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Oluwa
09-08-2009, 06:41 AM
Imuran users...

What is your dose?

Any relief?

If any side effects what are they?

Just a quick info survey, as I have an appointment with my DR and I have been on Imuran 50mg..upped to 100, then decreased to 50 because I wasn't feeling better.

For me, the side dishes were, loose, slushy edema in ankles, puffed rice eye lids, extreme pace of a snail.. fatigue, malaise and hopelessness not even a Hersheys Plain could cure and stiffer than a day long chewed wad of Bazooka Bubble Gum...

Love and Hershey Plain Kisses...
Oluwa

BonusMom
09-08-2009, 08:27 AM
Sorry to say, Oluwa, that I've got no experience with Imuran, but am sending good wishes for better days ahead.

Angel Oliver
09-08-2009, 10:11 AM
Hi Oluwa,

Im not on it but hope you get many replies.Im here as the Bazooka Bubble gum made my mouth water as ive not had that for years.Oh the joys of bubble blowing and someone popping it in my hair :)
:offtopic:

But i do hope soon you will feel the benefits of this drug.

love
Amanda.xxxxx

mountaindreamer
09-09-2009, 04:30 PM
oh, oluwa,

what a delicious sounding list of side dishes.....yuk... you had me laughing with your list.

i am so sorry you are having bad effects....hope someone will be along who can help.

Oluwa
09-10-2009, 10:40 AM
No one came along...

Love,
O.

Lilyanne
09-10-2009, 01:26 PM
Hi Oluwa

I take take 200mg started on 50 and increase slowly, I felt realy rough (sick) all the time when I first started, this lasted a couple of months, but this did eventually settle, each time the dose was increased the sicknes returned but for shorter periods.

I do think that it has helped to calm symtoms and I don't think or haven't noticed any other problems

regards

karenboss
09-10-2009, 01:59 PM
Well at least you have your sense of humor still - don't let them take that away.

sorry I'm still no one with Imuran experiance

g'luck

mountaindreamer
09-10-2009, 02:11 PM
i am really surprised that there are not more members on Imuran....i thought it was more widely used....hmmm, learn something every day.

Monique89
09-16-2009, 06:56 PM
I started on Imuran today...
So far no side effects, but its been like 4 hours since i took my first tablet (25mg).
My doctor has started me on 25mg, with the intent to put it up to max 150mg so that i can come off the prednisone...
He also did a test called something like TPF or something which tests how likely you are to have side effects from Imuran, and mine came up as very low, which is good for me...
I will let you know more when i have been on it longer!!

camillelj
09-26-2009, 09:00 AM
I just started imuran... So I am curious myself. He just started me @ 50mg.
As for the side dishes... That is how I feel now so I am hoping it can't make me anyworse right

Bonita
09-27-2009, 12:44 PM
I was on imuran for almost a year and i thought it did okay except when my white and red blood counts crashed and he took me off of it. Now i am having trouble getting out of flares and the blood work showed a sed rate of 77 and a crp of 8.8 which he said is my dieases and now the insurance company has twice turned him down for cell.ceph so i am in limbo now. Hope this works for you bonita

nasalady
09-27-2009, 03:15 PM
I've been on Imuran 100 mg per day for a year now. I was started on it for my autoimmune hepatitis, along with 40 mg of prednisone per day. My hepatologist has slowly tapered me down on the pred...I'm now taking 7 mg. He's keeping the Imuran at the same level.

I don't really know if I have side effects from Imuran....I didn't notice any. The problem is I've had so much pain, plus neurological symptoms, plus you-name-it, I've-got-it type symptoms from my multiple diseases and disorders that I can't separate which symptom is caused by which autoimmune disease and/or medication!! :(

My rheumy is happy about the level of Imuran I'm on....he thinks it's keeping my RA under control, as well as a lot of my other autoimmune diseases.

I was surprised a few weeks ago when I spike a high level of anti-double-stranded DNA antibodies. That plus my malar rash persuaded my doc to start me on Plaquenil.

Also I should mention that I have a co-worker who's been on Imuran for 15 years with no problems. He has Crohn's disease.

Oluwa
09-27-2009, 07:58 PM
Prior to starting the Imuran...I was in pain, joint muscles....very fatigued, red pink malar...ya know the usual stuff. While dosing with it...I like solidified. Literally I couldn't bring my hand to my nose. Prior I had edema but this was an allergic reaction edema, that loose jello fluid on top of my feet and eyelids. I got really sick and I too thought it was Lupus flaring...wasn't. My fatigued ten-folded...I was a turd.

I took snaps of my legs...my doctor said she never had seen such a terrible reaction...

But you know that break in between when I stopped Imuran and switch to MTX I felt the best I had in two plus years...weird, eh?

I took Imuran for 6 weeks...now I am on MTX ..no reaction thus far..just a bit of nausea and headaches...but how I wish for that in between break of joy, energy..I almost felt normal...now I really know somewhat normal is indeed achievable...remission is in my future...

Thank you everyone for your words...for sharing..

