Anyone have experiece with this? I've been trying for a year and am on a schedule of 2mg MWF and 4mg the other days. I've made it 2 months straight (have tried for a year but my immune system would plumet) - but my symptoms have been the initial fatigue, in bed by 5-7pm after work, menstral cycle change and now swollen eczema around eyes, sinus and muscle fatigue in calves.
PLease share your experience.
by the way my eczema swelling around eyes has been clearning with initial eye steroids 2 days & decongestents. Stopped and the last 3 days juicing and master cleanse in the morning. Fatigue hasn't been as bad as it was in the beginning of this process.
Note: I've been on steroids since May 2011 when I had my initial acute onset. Also recieving cyotoxin treatment 1x a month for nephritis and tapered down to 4mg in fall 2012. I'm figuring it will take a year to be fully at 2mg and totally free. My lupus isn't in remission yet but is quietly active and my nephrologist predicts I'll be free of cellcept in 2-3years.
Sounds like you are doing great- some of us are not so lucky to get as far down as you so keep up the good work
I’m on 120mg im medrol a day. I can only taper by 5mg for about a week before I start having symptoms. Hopefully the cytoxan will let me start a slow taper. Some people cannot taper at all. Despite all the side effects (and trust me, I have them all) I’m grateful there’s a medication out there to save my life. Good luck with the taper and don’t be to harsh on yourself if your body isn’t ready yet.
I have been on prednisone since April. They are trying to get me off of it as it gave me cataracts in my eyes as well as give me cushing syndrome (sp) as well as leg cramps, muscle weakness and on and on it could go. My docs wanted to get me off of it so they could see if what i was feeling is from the prednisone or the lupus. I was at 20 mg and over a 5 wk period I am now on 10mg. with each decrease I feel even worse!!! my leg cramps and weakness is still there and I am starting to feel the way I did when I first became ill. my pain is starting to get out of control! On top of it my SED rate is on the rise more and more with each decrease. my doc is starting to think that I may never get off of it. they might put me back up at a higher dose and try it at an even slower pace. See him in 3 wks and shall see what they decided to do.
hope they can figure out what to do for you! Will be praying for you! :)
poobie, thanks for the encouragement. Its hard.
poobie said:
Sounds like you are doing great- some of us are not so lucky to get as far down as you so keep up the good work
Jen, that's a lot of steroids, wow. I didn't know it could go that high. Cyotoxin did help and I noticed my hair started growing back. More and more research is out there so that maybe someday we will have some better alternatives to steroids. I was diagnosed in 2011 and have already seen a lot of breakthroughs and studies out there. Also thanks for reminding me not to be too harsh on myself, my personality is a little hard driven and goal oriented. I'll have to keep this in mind and if I have to go back to 4mg 7 days a week, then I may have to.
Jen said:
I'm on 120mg im medrol a day. I can only taper by 5mg for about a week before I start having symptoms. Hopefully the cytoxan will let me start a slow taper. Some people cannot taper at all. Despite all the side effects (and trust me, I have them all) I'm grateful there's a medication out there to save my life. Good luck with the taper and don't be to harsh on yourself if your body isn't ready yet.
Wow louters, thats a lot. I worry about cateracts and other things I've heard of, that's why I've been pushing to get off and am glad my rheumy is on board with that thinking (more rheumetologist are not trying to get their patients off steroids if they can because of the negative side effects). It really sounds hard what your going through. Do you have to work on top of all this?
Louters said:
I have been on prednisone since April. They are trying to get me off of it as it gave me cataracts in my eyes as well as give me cushing syndrome (sp) as well as leg cramps, muscle weakness and on and on it could go. My docs wanted to get me off of it so they could see if what i was feeling is from the prednisone or the lupus. I was at 20 mg and over a 5 wk period I am now on 10mg. with each decrease I feel even worse!!! my leg cramps and weakness is still there and I am starting to feel the way I did when I first became ill. my pain is starting to get out of control! On top of it my SED rate is on the rise more and more with each decrease. my doc is starting to think that I may never get off of it. they might put me back up at a higher dose and try it at an even slower pace. See him in 3 wks and shall see what they decided to do.
hope they can figure out what to do for you! Will be praying for you! :)
by the way, thanks for praying. The Lord has taken me a long way and I will pray for you as well.
greensurfer said:
Wow louters, thats a lot. I worry about cateracts and other things I've heard of, that's why I've been pushing to get off and am glad my rheumy is on board with that thinking (more rheumetologist are not trying to get their patients off steroids if they can because of the negative side effects). It really sounds hard what your going through. Do you have to work on top of all this?
Louters said:I have been on prednisone since April. They are trying to get me off of it as it gave me cataracts in my eyes as well as give me cushing syndrome (sp) as well as leg cramps, muscle weakness and on and on it could go. My docs wanted to get me off of it so they could see if what i was feeling is from the prednisone or the lupus. I was at 20 mg and over a 5 wk period I am now on 10mg. with each decrease I feel even worse!!! my leg cramps and weakness is still there and I am starting to feel the way I did when I first became ill. my pain is starting to get out of control! On top of it my SED rate is on the rise more and more with each decrease. my doc is starting to think that I may never get off of it. they might put me back up at a higher dose and try it at an even slower pace. See him in 3 wks and shall see what they decided to do.
hope they can figure out what to do for you! Will be praying for you! :)
I hope they can get you off its such a nasty drug!!!! I am glad you have a great doctor as well that is listening to you and is wanting to get you off. No I am not working, my mom has been great at helping out with my needs. I am in the middle of claiming Social security. I am also working with a disability center to help me with school and once I graduate they will help me get a job. Or if I become well enough to do a part time job they will help me then. But I can only do about 15-20 mins of work before being worn out and if I have to go long distances I have to use my wheel chair.... so lots of adjustments but I am getting there.... :)
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