettyunicorn

· #3 · Mar 21, 2009

hi i to had to stop imuran coz of raised liver emzymes. i had not been on it long so i could right away!

sorry may not be much help!

nettyxx

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Lupo30

· #4 · Mar 21, 2009

I stopped it straightaway. I was only on it for 8 weeks though. It just made me so ill. Shame though, as it meant to be really effective. Hope everything works out for you. Take care.

Lupo30 xx

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Katharine

· #5 · Mar 21, 2009

Hello Paula,

I would err on the side of caution here and want your rheumy's opinion. Does he really think that stopping imuran would be a good idea?

Why I'm saying this is I know from your old posts that you are very reluctant in general to take meds and have a tendancy to let yourslef become far too ill flarewise before going to the doctor. I don't think any of us "likes" taking meds but, unfortunately we have to.

I know you HATE pred and one of the reasons for putting you on imuran was to stop the all too frequent flares you were having and also to avoid the need for pred and its side-effects.

I have no idea about whether it is a med to be tapered or not but I do truly believe that doing such things without the proper medical advice is dangerous and irresponsible towards ourselves.

If you read the information provided in this link:
http://my.clevelandclinic.org/drugs/imuran/hic_Imuran.aspx

you will see that

It is important that you take this medicine regularly as prescribed. Do not stop taking it and do not take more or less of the medicine than is prescribed.

It also mentions

Keep all appointments with your doctor and the laboratory. Your doctor might reduce or even stop Imuran when you are being treated for certain infections. This allows your body to effectively fight the infection.

Hope that helps,
Katharine

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Lily

· #6 · Mar 21, 2009

Hi Paula,

I'm surprised you are considering this after all you went through to get your Lupus under better control. I wouldn't do anything until you clear it with your doc.

Remember when you said:

But he said stop immuran until I get better. That is 150 mg dosing. Last time I dropped 50 mg and suffered severe pain etc. But I understand why to stop it for infection reasons.

Is your infection gone now?

love
Lily

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helloos

Discussion Starter · #7 · Mar 22, 2009

I am still sick and not back on the Imuran. My rhemo put some doubts in my head my last visit. He says have you gotten any better since you started coming here or are you the same? How the **** should I know? I cannot remember really. It is up and down. Some good days some bad. Then he says we are treating you for Lupus but negative ANA's. Well I had two positive but low positive Anas. I know that he saw with his eyes the other symptoms going on and so it weighed more towards my symptoms than the blood work. But he goes and says that to me and I am thinking what the heck? Is he doubting it? That makes me doubt it? Then I get sucked right back into saying, do I have something else? Not Lupus? Is it Lupus? I probably do this to myself but I am really starting to second guess him too with some things he says and does in the past.

So I think to myself, I am off Imuran right now, not better sick wise, so I am not willing to get back on as I am too sick still and cannot seem to kick this cold, so I think why not stay off it? See what the heck happens to my body and revisit the situation and know for sure if the Imuran helped or not. I just can't remember, did it help? The kidney doctors says "imuran is not a benign medication" and all these things stick in my heaad. You are so right that I am always hesistant to take medications and am really not a good patient.

I am useless and self destructive.

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lin

· #8 · Mar 22, 2009

paula its a hard one isnt it , i wouldnt tell you what to od, as i wodner sometimes my self, maybe with oyu the azathioprine isnt working and you need something different there are lots out there,

i stopped aza for a week whilst waiting to go on new drug, im now up to the 1000 twice a day plus down to 10mg prednisolne, do i feel wonderful NO

so i know where your comming from the only thing different with you and me i woulod let my consultant know what i was doing habve you?????/

take care and big hugs paula from Lin, this disease is horrible!!

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ROSJAC

· #9 · Mar 22, 2009

Paula, When I was dx with SLE 11 years ago I was put on Plaq. Took it for 1 year.I did not know enough about Lupus...I thought it just caused great fatique. So, like you, my Rhumy asked how are you feeling? I told him I am still very tired all the time and i did not think the Plaq. was helping. If I could go back and due it all over, I would have given the Plaq. much more time. Maybe, it would have helped to prevent the Lupus from going into my lungs. When I would be given a script, I would read the info. sheet, see the possible side-effects and it would deter me from wanting to take the meds. When I go back to my Rhumy in June, and he asked do you think the Cellcept is working, I am going to ask "you tell me!' What changes should I be seeing? Some of these meds. are scary, but I have learned the hard way, they are necessary. Please take care, Rosie
"
"

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onetay

· #10 · Mar 23, 2009

Paula,
I have not been on this med so I can't help you with this issue. I did want to wish you luck for whatever you decide to do. I hope you are feeling well and doing well.

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Maia

· #11 · Mar 23, 2009

(((Paula)))

I do not think your rheumy is doubting your diagnosis... he is just wondering if the treatment is helping and wanting to know if you are better with the medication. Since these medications do have side effects and risks... he is asking for your help to try to determine if you *feel* better since taking these medications.

At least, that is how I would choose to interpret his question if I was in your shoes.

That said, I have had moments where I have doubted my diagnosis as well even years after I was diagnosed with multiple high and very high ANA's plus many symptoms. It's very natural to doubt a diagnosis from time to time for various reasons - I think it's also natural to be hesitant about trying some of these medications.

None of this makes you useless and self-destructive - just a normal human being with thoughts, feelings and emotions. In order to be able to answer that question from the rheumy... you might want to start righting a number on the calendar for the pain for each day, and another number for overall rating for the day with a higher number being a bad day. Then you can look back and see if over the months there has been an improvement with a new treatment by taking an average or showing it to your doctor the next time he asks you this question.

I hope you can kick that cold to the curb soon...

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