Hugs..keep looking for your wellness.
Love,
Oluwa

oscarinfw
10-28-2009, 07:07 PM
I started Imuran (50 mg twice a day) about a year ago in an attempt to control facial blisters (cheeks, temple) which the dermatologist thought was bullous lupus. It was not confirmed by biopsy but a second dermatologist offered the same opinion. Initially, I was put on Prednisone for near-term relief because it takes time for Imuran's influence to have an effect. I was tapered off the Prednisone inside a month. I'm not aware of any substantial side effects although I have become a lazy bum (fatigue ?) and have had mild issues with diarrhea.

I'm still on the Imuran which has been effective in keeping the facial lesions "in check", there is still some itching which results in a bit of discoloration if I scratch too much.

I also have a diagnosis for psoriasis (confirmed by skin biopsy) with skin lesions all over my arms, legs, scalp, and trunk. The Imuran was the only drug which was successful in controlling the inflammation and I'm much better off now than I was prior to the Imuran. Most of the rashes are still visible but at least they've been "knocked flat". I had no idea about Imuran as a treatment for either psoriasis or lupus, but I'm glad it's been working.

A Rheumatologist has taken control of my care (which now includes plaquenil) and (tentatively?) agrees with a diagnosis which includes both lupus and psoriasis. The ANA has always been elevated and most recently, Anti-RNP antibodies were elevated suggestive of some kind of connective tissue disease. Not enough for an official lupus diagnosis given the lack of other symptoms but close enough to warrant the Imuran/plaquenil protocol.

cptnblah
12-15-2009, 08:37 AM
I take 3/day and it seems to be helping for now. I am starting to get common colds now. My wife had the h1n1 last year for like 3 weeks and she wanted me to sleep in another room so I would not get it. I told her no way and I did not even get a sniffle!!! My imune system must have been really jacked up!

Tempeth
12-15-2009, 07:11 PM
I have taken Imuran for about 3 years now. I currently take 50mg because we discovered that when we try and raise that level I do not metabolize the medication fast enough and get sick as a result. At this level I have been able to lower my Prednisone considerably and can only really list occasional diarrhea as a side effect...

cranbrycloud
01-18-2010, 02:49 AM
Well, here was my recent Imuran experience so you can all watch out and be on the alert. I was having a lot of bad flares, severe pleurisy, pericarditis, recurrent pneumonia, my heart was irregular, couldn't walk etc... I was on prednisone, plaq, Methotrexate for 2+ years prior so my Dr put me on Imuran. After 2 months on Imuran I was up to 150mg per day. I had been feeling sick, some vomiting, not eating, headaches. Then, one day the fevers began and continued for about a week and were escalating. The Dr said they should subside as I got used to the new higher dose. However, after 6 days my temp DROPPED to 95.1, my mom had to rush me ER, I couldn't walk, don't remember anything for 2 days. Temp went down to 93.4, and fluctuated between as low as that and as high as 104 for one more week before I stabalized. I spent 2 weeks in ICU, had to do all kinds of neuro tests and physical therapy. Certainly the worst medicine experience I have had ever.

Obviously, I am not on that med anymore. I am now on Cellcept for 6 weeks and counting. Very nervous something crazy will happen again. Hope this can help people to be aware and to not ignore symptoms. After all the years of living with Lupus you would think I'd know not to ignore my body like that but I let a Dr tell me I was wrong yet again.

Best wishes!

Bonita
01-18-2010, 04:46 PM
When i was first diagnosised i was on immuran and had no side affects at all i was on 100mg then 200 and i thought it helped till my blood counts were screwed up and my red and white counts got too low and he took me off of it. Now i am on prednisone 7 mg and 200 of plaquinel and 20 mg of methotrexate a week and i do not feel as well as when i was on the immuran bonita

Gia
01-29-2010, 05:31 PM
Hey, I am on Imuran, I've been for about four years now, when I first started taking it I felt that it really helped on my symptoms, I'm taking 100 mg a day, I do have some side effects, appetite loss and fatigue, but it's definitly better than what I used to feel like.

Oluwa
01-29-2010, 06:41 PM
Okay..I dumped the Imuran...I dumped the MTX..now I am on Arava. And I feel marvelous...after 4 years from a mild flare to a hard core dragged down hair ripping and out for the count flare. I wonder remission or controlled by drugs...either scenario, I must say it is the best I felt in years. Though not totally normal, normal but better than my Lupus normal which isn't my normal.

I am going to milk it for all its worth, but still respecting the distrustful one...Lupus. I don't respect him because he is kind, generous and respectful of me. I respect him, cause I've felt what he has done...and know what he is capable of...The Wrath of Lupuskhan.

I won't feed him want he wants, sugar, nicotine, sleepless nights, pills forgotten...inflaming foods or stress. I will abide by the rules and hopefully he will too and play fair..

Keep looking for your wellness everyone..
Hugs and love,
Me..Oluwa!

smile75
02-02-2010, 04:44 AM
I was on Imuran for 9 years -150mg to 200mg daily. I had very little side effects and definitely felt a lot better on it. I have been off it for 4 years. However I will be starting Imuran or cyxton this week as I have developed problems with my lungs over the past 6 months.