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Posted 8/8/2008 9:08 PM (GMT 0)
Well,  like must of you prednisone is my best friend and worst enemy!  I have been trying to come off of it unsuccessfully forever!  My doc really thought my adrenals had crashed from being on it so long.  I decided i'd give it another try.  For two days i've only been taking 5mg. and I haven't had any major malfunctions!

I am really trying to lose the weight that i've gained back over the last 2 years.  I was weighed in the ER the other night and totally humiliated!  Besides the fact that i'm miserable!  I haven't had a coke all day! ( which is miraculous, i'm a addict!)  Anyway, i'm really encouraged.  I pray that everything stays stable.  God bless you all, Judy

Posted 8/9/2008 1:47 PM (GMT 0)

Hi! Judy,

Me, too. I have been on 5mg for the best two years I have had since before I was even diagnosed. I can walk, and haven't fallen in over a year, and I can work. I have decided to go into a coma state every time I get on a scale and I tell my nurse to write down "105" pounds under the weight column. Hey, it works for me! tongue   I, too, am a coke addict. NOT PEPSI,Please! and coffee. So the best I can do is limit how much I drink. I figure it's all about moderation..... I drink two big cups in the morning with lots of milk, and when I buy coke, I only drink one bottle and then have to refill at least 2 times with water. Caffeine has some good qualities.

hugs,

suetoo

p.s. please don't lose any weight... I am afraid I will probably find it.

Posted 8/9/2008 2:51 PM (GMT 0)
(((( Judy ))))) that is great news! I pray the low dose works well for you! I love my coke's too yeah but to try to cut down on them when I am at work I drink water. I have to start my day with some sort of sugar drink every now and then I will drink 1/2 cup coffee more often I drink 100% grape juice.

I will be praying for you! Take care
Posted 8/9/2008 6:48 PM (GMT 0)
Thanx guys! I'm definitley struggling energy wise today. I don't know if it's a lack of caffeine or the drop in pred! I'm hanging in there! Love ya, Judy
Suetoo-lol, you sound like me, if anybody loses it I will be the one to find it.
Posted 8/10/2008 12:11 AM (GMT 0)
Judy, I hope the decrease in prednisone isn't the cause of your lower energy - it very well could be the lack of caffeine if you are used to it everyday. Your initial post gave me lots of hope because I'm going to try to go down to 5mg this fall once my kids go back to school. I've never been able to successfully stay at 5mg either without feeling really crummy. My rheumy did tell me that sometimes you feel crummy for a few days while your body is trying to adjust. I hear you about the weight - I've had a really tremendous and embarrassing weight gain through this whole thing. I'm still regularly horrified when I look in the mirror and don't recognize the person looking back. It's been very slow, but since April, I have lost 10 pound just be trying to make a few adjustments in my eating habits. Even though this is a very slow weight loss, I try to encourage myself by telling myself that at least the scale is going in the right direction. Keep us posted on how you are doing. It really might be a little rough on your system to go cold turkey on the caffiene while you are going to a lower dose of prednisone too.
Posted 8/10/2008 1:42 PM (GMT 0)
Hippy,
Congrats on your weight loss. They say slow is so much better and tends to stay off. I get frustrated and want immediate results. I have some bad news! I had to go back up to 10 on the pred. I got to where I absolutley could not function at all. I did think possibly it was the abrupt cut of caffeiine, or maybe the severe anemia. But, it got so drastic. A couple of hours after I took the extra pred I felt fine. BAaaah! I can't tell you guys how sad I am. I am desperate to get off of it for a while at least. Any suggestions? I was wondering if it would make a difference if I cut to 7.5 for a while and then down to 5. Oh well, don't be discouraged, maybe it will work for you. Bless you, Judy
Posted 8/10/2008 2:41 PM (GMT 0)
(((((Judy)))) What you went through sounds so much like what I go through everytime I try to go to 5mg. How slow of a taper are you trying? It sounds like too big of a jump to go right to 5mg from 10mg - you should probably be at at least 7.5 for a while in between the two. My rheumy is having me try a pretty slow taper. RIght now I'm at 7.5 and this fall I will alternate between 7.5 and 5 every other day for 4-6wks and then try to go to 5mg everyday. I'm hoping the alternating doses will help my body adjust and that it won't be such a shock when I try to take 5mg everyday. Don't give up -maybe talk to your doc about a slower taper. Take care.
Posted 8/10/2008 6:41 PM (GMT 0)
Thank you Hippi. I think I will try to do a slower taper. I went straight from 10 to 5. That obviously was not a good plan. Hippi, do you ever just feel desperate or panicked about getting off of the pred. and the weight issue? One time before I lost 140 pounds during a brief remission. It's like when I first got sick 10 years ago, I could bounce back easier. I don't bounce back like I used to. I'm really scared about not being able to lose the weight and become more mobile. I will gladly accept any advice. (surgery is not an option for me because of end stage renal disease) Thanx, Judy
Posted 8/11/2008 12:09 AM (GMT 0)
Yes, I do panic at times because I also don't bounce back very well anymore either and weight loss is a huge challenge and I get scared of not being able to get it off. I know that the extra weight I carry is so hard on my body in so many ways and makes me more vulnerable to other things like heart disease, diabetes, etc. It's like a vicious (sp?) cycle that is so hard to get out of. I am ashamed to say that I am 80lbs heavier than I was when I got sick and 100lbs heavier than I was at my most healthy point in life. It's a scary thing, but I guess the key is to never give up. Sometimes I feel like it, but I know if I gave up trying to lose weight, I'd end up gaining another 100lbs. At least we have each other to try to encourage through all of this. If anyone else wants to, maybe we can start an ongoing topic for those of us who are trying to lose weight and post encouragement and updates and any helpful tips. I'm going on vacation soon, but maybe when I get back we can try to get something started if anyone wants to, or feel free to start it while I'm gone and I can join in when I get back.
Posted 8/11/2008 12:46 AM (GMT 0)

