The day I’ve been fearing for the past four years has come. My doctor called yesterday to tell me my liver values are too high and to stop Imuran immediately. I was tapering off of prednisone for a flare and was at 5 mg. but now he’s bumped me up to 20 mg. for ten days, then 10 mg. until I see him in three weeks. I’m really worried. Does a break from Imuran usually result in being able to go back on it eventually? What’s the usual pattern? I would really appreciate hearing from those of you who have been down this road. I don’t want to be on prednisone but I’m hoping it will keep me from crashing. And I realize now I’m going to be on it a long time since it always takes about three months for immunosuppressants to kick in for me. And then the tapering process takes forever! Thank you so much for any info/advice you can offer.
HANG IN THERE, THE DOC. HAS TO STOP IT CAUSE LIVER FUNCTIONS RISING IS DANGEROUS & HAS TO BE ADDRESSED IMMEDIATLEY…UNFORT. THESE MEDS. DO THAT…TAKE THE STEROIDS, THEY SHOULD HELP EASE THE TRANSITION, AND PRAY IT ALL WORKS OUT & THEY FIND SOMETHING DIFF. TO HELP…THERE ARE OTHER ALTERNATIVES OUT THERE, AND THAT IS Y THANK GOD THEY PERFORM REG. BLOOD WORK TO CHK FOR THESE THINGS…BETTER SAFE THAN SORRY, UR BODY MAY NOT LIKE IT, AND THIS IS IT’S WAY TO LET U KNOW…I KNOW U R SCARED, JUST GO WITH THE FLOW & STAY POSITIVE, OK! DO NOT PANIC…KEEP US POSTED! PRAYING FOR YA! SUZIE :0)
I have never been down that road, but my doctor as well is trying to taper me off of the predisone, and I hope things go very well for you too. We will always be fighters as long as we have lupus because the disease itself is so unpredictable, as far as what will happen next to our bodies. But GOD knows all and can take care of all things.
I will keep you in my prayers, and I know that God will take of the rest. Remember your Lupus family loves you!!!
Suzy and Fighter, thank you for your responses. Your support is very much appreciated. I’m curious to know how others have coped with this situation and what the outcome was, that is, did they have to start a different medication or could they go back to their original, etc.
my doctor had tried to tapper me off before, but I experienced a low blood count and had to be given 2 pints of blood, so they went back up to 20mg daily and started the tappering process again, and so far so good, I will know more on the 20th of this month. Prayer fixes everything and that is what we as a family will do. God BLess
Wow, I didn’t know that could happen. The doctor did say my white count was low so I guess I won’t be surprised if I have the same result, though I hope not. But it’s good to know about this ahead of time so I won’t worry about it if it comes to pass. Thank you!
I am always glad to help family in anyway that I can. Keep God first and have a great day. (hugs)
The same to you and I wish for you a good result on the 20th. P.S. It’s 2:40 a.m. and this 20 mg. of prednisone is keeping me wide awake! Grrrr
I haven't been down that road either, but I 'll go there with you now...to cheer you on and help carry the burden.
I will be praying and to remind myself to pray often I will make a prayer-bead-butterfly for the prayer tree. How does this one look? the sun was not quite up as you can see from the cobalt blue behind the bead, but the sun was setting the name part on fire--it looks better than the pic--very flashy and bright on the name but cool blue and purple on the bead.
Wow, Janice, I don’t know what to say. That’s so kind of you and the bead is just lovely. I feel better already! <hug>
Janice, What a wonderful sweet thing to do!!! I LOVE the idea of your prayer tree.....never heard of that before.......do you have pictures you could post?
Jesse, I'm also on Imuran but haven't been down this road before. I've been on it for 5 weeks & at first I hated it because of the long term effects but just this week I saw a major improvement so now I'm torn about getting off of it. Praying everything works out for you!!
Renee, the prayer tree idea came to me bc I am too ...uh...old? lupusy? too...something to sit in trees like I used to do when I was a kid. I had a very special tree that I thoughtof as my best friend.
the butterflybeads actually started out as a fork meditation (lol) I used to hate to wash silverware until I turned it into a prayer--each fork , spoon or knife was one prayer, "May Jesse feel the peace of Christ" for example. It only took a day for fork washing to be may favorite prayer. Well, Lupus struck and I was back to hating dishwashing (how quickly we forget)
But God remembers and sends reminders when we are ready. He kept bring me back to the sink and planting good ideas in my head while I was there. I began to notice that it was Him calling me, so I went more eagarly, and now dish washing-prayer time is special to me. So I thought: I will a make butterfly for every one I am praying for, put their name on it and put it over my sink so I won'r have to try so hard to remember names. Well...lots of butterfly-beads...so I made a wheel and then another and then I decided a tree would be nice because it can grow---I can always add more branches. You don't have one yet, do you? well...you will in the morning:)
I am getting some really cool pics. Maybe I can start a folder on My Page and start a butterfly collection. I will see what I can do.
Jesse, I am really praying for your new course of tx to go well. God can do anything and he is so awesome and so in love with us. I know his heart breaks for you when you are sick, for all of us. Let's trust him together.
I'm looking forward to seeing pictures too!
Renee, I know just how you feel about Imuran. It's definitely a love/hate thing. I've been on it three years and always worry about the long term side effects, but what option do we have? Doing nothing is worse.