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Medical Forum / Diseases and Disorders / Arthritis / March 2008I do not like this at all
I think I have mentioned that the dr I have now doesn't want me on the 20 mg pred for life for my lungs. So she is sending me to a pulmonologist (sp) on the 21 of april. so I started weaning myself off the pred, because if he or she does not agree she is taking me off it altogether. I am now down to 10 and of course the adrenals don't like that but neither does my body. I didn't realize it was helping my body so much. When I was up to 30 mg for the pnemonia and infections, when I weaned down to 20 I found out it really helped the chest stuff. Now I am finding it helped the muscle spasms some, I still had a few but not like I am now, now every day several times a day. They are bad too, real strong and real painful. I am having them in the back, rib cage, chest and stomach area. Also it was helping my allergies, now I am breaking out a couple of times a day again with the jaw hives. Oh if only I could find a dr that would keep me on it, It fixed the lung stuff, the adrenals, and the pain levels, also the allergy stuff. Also I could eat almost anything will on it at that level, now getting sick when I am eating again. So I don't like this at all.  SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. Did your dr say to wean off the prednisone? It sounds to me like you are weaning too fast. Someone who has been on as much pred as you take for as long as you have has to take this very slowly. Please talk to your dr about this ASAP. Walt >I think I have mentioned that the dr I have now doesn't want me on the 20 >mg pred for life for my lungs. So she is sending me to a pulmonologist (sp) [quoted text clipped - 21 lines] > > So I don't like this at all. > Did your dr say to wean off the prednisone? > [quoted text clipped - 4 lines] > > Walt Walt beat me to it. You should decrease prednisone dosage 5 mg at a time over a fairly long ramp down slope. Else you can get a rebound which apparently is what you are experiencing. While not a doc, I've had runs of the stuff. It's my info that you don't need to worry about adverse side effects until they manifest themselves. That is, some people may have long term issues with the drug at 30 mg / day but some may not. I didn't think it was necessary to cut back on the stuff (assuming its working) unless you are having some adverse side effect. -paul >> Did your dr say to wean off the prednisone? >> [quoted text clipped - 9 lines] > over a fairly long ramp down slope. Else you can get a rebound which > apparently is what you are experiencing. That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. For many people that large a cut makes a rebound a sure thing. > While not a doc, I've had runs of the stuff. It's my info that you don't > need to worry about adverse side effects until they manifest themselves. > That is, some people may have long term issues with the drug at 30 mg / > day but some may not. I didn't think it was necessary to cut back on the > stuff (assuming its working) unless you are having some adverse side > effect. That could be so and something an RD and the person should work on together. Harv > -paul > That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. > For many people that large a cut makes a rebound a sure thing. Our information differs. >> That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. >> For many people that large a cut makes a rebound a sure thing. >> > Our information differs. I think a lot of it depends upon the person, how long they have been on the prednisone, and how high the dose is. I know that my son was on 80 mg/day for 6 months and tapered in 10mg steps, which worked for him. I have never been on more than 25mg a day, but it was for over a year and I had to cut back in 1mg steps. It just all depends. The key is that rebound symptoms probably mean you are cutting too quickly for you. Walt >>> That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. >>> For many people that large a cut makes a rebound a sure thing. [quoted text clipped - 11 lines] > >Walt Or it may mean that you need to keep taking it at a higher dose. Thumper My RDs both insisted I cut back no more than 1 mg at a time. Gave me a ton of 1 mg tablets to make sure I only went down 1 at a time. My two cents' worth. DeeTee >> That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. >> For many people that large a cut makes a rebound a sure thing. >> > Our information differs. >> That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. >> For many people that large a cut makes a rebound a sure thing. >> >Our information differs. Everyone is different. I wish doctors wouldn't be so crazy about Prednisone. Thumper >That is incorrect Paul. For many people 5 mg cuts are wayyyy