Oh Judy, bless your heart. I'm sorry you had to go back up to 10. I think the 7.5 is a better idea. I also have seen people on here that go from 10 to 9 to 8 and so on  by cutting their pills. I've been on 10 mil. forever it seems. I hate my arms the most. It takes 10 mins.for my arm to stop giggleing when I wave to someone! Then the days that my favorite shoes don't even fit! I never even heard of fat feet before predisone. You may never be able to get off of it completely but from what others here say as well as myself. anything under 10mil. does seem to not have the same symptoms (like hunger). I'm actually more afraid of getting off of it because I know I don't do well without it. but if I could get down to 7.5 it would be nice. You might want to give yourself a little time on the 10mg. before you try to go down to 7.5. Just to make sure you start off on the right foot.

love ya let us know

carol

Posted 8/11/2008 2:22 AM (GMT 0)
Thanx Okie! Hippi, I personally could use the enouragement of an ongoing topic. I really appreciate everyone's input. It helps. I think you're exactly right about not giving up. Sometimes starting over constantly gets hard and you lose your courage. But, we've got to keep on trying. I'm starting again tomorrow. God Bless and Help us all, Judy
Posted 8/11/2008 12:08 PM (GMT 0)

I've only been on prednisone therapy once, but it was a doozy of a dose.  I was started on 80 mg, and instructed to taper over a week's period.  I believe the last two days was 20mg, and then down to nothing.  It was too much for my system.  I believe my adrenal glands were having difficulties.  I lost 10 pounds off the bat (8 of which I had gained in the brief time I was on the prednisone), and I remember being extremely fatigued and thirsty beyond reason.  I couldn't drink enough water (which is very unlike me).  I was starting to get a little worried about it, but after about 3 or 4 days, things started calming down again.  The take home point is that prednisone is a very difficult drug to come off of.  And I believe it needs to be done very very slowly.  Also, some people are more sensitive to it than others.  The doctor who prescribed it to me (not my rheumy) obviously felt that it was safe.  My rheumy was horrified that I was on such a high dose (I don't think he ever would have prescribed that high a dose--I was flying).  Some people may have been able to handle it?  I would taper very very slowly.  And know that if you want it to happen and work towards it, then eventually you'll be done with it. 

Best of luck to you,

Elcamino

Posted 8/11/2008 5:12 PM (GMT 0)
I've been on the prednisone for 10 years. I was up to 120mg by mouth for many, many weeks at one time. Then I was on 120mg every other day for many many weeks. The highest dose i've done recently by mouth is 60mg. In the hospital in June, they hit me with solumedrol, IV push, 125mg every 8 hours. It is very potent. I'm going to do 10mg this week and next week try 7.5mg. Judy
Posted 8/11/2008 5:33 PM (GMT 0)
Judy, just don't go too fast. I got some great advice here from some of the other members that you should feel good for a few weeks at your current dose before trying to taper to a lower dose. I've gotten too eager and tried to taper too soon only to find that I tried too soon and was upset that I had to go back up. If you are successful at 7.5mg, then stay there for a few weeks before tapering anymore. I wish we didn't all struggle with this so much. I also need to be a responsible moderator and say that of course you should follow your docs instructions about tapering. I know a lot of you are like me and have instructions from our rheumies about how they want us to taper and when we should go back up and to call if we have questions. My rheumy gave me instructions and knows that I know when I need to increase and how to start to taper again.
Posted 8/11/2008 7:34 PM (GMT 0)
I'm finally off the pred but I can relate to being humiliated by weight! My doc told me I had three months to make a dent in my weight loss before he takes more drastic action. Not sure what the drastic action is but I almost just want him to intervene because my motivation just isn't there right now.

Hang in there. You will beat the Coke habit! That will help with your weight loss efforts as well because sodas have so much sugar. You will be much better off.
Posted 8/12/2008 2:03 PM (GMT 0)
The weight thing is such a problem for us. I started a competition with a group of girlfriends and it does give me a little extra motivation. I know it will be harder for me to lose than it will be for them, but I don't care. I started the contest, had everyone pledge $10 and we have about 12 or 14 so far, so the winner will get about $120 in yarn in three months. (We all knit together) I know I won't win the yarn but my prize will be a little weight loss. I'm down another 5 since we started. Can you say steamed broccoli? It's so hard when your joints hurt like crazy and when you're still on prednisone, but sometimes a little extra umph helps. Baby steps.

That coke thing is a killer. Sometimes I substitiute cold mineral water and I can really swig it down. The bubbly in it helps me forget about the coke. Lots of folks hate it, though.
Posted 8/12/2008 9:31 PM (GMT 0)
That makes it fun and challenging. (The contest). Lol about the steamed broccoli! I just had my sister buy some. I'm off of the coke. I've never tried the mineral water. Will it help the nausea? Hippi- I'm going to take it slow on the pred taper. I hope you all do good in your efforts also. Thanx so much for the encouraging words. Judy
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