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Thread: IMURAN - So far so good

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    Default IMURAN - So far so good

    Hi everyone -
    Just giving an update on me and maybe my experience can help someone else in the future. Well, most of the tests are in and in does appear to be CNS Lupus and not anytype of TIA, stroke, etc. MRIs, CTS, etc show inflammation consistent with the lupus.
    OK - SO - I was prescribed Imuran and began taper of the prednisone. I am not yet at full dose (currently taking 2 50mg a day-needs to be 3xday) and I took my first pill on Friday night. I went down to 40 mg prednisone on THursday. I will say that I had some fear here - of course - its a toxic medication and - believe it or not - I actually said to my doc on Thursday "Are you sure I have lupus?" She tilted her head, smiled and said "Yes, Lauri, me and the team of doctors treating you are sure" OK - so there was a part of me that wanted the answer to be NO. I suppose thats normal, and having gone so long being UNdiagnosed would make any patient have a little stage-fright I guess.
    Anyway, as of yet, I have had no serious side effects...YEAH! I DEF take it with food, to prevent the stomach side effects, and so far it has worked. I did, however, burn my mouth and tongue because I did not rinse my mouth out well enough after taking it the first two doses. You MUST rinse your mouth and wash your hands! I rinsed with warm salt water and it was much better the next day.
    I also get some dizziness and a BIT of a headache (NOTHING like a lupus headache at ALL - completely bearable if I lie down for a half hour). But all in all - Ive been OK. In the meantime, the prednisone will continue to come down slowly (I hope), but it has really helped with all the swelling. I feel as if Im on the right track and I am SO GRATEFUL that things seem to be settling down.
    I am always praying for all of you here - that wellness comes and swallows you all up.
    Warm thoughts and gratitude always -
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi Lauri,
    I'm glad that the Imuran seems to be working for you. I have no knowledge of it at all, but it sounds like it might be even stronger medicine than the MTX that I take.
    Good luck, and gentle hugs,
    Marla

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    Marla - thank you for your reply and warm thoughts - it means alot. Well, what a difference a day makes!! Feel lousy today - but its not the medicine...I did too much yesterday (why do we do this!!) and Oh gosh, Im feeling it today. And, I know the answer to my own question - for me anyway - its that I get SO HAPPY to feel well that I cannot seem to stop myself from tying to do stuff...too much stuff. I was so happy tho - I made my first dinner for my family in a month and a half!!
    I am suffering for an ONSET (like it comes on FAST) of anxiety and REALLY intense depression in the afternoon into the night. I think its a mix of all the new meds, and my Provigil - which is an energy life saver most days) may be TOO much with the prednisone. I didnt take full dose of Provigil today and am resigning myself to doing very little. Bummer...oh well - only to get better....
    Hoping everyone is doing well....thanks again Marla, youre so sweet
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hi, I had cns lupus and got lesions, they used Cellcept, and that helped. Now lupus is attacking my kidneys! I am on Imuran 4 last 2 months now. If my next urine has protein and my ultrasounds wacked out I will have to get biopsy!YUCK! I know what u mean about Imuran i am still scared to take it, but what are u going to do? Not too many choices. hugs Kathy
    Sorry i'm not home pain! and don't leave message I am not calling u back!




    Lupus,Fibromyalgia,Hypertension, Sjogrens,Raynauds,

    Macular degeneration,Depression,Arthritis


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    hi lauri,

    i don't have any experience with Imuran either, i also take mtx - injection. So glad you were feeling better, but it is a bummer that you feel badly today. I hope tomorrow will be a good one for you.

    You are right, when we feel decent, it is so hard not to overdo things that day. Sometimes i have to make myself stop even though i have the energy to keep going.

