View Full Version : Question regarding Prednisone.

11-23-2010, 09:00 PM
Hey guys! I thought maybe you'd be able to advise me here. I've been on pred for ten years, with the dosage very high at first and have been tapering down ever since. I've been on 5mg every other day for a very long time, and I'd like to get to a point where I'm off of it.

Is that possible? My doctors seem hesitant to ever let me go off of it completely. I'm not sure if that's because of the fact that I've had a kidney transplant, or just the Wegs. Pred has some really terrible side effects though, it's given me cataracts, and the weight gain and all of that, so I'd like to know your opinion on this! :biggrin1: I apologize if there's already a thread like this, I wasn't sure.

11-23-2010, 09:28 PM
Hmmm....well, the good news is that people do get off Pred. The not-so-good news is that it's entirely dependent on your individual situation. Your docs will be worried that reducing the Pred further will cause more issues or a flare. Do you know what they are basing their decisions on? Do you have some abnormal blood test or symptom that would be exacerbated by reducing the Pred? 5mg every other day seems to me to be a small dose and if I were you I'd press the point with the docs and see what they say. Bare in mine though that if reducing the Pred further does cause more issues then (and this is only my assumption) you may be returned to a higher dose for a short period of time to get you back under control. Like I said though, if it were me I'd press the point with the docs. I know I'm telling you what you already know when I say DON'T do it without the docs permission :)

11-23-2010, 10:25 PM
I had a chat with my own transplant doc just the other day about this subject. He was saying that in his opinion stopping pred for treating a transplant was worth the increased risk of rejection, but he was less sure about removing it from the treatment regimen for Wegener's. However, I know that other specialists think that the risk is worth it.

Having suffered from about every Pred side effect in the book, I would be in favour of trying to go Pred free. If you did this, it would need careful monitoring by both yourself and the doc and you would have to react at the first indication of things going wrong. In my own case, I can't get below 10mg without having a bad reaction so I know that it is not an option open to me.

11-24-2010, 12:09 AM
Nikk, how long have you been on 5 mg of prednisone every other day. Yes, I understand all the side effects of Prednisone...have most of them. I also had a kidney transplant 21yrs ago. I got off prednisone 10 yrs into the transplant, but I had to ask to get off. I too was doing the 5 mg every other day and then completely got off it. I was also a perfect match, so that helped my case. There is some documented cases of people going without the immunsupressant because they were perfect matches ( antigen). But my docs were not interested in me getting off all meds.

11-24-2010, 01:42 AM
NIkk, I don't know about the transplant aspect, but I can share what Dr Seo has told me about it. I asked him about Weggies in general getting off pred, and if those who'd been on it for years could ever get off. He said the longer you've been on it the slower you have to go, but it's often doable. He emphasized that you have to go extremely slowly. If you go too fast and don't catch it in time (within 2-3 days) you have to go back to the starting dose and wait there for 6 months before trying again.

Also, since pred doesn't stay in the body for very long, once you get to 5 mg or below each day, you sometimes have to split it in half to have enough on board in the afternoon. The fact that you're doing okay with 5 mg only every other day makes me wonder how much you need it. I'm back down to 3.25 mg daily (continuing to taper) and could never skip a day. I'd be crashing by midday.

It's a good conversation to have with your docs. You need to really get to the bottom of their hesitation and get the facts. Find out if they're truly opposed to it or just worried. And if you were to do it, how could they monitor you to make sure everything is okay? If they give you the go-ahead, let us know and we can share info about how to know if you're going too fast, etc....

11-24-2010, 05:49 AM
I have been on this dose for at least four years, and I appear to be doing fine with it. I've asked my doctor before about going off of it, but he seems really hesitant to let me do that. He's worried that I'll have problems, although all my bloodwork has been fine for years. I'll have to talk to him about it again and see what he thinks, it's been a while since I've brought it up and now that I'm older I don't have my mom there telling me to just listen without asking. :P Thanks for all the info, guys.

11-24-2010, 05:59 AM
It is worth having the discussion because if you are able to get off steroids without immediate problems it really comes down to a balance of risks. A lot of this would be down to you reacting to problems if they should occur rather than going into denial. You would not be able to risk doing that and it could result in you getting into big trouble.

11-24-2010, 06:24 AM
now that I'm older I don't have my mom there telling me to just listen without asking.
That's a good thing, because it's important to be a full participant in your care. You can get into real trouble with Wegs if you aren't armed with info and know exactly what your docs are thinking, what their plans are and how your drugs work. This isn't an illness where you can just leave it to them to treat you. (Though I wouldn't do that with any condtion) :smile1:

11-24-2010, 06:55 AM
I would vote in favor of the frank discussion with your docs. They may be thinking, "if it ain't broke, don't fix it" and may not be fully concentrating on the damage that pred can do long term. Or they may be thinking that they can't monitor you frequently enough and they need the pred for extra protection (in which case the answer is to figure out how to get monitored more often).

I met people at the Symposium who were completely drug free, so it can be done!

01-07-2011, 12:23 AM
tappering preds why do i feel as though ive been run over by a bus !! dont know were i ache most down to 1o mg suppose to go to 7/2,5 in three weeks :unsure:

01-07-2011, 02:00 AM
ok 3pm and sill in pj's on a cery go slow day :mad1:

01-07-2011, 07:35 AM
just had three hours sleep sa not so bad .wait and see what tommorrow brings

01-14-2011, 05:17 AM
well things just about the same , spoke to gp today as joint pain set in again especially my hands for some reason !!!!!
definately not going down to 7/2.5 doing to see what happens over the weekend
have had j pains when dropped before but not for this long :predrage:

01-14-2011, 06:53 AM
Andrew, I think this thread is busted. :ohmy:

01-14-2011, 09:37 AM
Does any one know about any research on percentage of people with Wegener's disease that are able to actually get off prednisone totally? Since this would be a very individual thing it would seem the people with a milder form (no kidney or lung involvement) would be more likely to do so. It seems there are number of people here that reach a certain limit on how far they can go down on their prednisone without having problems or symptoms that require resumption of prednisone. It seems that getting off prednisone altogether is a desirable goal, but one that may not be attainable to many of of us.

01-14-2011, 09:51 AM
I don't know any statistics about it, but Dr Seo told me the Weggies who have the most difficulty getting below 10mg or off pred are those with bad sinus involvement. Like you, I would have thought milder disease would be easier, but it's not.

01-19-2011, 01:34 AM
I don't know any statistics either, but the docs at the Symposium certainly made it seem as though that was the 'normal' goal which would suggest that a majority of patients have a shot at it (presuming they are being treated with the correct immuno at the correct dosage.