Imuran and etc.

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oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/13/2012 8:24 PM (GMT -6)   
Hi Everyone,
 
     I just got back from my rheumatology appointment and we have decided to up the Prednisone to 10 mg a day since my disease has been much more active lately. I had been doing so well and these past three weeks have been a serious challenge.  It's hard to keep from getting frustrated with all of this!!!!  My rheumatologist also decided to start me on Imuran, since the big motivator in my treatment is to wean me off the Prednisone (I have been on Prednisone off and on for a number of years), which has been very difficult for me.  I also take Plaquenil, which I have been on for sometime.  I tried Methotrexate, but got very sick on it and CellCept was a godsend until I developed serious neutropenia.  The next line of offense is Benlysta, which we are looking at as a viable option.  At this point I am willing to try it, if the insurance approval goes through.  I would love some input from all of you on both Imuran and Benlysta.  I realize that Benlysta is new and not too many people have been using it, but I am assuming that a number of you have either taken or tried Imuran.  I have been reading about both of these drugs on line, but I love the personal touch I receive from people traveling a similar road as I do.  Any tidbits and information would be extremely helpful.
 
Oreo (Laura)

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 4/14/2012 4:48 PM (GMT -6)   
Unfortunately I have not been on either up till this point. I just started Methotrexate Tuesday night. I was wondering how it made you sick? I'm having a hard time distinguishing Lupus symptoms versus side effects...although I have no appetite whatsoever and usually it's not that bad with just Lupus flaring. There are other things as well but I will wait till later to ramble lol My next option if this doesn't work is Benlysta as well so I'm interested in knowing about it too! I wish you all the best and hope someone responds and can give us both a heads up! Take care and God Bless.

-LB (Brittanee)
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 4/14/2012 8:05 PM (GMT -6)   
Laura,

I took imuran for 5 years and it helped to keep things under control. Some patients are allergic to it and cannot tolerate the drug which will be apparent immediately. Some, like me will tolerate it very well but eventually have a problem with blood count....low rbc, wbc, and platelets. Having said that, most patients tolerate imuran very well for long term use. It takes months, 6 months or more, until imuran is fully effective.

Benlysta has worked well for a couple of my friends but like all meds, the only way to know if it will work for you is after you try it. Hope you can find the right answer for you.

Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/14/2012 8:31 PM (GMT -6)   
Thanks for your input.  As to my issues with Methotrexate, I got severe nausea to the point that it was unbearable, even with the injectible form.
If I go the Benlysta route, I will certainly let people know how it goes.  I am amazed at how much better I feel with the increase in the Prednisone!!!  Too bad the drug is robbing my bones of their density.  I might stay on it forever if the negative side effects (long term) weren't so bad. 
 
Laura

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 4/18/2012 10:13 AM (GMT -6)   
Laura,

That's how I am with Prednisone! I feel great on high doses but it doesn't work for me on low doses and when I get low enough I start having withdrawals as well as adrenal insufficiency. It's like all 3 reactions at once. UGH. I have to go see an Endocrinologist to try and figure out a way to get me off of the steroids. If MTX doesn't work for me my rheumy also mentioned Benlysta so we will see what happens!

-Brittanee
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 3pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 4/18/2012 1:31 PM (GMT -6)   
I took Imuran for over a year and had no side effects. It wasnt working for my kidneys so we switched to something else. Now I just started back on it and I already feel a minor improvement in some areas. And no side effects so far :)
Amy
Lupus Moderater


dialysis from lupus nephritis

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/18/2012 7:38 PM (GMT -6)   
I went and had labs done on Monday, so I am just waiting to get those results before I start the Imuran.....something about an enzyme level. I have been feeling much better with the increased dose of Prednisone. It really does wonders for my overall physical health and emotional response. It's even made it much easier to finish my work day and not feel spent. I am hoping that as more of us are steered towards Benlysta that we can get some good information. I am always a litttle leery of being the guinea pig, but I do want to find something that can reduce my Prednisone use. My last bone density scan was not very good and I have a history of Osteoporosis in the maternal side of my family. It's been amazing to track my bone loss since I have been on the Steroids.

Laura

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 4/22/2012 6:44 AM (GMT -6)   
 
I am one of those with no tolerance on Imuran. I got serious sign effect, such as losing all my hair, extremely low WBC, low platelets, high fever, serious mouth ulcer, and I was hospitalized for ten days. Cellcept agrees with me and it's a miracle. I was finally able to wean off Pred after 20 years of taking them.
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