Alzthioprine "Imuran" - Need your input

[ami42]

Hi Everyone, I hope I can pick your brain & expertise on this. Need some input from you....my doctor just put my on 150mg of Alzathioprine (Imuran) in the hope to try to get my SLE-Lupus more manageable. I started it last week & now appear to be headed into a flare.

My hair loss has tripled the last couple of days (which is very distressing), a not very lovely scaley facial rash down my cheeks & across chin, muscle/body ache & pain has increased to the point I can barely move, mouth sores, extrenely tired beyond my normal fatigue & this morning I threw up 30 minutes after taking the morning dose. (And unforuately there was blood within it). I'm waking up in the middle of the night horribly stiff & in pain - unable to get out of bed. Ditto in the mornings. Headache w/eye pain. I haven't felt this bad for a few months.

Are these symptoms that will pass? IE it gets worse before it gets better?

What is your experience taking Alzathioprine? How has it helped you?

I'm still on 30mg of Prednisone a day - so I've got the whole moon face & increased fat stores to add on top of this. The hope is/was to get me off of the steriods if this drug can help.

Anything you can tell me from your experience would be greatly appreciated.
Thanks,
Ami style_emoticons/<#EMO_DIR#>/Thanx.gif

[Clare.T]

Hello ami

I'm not a health care professional but if this was happening to me I would stop taking it and call my doctor ASAP. It does sound like a bad reaction to the Imuran, perhaps with a flare on top of it.

I would say that 150mgs is a rather high starting dose. This drug is usually started low, very gradually working up to reduce the chance of unpleasant side effects that put people of taking it.

I have no idea if it usual to stop it then start it again at very low doses when there's been such a severe initial reaction but of course your doctor will know.

I read your previous posts and see that the Plaquenil had to be stopped I wonder if Quinacrine was ever considered as an alternative ? This is chemically different from the chloroquines and doesn't affect the eyes. Unfortunately it might not be reimbursed because it has it be made up into pills by a compounding pharmacy. It isn't wildly expensive as medicines go, but if money is tight $100+ a month might be prohibitive. Some insurance companies respond favourably to a request for approval.

If you have only been taking it for a week I suppose it's unlikely that the skin rash has been caused by increased photosensitivity from the drug but if you have been in the sun a lot the past few weeks maybe photosensitivity has triggered some sort of lupus skin trouble and that might account for a flare on top of the Imuran effects..


What did your doctor tell you about blood tests for Imuran invisible side effects ?

Please call your doctor ASAP.

Good Luck

Clare

[hazel595]

hi Ami

I am so sorry to hear that you are in such a bad flare.......no two people react or have exactly the same things happen to them whilst on Azathiorine and having a lupus flare.

All I can do is tell you what happened to me and then you have to decide for yourself.

I had cyclophoshamide in March 2002 and after the 3 month iv course finished I started on Azath. By the October of that year I was on my max dose (which is weight related) of 150mgs. I was already flaring and losing hair, with bad muscle and joint pains and unable to barely move (sounds like you are in a similar way) which is why the dose kept increasing. In late October I had a flu vaccine and a day after the vaccine I became much worse and started vomiting my GP and upped the pred to 40mgs which didn't really help all that much. I managed to hang on till the following visit to the lupus clinic in London (at this time I didn't have a local Rheumie) but spent almost all the time in bed or used my wheelchair if I felt well enough.

In Feb 2003 they admitted me from the Lupus clinic into hospital, took me off Azath and started me on another 3 month IV course of cyclophosphanmide (low dose chemo). When it finished I started on Methotrexate on a low dose building up to the dose I am on now which is 20mg dose once a week. After a weeks weeks of being on 7?mg (th starting dose) I caught a chest infection and was rushed into my local hospital where I had another relapse of Transverse myelitis as well as the lupus flare.

I am also on warfarin as I have APS and with all the anitbiotics for the chest infection and Methly Pred, mu INR shot up to 9.8 so they gave me a VIT K shot and stopped my warfarin for two nights. I had a stroke the following day.

That was just over 3 years ago now and I am still on the methotrexate which fortunately has helped me as I know that not everyone is helped with metho.

I hope I have helped you to decide whether to wait and see if itgets any better and works or see your Rheumie ASAP. Maybe you should consider seeing your rhemie as soon as you can anyway. Ami.......don't stop any medication without the supervision of your rheumie.

Sending hugs and best wishes to you Ami as I know how c**p you must be feeling at the moment.

xxxxhazel

[chantal]

Hi style_emoticons/<#EMO_DIR#>/biggrin.gif I was on it for a few years and i didnt get any side effects at all, thou i did have to be lowered a few times because of blood count, i think u should contact ur doctor right away

[Lily]

Hi Ami,

I'm in agreeance that you should ring your Rheumy or get an appointment if you could get one reasonably quickly?

150mg is a BIG starting dose and many people have been put off because some doc bunged them straight onto that dosage style_emoticons/<#EMO_DIR#>/scaredy.gif I absolutely LOVE the stuff, but my doc took it slow and I would imagine you have some leeway, already being on the Prednisone too.

