Imuran and etc.

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)

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

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

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