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Predisone question

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Posted 4/30/2008 8:24 PM (GMT 0)
I need help with trying to get my Drs to keep me on Predisone. How do you address this problem. They put me on it and ween me off. When I am on it I feel great. No skin rashes and I can sleep and am up early. How do I talk to my Drs about this they do not want to keep me on it. Any suggestions????
Posted 4/30/2008 8:27 PM (GMT 0)
I would tell my doctor how I feel on it and how I feel without it. I don't expect you will get very far though that stuff is awesome but it is also the evil drug. You feel great now but hopefully you will still have to be living in your body in 10,20,30....years and how will you feel then if you take this stuff now? On the other hand my rhuemy has let me stay on a low dose 5mgs for six months while we waited for other stuff to kick in.
Sj
Posted 4/30/2008 9:22 PM (GMT 0)
Hi Tink,

 

Well!  You and I are one of the few that WANT to be on Prednisone, lol!  Like Sj, I would stress how important it is for you to remain on it. Tell them that without it, you flare up.  You feel much better and healthier staying on even a low dose.  This is your body, not theirs.  If you want to stay on pred, you have the right.

 

For me, prednisone will be a life long drug to take.  I'm okay with that.  I know there are side effects to taking it long term, but I'm looking after that.  Didrocal and extra calcium for my bones, etc. 

 

The constant ups and downs of dosing with prednisone actually makes your body work so much harder to stay well.  Staying on a constant dose and doing little tiny adjustments is much easier on your adrenals, and on your lupus.  Do you have a dose that really works for you?  A dose that when you're on it for a while, you barely notice any lupus symptoms?  If you have reached a dose like that, then that's what you need to stay on. Be aggressive with your doctors. Tell them, don't ask.  Even if they tell you to taper off of it, you can say, "no way!"  Just stay on it! You know your body best.  Doctors don't get it.  They really don't.  Unless they know 100% how you feel on it and off it, they won't get it.  All they'll think about is the bad side effects, not the fact that it's saving your life when you're on it.

 

I hope this helps!  I know it's a great medication for us, and it is a wonder drug in my opinion.  It's given me my life back, and it sounds like it does the same for you too!

 

Good luck and let us know how you make out!

Ginny

Posted 4/30/2008 9:43 PM (GMT 0)
I've found that most doctors are okay with longer term prednisone treatment in smaller doses, as long as an aggressive regime of calcium support for the bones is followed. However, prednisone is primarily to control inflammation -- perhaps your doctors are trying other medications that are supposed to more specifically treat disease control? When the disease is controlled, the inflammation should decrease and the prednisone be less necessarily. I see that you also have diabetes. That may be why the doctors would like to avoid prednisone -- steroids do tend to make diabetes more difficult to control, as they do have some direct impact on how the body uses carbohydrates. I would ask your doctors if they can explain the rational for the "roller-coaster" use of prednisone they've been advising. Perhaps together you & the doctors can come up with something that gives you more stable results. Good luck.
Posted 4/30/2008 9:59 PM (GMT 0)
The way my doctor explained it to me.. is that the pred is there to give you immediate results until other meds kick in. For example, Plaquinil (sp?) takes 6 months or so to kick in so you start off with pred and then taper down so that once you hit the 6 month mark, you are either on a very low dose of Pred or off of it completely.

Ti

Posted 5/1/2008 1:05 PM (GMT 0)
Your doctor should explore other meds for your long term maintenance.  Sometimes prednisone is the only answer but it is better to try others first.  I have been on pred for 3 years and also on imuran.  The current dose is only 5mg so it is not a problem and I am feeling no side effects execpt elevated blood pressure which is being treated.

If your doctor is not experienced get a second opinion.

Bill

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