Whether all this is due toAzathioprine (Imuran) hmmmmmm?? either that or you are flaring or a combo of the two things. It is not something we can assess , but your doc should be able to sort it out style_emoticons/<#EMO_DIR#>/smile.gif

Azathioprine can make you a little (more) tired at first, but for me that faded as my body got used to it, or you can take it at night. Did your doctor instruct you to split the dosage? many take 50mg after each meal, or like me I take 75mg in am and 75mg pm. It really doesnt matter if you take it all at once if you tolerate it ok, or you split dosages up during the day my doc said. What matters is tolerating it and I found splitting the dose squashed any nausea. I started on 50mg and worked my way up to 150mg.

For me its been a great drug, it's calmed my kidneys down and has helped control my CNS Vasculitis style_emoticons/<#EMO_DIR#>/goodvibes.gif I'm in a much better place because of it style_emoticons/<#EMO_DIR#>/smile.gif Hopefully you can tolerate it, or if not then you can try another drug to help reduce your prednisone dosage.

style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

love
Lily

[AmandaB]

Hi there,

I started on this about 8 weeks or so ago. In the first week I thuoght I was heading into a flare - I'd just had a double knee op and thought this had triggered it off. I couldn't sit up in bed let alone get out and get dressed! It was awful but after a couple of days of complete bed rest I felt better.

I started on 75mgs, then went up to 125mg and I'm now on 150mgs.

I am now felling better than I have in months and have been able to reduce my steroids to 10mg from 15mg.

Hope this helps?

Amanda

[crm1209]

I started at 75 and felt like I'd been hit by a ton of bricks. I was very fatigued, felt achey and generally unwell (like a long case of the flu) and began losing hair (it was thinner for a few months afterward). I also had nausea, but it was mild and transient.

I persisted for a couple of weeks and those symptoms passed. Ultimately, I couldn't tolerate the drug (it affected my liver) so we switched to a related drug (6-mp) which I've been on for 6 months now. I'm happy to say it's helping! I'm not well, but my symptoms are not as severe and I have more "good" days now than I have had in a long time.

I agree with the others -- for all the reasons they gave -- that you should let your doctor know about the symptoms you are having.

I wish you luck,

Renee

[ami42]

You guys are awesome - thank you so much for the quick replies. I will definitely call my Rheum this morning & see if I can get in today or at least talk to him about these symptoms - as I really don't think I can or even want to attempt another long bad day like yesterday.

Initially I too was a bit suprised about the original dosage of 150mg. But, darn it I just figured he knew what he was doing but, I should of asked about it. Or at least been more vocal with the questions.

Thank you everyone who wrote and told me about your experiences on this - it did help to know tremendously. I know we all tolerate things differently but, now I have to wonder if building up to 150mg might have been a bit more helpful.

The Dr's office doesn't open for a few more hours but, I'll definitely keep everyone posted on what happens after that.

Luv,
Ami
style_emoticons/<#EMO_DIR#>/goodvibes.gif

[pebblesyowi]

hey sorry u not feelin so well. I can only tell u from my personal experience like clare said they started me on a low dose and now i'n 100 mg but i started on 50 and it took a month to get to 100mg. It has made my hair grow back and eyebrows and help maintain my lupus to a degree. i am also on pred but went from 40 mg to now 20 mg in a month also and still takin plaquinil. If there is any blood comin from anywhere i would defeintly call my dr cause it not a good sign and it could be tarin up u're stomach and u would have another problem to add on. i know for me its really made my coloits act up so had to take 3 additional meds to control that but can't come off the meds for lupus cause that would make things worse. i think its just matter of finding the right combination for you.

i feel sorry that u have to suffer while tryin to find it cause this is one of my big issues too. but u're not the first i heard say that the imuran didn't treat them right.

style_emoticons/<#EMO_DIR#>/hugbetter.gif hope u feel better
style_emoticons/<#EMO_DIR#>/foryou.gif

pebbles

[hazel595]

Hi Ami
Hope you were able to get an appointment to see your rheumie.....when you see him/her please discuss the possibility of either stopping Imuran or starting again on a much lower dose.

I forgot to mention in my last post that I started in the June after chemo on 25mg daily and it took another 5 months to be on 150mgs which I give a good go as I was on that dose till the folowing February.

It doesn't work for everyone but from the other posts it sound like it has worked wonders for others....I wish you luck and send big cyber hugs xxxxxxxxxx style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif hazel

[lisade]

Hi, I agree with the other post. I was on Imuran for several months and did not have any results, however it has helped many people here.

I started on 25mg and worked my way up to 200mg. My rheumy said it should be started low and as you tolerate it up the dosage. It did cause some nausea and vomiting for me and weightloss, but these sypmptoms were manageable with Zofran.

150mg is a large starting dose and could be why you are feeling so poorly. It also sounds as if you are going into a flare as well.

Please contact your doc for a follow up.

Good luck, thoughts are with you.