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View Full Version : IMURAN - So far so good



laurid8967
02-08-2010, 07:30 AM
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

magistramarla
02-08-2010, 10:06 PM
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

laurid8967
02-09-2010, 01:14 PM
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

KATROACH1972
02-09-2010, 02:04 PM
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

mountaindreamer
02-09-2010, 05:19 PM
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.

laurid8967
02-09-2010, 05:21 PM
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

mountaindreamer
02-09-2010, 05:27 PM
hi lauri,

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

KATROACH1972
02-09-2010, 09:07 PM
Thank u sweetie. Let me know how u are doing too! hugs kathy
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

laurid8967
02-11-2010, 06:31 AM
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

justanangel
02-13-2010, 09:29 PM
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

laurid8967
02-14-2010, 06:09 AM
Helen -
Thank you SO much for the info....great advice and my doc said same thing the other day(after the post). Its just as important to me to hear from other patients as it is my docs. I mean, you guys are the ones taking the stuff, right? LOL. I am up to 50mg 3x per day - its been about 3 days now, and no stomach issues. I will say though, that I have a VERY strong stomach (the only thing that works in THIS bod), so I dont react to meds that badly and - THank You God - have not as yet had any problms with this. It sounds like you are feeling pretty well and Im hoping that only gets even better! Again, thank you for your input. I am really grateful
Lauri

Melly
02-14-2010, 03:31 PM
Hi, Helen! I take Imuran as well (not for Lupus, but for RA). I was up to 3 pills and about to increase to 4 when my labs came back and my WBC was zapped. I had to go back down to 1 pill and my WBC went back to normal. Of course one pill doesn't help control much and recently I was increased to 2. I'm hoping my bloodwork stays ok or at least semi-ok so I can continue with the med.
I read where you said the drug burned your mouth? And hands?? That is so strange! I've never experienced either myself. Have you had any episodes since then?
I'm glad to hear you're tolerating imuran well and I hope it not only continues, but also provides you plenty of relief! *hugs*

scubagramplit
02-14-2010, 07:44 PM
I am unfamiliar with Imuran, is it a chemotherapy drug also like Methotrexate? I ask just because my dr. told me that if I couldn't get off the prednisone that the next step would be chomo, I believe that he was talking about methotrexate. He already tried the cell cept but I had some bad reactions to that stuff.
'

Melly
02-14-2010, 09:56 PM
It is low-dose chemo, yes. If you do use methotrexate, make sure you ask for injections instead of the pills. The needles are small, the shot is quick and simple and you get to skip the stomach discomfort that most folks on the pill do not like so much. Taking it as a shot skips your innards.

laurid8967
02-15-2010, 07:00 AM
Hi Scub - Melly is right - yes a low-dose chemo, as is methotrexate. All of these - CellCept, cytoxan, Imuran, MTX - are immunosuppesnant drugs. Because lupus (any autoimmune disease) is almost like an overactive immune system (attacking HEALTHY cells vs. attacking antigens like viruses, colds, etc), these drugs SLOW down the immune system. The problem is they leave our immune systems sometimes unable to fight off REGULAR infections, colds, etc and leave us VERY susceptible to germs, etc. Its VERY important if on any of these meds to take precautions to not be around ppl with any type of infection as we are very vulnerable. Even the most simple cold can REALLY cause a problem, as we have no immune system (or a compromised one) to fight it. At any sign of infection (temperature, chills, fever ) we are to call a doctor IMMEDIATELY.
I know - all these meds have so many side effects/other implications....It is so important that researchers come up with some new meds for us SOON!! There has not been a new med approved for lupus in 52 years....pretty sad.
Hope you are all feeling welll!
Lauri
PS - Melly - Yes, I did get the mouth issue the first and second time, but NO PROBLEMS since. It was listed on the Precautios paper thats stapled to the prescription to wash your hands after using. THat p[aper was as long as a roll of toilet paper!!! :)LOL - Oh well, choices are limited for us at this point...Im always praying for new, less dangerous meds....Take care! And thanks for the post

scubagramplit
02-15-2010, 08:11 AM
Thanks Lauri and Cathy for the info. I guess one of the downers is that I am an instructor at Northwest Lineman College, there is always somebody with a cough or a sniffle, cold or flu. grrrrrrr:( Oh well, we can only do what we can do right?