    I know that the medication is scary, it is for me too.
    Phyllis

    share a smile today

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    Thanks Kathy - and youre right...what else are we to do? This time last year I had continued blood in the urine with no infection. Then I had protein as well as blood and blood cells and casts. Sent to urologist first, said it was kidney. First thing ordered was a 24 urine test and what do you know? No blood anymore and no protein. They had started me on prednisone so that took care of it, or it went away on its own. If the 24 hr test came back positive, biopsy and Cellcept were next, but didnt end up needing it.
    But the kidney biopsy, though it is invasive - its considered minimaly so and can actually be done outpatient, or maybe one night in the hospital. Not that it is somethng you want done, of course, but they have the benefit of seeing your cells under a microscope - and they can really see disease activity VERY accurately that way. Hope you find answers without having to go thru anything painful...
    Take care and thank you again
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    hi lauri,

    thanks for the explanatio about the biopsy.....i too am looking at having a kidney biopsy, so any information is appreciated.
    Phyllis

    share a smile today

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    Thank u sweetie. Let me know how u are doing too! hugs kathy
    Quote Originally Posted by laurid8967 View Post
    Thanks Kathy - and youre right...what else are we to do? This time last year I had continued blood in the urine with no infection. Then I had protein as well as blood and blood cells and casts. Sent to urologist first, said it was kidney. First thing ordered was a 24 urine test and what do you know? No blood anymore and no protein. They had started me on prednisone so that took care of it, or it went away on its own. If the 24 hr test came back positive, biopsy and Cellcept were next, but didnt end up needing it.
    But the kidney biopsy, though it is invasive - its considered minimaly so and can actually be done outpatient, or maybe one night in the hospital. Not that it is somethng you want done, of course, but they have the benefit of seeing your cells under a microscope - and they can really see disease activity VERY accurately that way. Hope you find answers without having to go thru anything painful...
    Take care and thank you again
    Lauri
    Sorry i'm not home pain! and don't leave message I am not calling u back!




    Lupus,Fibromyalgia,Hypertension, Sjogrens,Raynauds,

    Macular degeneration,Depression,Arthritis


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    Youre both very welcome - Ive been around here a long time (with some big breaks inbetween, sadly, due to no computer) but have learned so much here. I truly dont know where I would have been without this site and the wonderful, INCREDIBLY informative members. I hope I can do the same for others.
    I do know that for those who are still UNDx - or somewhat Dx (and all THAT baloney), the kidney biopsy can be a DEFINITIVE diagnostic tool. Lupus "cells" can be CLEARLY seen under a microscope....no arguing after that! Here is what is said in The Lupus Book, By Daniel Wallace (I think I have the old one tho - just an FYI)

    "When lupus affects the kidney, it makes sense for a rheumatologist like me to seek consultation from a kidney specialist (nephrologist) to obtain a renal biopsy. (It) is recommended if there is abnormal urine sediment (e.g.cast, hematuria) and more than 500mg of protein in a 24-hr urine specimen. Renal biopsies have been performed for three reasons: (1) to confirm the Dx of lupus nephritis as opposed to another disease; (2) to determine if the kidney tissue is inflamed, scarred, or both; and (3) to evaluate treatment" The Lupus Book; Daniel Wallace - Chapter Lupus in the Kidney and Urinary Tract p. 142-143.

    He then goes on to describe the different methods used in the lab, and talks about Worlk Heath Org system of six differnt Class patterns of disease, etc. This book has been very informative to me, however, as I said, it is a bit old and some of the info MAY be outdated.
    Hope this helps, and still hoping that no one has to go through anything painful ON TOP of what we deal with daily....Hope you are all feeling well - physically and emotionally.
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Hello
    I haven't been around much lately, been moving across the country etc. Imuran takes 6-8 weeks to build up in your system, I waited till 8 weeks before dropping my steriods, and then very slowly. I went from 8mg to 7mg over 1 month duration, now the specialist has me going even slower at a drop of 0.5mg of steriods each month. I have been on imuran now since October 2009 with initially no side effects. I was on 2 x 50mg per day, then in January, the specialist asked me to go up another 50mg per day. After a week of going up,I got severe stomach pains, and gastric, some nausea, so I went back down to half that (eg 25mg not 50mg whole pill. That was around 2 weeks ago now, l still have a little bit of joint pain which is the worst part of my lupus, apart from the pnuemonia I get also. I will try and go up again in the next few weeks.

    But remember it takes time to build up, maybe you shouldn't be going down on steriods just yet.

    Love Helen

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    laurid8967 (02-14-2010)

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