to fast. >For many people that large a cut makes a rebound a sure thing. So true, Harvey. Any time I have been on higher doses I have been cut as little as 1 mg. every 2-3 days, depending upon the original dose. You don't want the adrenals to shut down. Joan Walt has a good point. If the Pulmonologist knows you are weaning yourself off Pred, he/she might think you don't need it after all. Be positive in your assertion that it is one of your important meds. Nanny > Did your dr say to wean off the prednisone? > [quoted text clipped - 32 lines] >> >> So I don't like this at all. Answering all here: Walt, no the dr didn't say to wean off the pred. I am doing it on my own, she said she will not give me any more pred. They don't seem to believe that we need to wean off it out here, they just drop you off of it no matter what dose you are on. It has happened time after time for me. No more, so I started weaning off it myself. I am doing it by 2.5 every two weeks. I don't have any 1 mg pills to do it slower. I only have 20 mg and 10 mg so have cut those down as much as I can. The pulmonologist is to see if they will keep me on it at all. Which I don't believe they will. No one seems to believe that I am as bad as I am. Dr Cepe did, but he left the practice and so it is. I started with the 2o mg then when I had that pnemonia in Dec - Jan they upped it to 30. Then they wanted me to drop off it to 20 mg. I tried dropping down by 5 mg and couldn't do it so did the 2.5 every 2 weeks since then. Didn't see any real bad side effects from that except this pain issues. My adrenals didn't seem to have the effect it usually gets from me dropping down too quickly. So you could be right and I am dropping it too fast, but I am soon going to be out of pred and then it won't matter anyways. Harv, the reason I am doing this is the dr wants me off it, and she would drop me down from the 20 to nothing, no weaning. I can't do that because of the adrenal issues. So I am doing it on my own before she totally cuts me off which is probably going to be next month. So then the effects won't be half as bad. I am not going to tell the pulmonologist I am weaning off of it. But on the other hand if he hears how bad my breathing is now then he might say to keep me on it and do something also to help the breathing issues. DeeTee, this is the reason I am weaning down now. they don't seem to think it is a big deal to drop someone from 20 mg to nothing at all. But for me it is dangerous. With my adrenal issues, it could very well kill me, but no one seems to agree with it. Anyways except the ones that know alot about addisons, and know how to treat it right. These docs don't have a clue at all. Sorry to take so long to get back to you. With all that is going on with family and then my health I just couldn't get back sooner. I appreciate all the response and at least now I see what could be happening. I just wish I could find a darn doc. that would wean me off of it slowly or else keep me on it which is what I believe I need. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Did your dr say to wean off the prednisone? > [quoted text clipped - 5 lines] > > Walt Hi Jo,,,, It seems to me that you deal with the problems of medicine and doctors about as well as anyone can. You know that stress and pressure are not our friend. It does help to just give all that to God and to forgive the people in our life that do not understand what we have to live with and make us angry. What really helps is inner peace and we have a little control over that if we work at it a little. Sometimes I have to tell myself to let something go because there is just nothing I can do about it and worry only makes things worse. No matter what is taking place,,, you know that God loves you and we love you and need to have you in our lives. Harv > Answering all here: > [quoted text clipped - 54 lines] >> >> Walt Thanks Harv, and I feel the same about you. We need you here for us too. ;-) I just do what I can do to try to help me and let the rest go when I can't. I don't always like it but what can you do. You can't make them keep you on something that works. There is too much other stress right now for me to be stressed about this now. I am too concerned for hubby right now. It just is not going good for him at all. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Hi Jo,,,, It seems to me that you deal with the problems of medicine and > doctors about as well as anyone can. You know that stress and pressure [quoted text clipped - 7 lines] > in our lives. > Harv Well put, Harv. Same here to Squirrelly Jo, one in a million! Nanny > Hi Jo,,,, It seems to me that you deal with the problems of medicine and > doctors about as well as anyone can. You know that stress and pressure [quoted text clipped - 66 lines] >>> >>> Walt Good grief!! Where'd they get their medical training - the middle ages school of medicine? Honey, be safe. Dropping pred is so dangerous. I worry about you. Hopefully the pulmonologist will see the light and insist you stay on it. DeeTee > Answering all here: > [quoted text clipped - 54 lines] >> >> Walt That was cute DeeTee, I immediately heard Dr. McCoy of Star Trek saying Well leave it to 20th century medicine. ;-) LOL I am trying to be as safe as I can in weaning off this. But it was something I figured I had to do, because I can't let them just drop me from 20 to nothing. My adrenals will go into adrenal crisis that way. In fact during the weaning process I learned that really quickly when trying to wean at 5 mg doses. I had to do it at 2.5 and that stopped the crisis from happening. I wish I had 1 mg and could go slower but I don't. I am going to ask the pulm if he will give me 1 mg if he says I have to stop taking it. It is getting harder since I am at the 10 mg level. I see more effects from the med than before. I am hoping and praying too DeeTee that the pulm will see the need for me to stay on it. I can't get a RD or a endo that will keep me on it for the other stuff so this was my one hope when Dr. Cepe put me on it for the lungs and COPD. Then of course he had to leave the practice and now I have to deal with a dr that sees no reason for me to be on it at all. But then again we are talking about the same dr that in Dec, Jan, said she couldn't hear me wheezing and rattleing, and whistling with her stefascope (sp) and I could hear it and didn't have her medical instruments to hear it. Dah. So that is why she dropped me back from 30 at that point to 20. She thought I was all better and I wasn't but you can never tell them anything. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Good grief!! Where'd they get their medical training - the middle ages > school of medicine? Honey, be safe. Dropping pred is so dangerous. I worry > about you. Hopefully the pulmonologist will see the light and insist you > stay on it. > > DeeTee >Walt, no the dr didn't say to wean off the pred. I am doing it on my own, >she said she will not give me any more pred. They don't seem to believe that >we need to wean off it out here, they just drop you off of it no matter what >dose you are on That is terrible. Your adrenals usually manufacture about 5 mg. of Prednisone or the equivalent whatever daily. When you start taking oral Prednisone your adrenals sort of go to sleep and stop producing. If you come off steroids quickly the adrenals are back in the cave sleeping and suddenly they are needed and not there. Then you have to send someone into the cave to search for them and get them back to work, and they are sleepy and snarky, and you get the picture........... I know Joan, we all know that here and we know what it will do, but making some medical people wake up and smell the roses is another thing. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > >>Walt, no the dr didn't say to wean off the pred. I am doing it on my own, [quoted text clipped - 12 lines] > and get them back to work, and they are sleepy and snarky, and > you get the picture........... Ah, dear SJ - I surely hope the pulmonologist is more responsive to your body's needs than you other doctors seem to be. I know there are lots and lots of worries wit long-term pred use, but some folks just do need it. You and your family continue to be in my prayers, even though I haven't been typing much lately. All this stress all of you have been going through must be taking a real toll on everyone. May all of you find some peace and rest soon. SignatureNann remove the Gator cheer to email me Change everything. Love & forgive. Thank you so much Nann from me and my family. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Ah, dear SJ - I surely hope the pulmonologist is more responsive to your > body's needs than you other doctors seem to be. I know there are lots and [quoted text clipped - 7 lines] > rest > soon. Honey - I would not start weaning until the doctors tell you to wean. No need to be miserable while waiting for the appointment. Be comfortable for as long as you possibly can. That's my opinion. DeeTee >I think I have mentioned that the dr I have now doesn't want me on the 20 >mg pred for life for my lungs. So she is sending me to a pulmonologist (sp) [quoted text clipped - 21 lines] > > So I don't like this at all. I wish you well with the Pulmonologist, Squirrely! Just tell him/her how Pred helps you; perhaps there will be compassion and understanding on the >I think I have mentioned that the dr I have now doesn't want me on the 20 >mg pred for life for my lungs. So she is sending me to a pulmonologist (sp) [quoted text clipped - 21 lines] > > So I don't like this at all.
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