jlindsay
03-05-2010, 10:25 PM
Hi Lauri,
Thanks for posting the information about the Imuran. I have been on 50 mg of Imuran for over a year now (along with different dosages of prednisone). I was finally weaned off of prednisone in December 2009. However, as you may remember, I have recently started another flare. So I was put on a prednisone starter pack (30 mg prednisone for 4 days, 20 mg of prednisone for two weeks). After having a follow up with my rheumy on Monday, my dosage was changed to 10 mg prednisone and he wants me to work up to 100 mg Imuran. Currently, I am on 75 mg Imuran. I don't seem to experience any side effects from the Imuran but I do from the prednisone. So I am glad my rheumy is weaning me off of prednisone fairly quickly. I am being cautious about upping my Imuran dosage too quckly. So how quick did you get up to 150 mg? Also, would you recommend that I take one 50mg pill in morning and one in evening? My rheumy said it was up to me if I take it all at once in morning or once in morning and once in evening. I never did well with Plaquenil so this drug has done wonders for my inflammation, pain, headaches, fatigue and platelet levels. Well, at least until the start of this recent flare:-)
Jina

laurid8967
03-12-2010, 06:05 AM
Oh gosh Jina
I missed this post - so sorry! I started on 150mg and have no problems. I started with 2 - 50mg in morning and 1 - 50mg at night. I was just upped, however to 200mg total (2 in AM, 2 in PM) still not too many side effects (some bloating, gas, uncomfy belly) but I absolutely take it with food. I am dwon to 25mg now on the prednisone. My doc is doing it VERY slowly as it can affect your adrenal gland if you taper down too fast (if youve been on it ofr a while). I am SO ANXIOUS to get off the damn prednisone!! However, I have not gained any weight from it this time, Im actually LOSING weight and doc says thats the Imuran.
Still no hairl loss or vomiting for me (thank you God) but - as I was recently started on Mestinon as well (for Myasthenia Gravis) which can cause - lets say - some bathroom issues, I have to REALLY make sure I eat, Im taking Pepto Bismol here and there, and Phazyme for gas. I get some pretty bad stomach cramps for a bout a half hour or so during the day, then it passes. Totally worth a half hour of discomfort to get me out of this flare.....Im officially on MONTH THREE with this flare...cant do much of anything....somedays, just brushing teeth and washing face put me in bed for hours....this flare is brutal. I miss the days of a couple swollen jioints and a couple rashes here and there!!
Anyway, hope this helps. Any question, feel free to ask or PM me honey...again sorry I missed this post <3
Lauri

Angel Oliver
03-12-2010, 11:18 AM
Just to say im thinking of you and glad the Imuran is helping but hope you better soon.

love
Amanda.xxxx

jlindsay
03-26-2010, 09:43 PM
Hi Lauri,
I am so sorry that this flare has been so tough for you. Hopefully, the change in Imuran dosage will kick in soon! I am now up to 100 mg Imuran and down to 5 mg prednisone. Like you, I am not gaining weight this time around on the prednisone or experiencing the round face and so far I am not experiencing any stomach issues from increasing my dosage of Imuran. However, I just had a CBC and Chem panel and my platelets look really good but I am concerned that I may be experiencing some kidney issues with the higher dose of Imuran (or maybe because of this new flare??). My labs from two weeks ago show my potassium levels are 3.4 and my Creatinine level is high and Creatinine clearance is low. I am considering calling my rheumy on Monday to find out what my chemistry labs for this morning say. When I did a chemistry lab in January everything was normal so this sudden change has me concerned. Have you noticed any change in your potassium or Creatinine levels since increasing your Imuran?
Jina