Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Dear Don, I am not writing to give you advise on dealing with the joint pain while tapering off of Prednisone. I wish I did have advise. I am just writing to tell you " I hear you buddy " I am sorry that you have to go through this. I can't feel your pain, but I feel for you and so many others going through pred withdrawal. When I went through withdrawal, I didn't experience the joint pain, just the debilitating fatigue. I took the summer off from catering and laid low. I have PBC rather than AHI. I don't know if that is what made the difference or not. Have you spoken to Cazja or a rhuematologist about your pain? Give my best to Terri. Hope she is back at it and feeling good. Your web site is fabulous. I love her designs. Take care of yourself. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Don, I am currantly at 4mgs. and go to 3 next monday. It is tough, but I am determined. The doc put me on the neurontin and it does take the edge off. I am on 600mgs, three times a day. I am looking forward to the end. We can hang tough!!! GINGER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 hi, my name is rhodette. ive been reading all these e-mails and they sound so fimilar. i have hep c and cirosis and i am not on any drugs yet. i feel all these pains in my upper left arm and i am very stiff in the morning. iam going for my first biopsy in a week. as you can tell iam new to the group. i dont no what all the abbriviations for what everyones talking about. iam sure i'll find out soon. thanks for listing. rhodette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Don, When I fell down the stairs last Nov. The pain was sooo bad. My doc. gave me Vioxx. He said it was OK to take. I don't know if you've ever seen the commercial for it but it does say tell your doc. if you have liver problems. When I stopped the pred. I was very sore and almost stiff. It did ease over time. Not to say it has completely gone away. Just this morning I was favoring my right leg. I think after sleeping all night and jumping up and running so quickly in the morning my body doesn't have a chance to catch up. Have you tried stretching? It doesn't sound like a quick fix but I think we tend to favor the parts that hurt and wind up putting a strain on the good parts. I hope you feel better. Joan Claffey Don Hanson wrote: > > Part 1.1 Type: Plain Text (text/plain) > Encoding: 7bit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Dear Don, I have been pred-free for 18 months, weaning off over the course of a year and a half. I know what you are feeling, but trust me it will gradually go away. When I got down to around 3mg I even upped it on my own because of the misery. I remember thinking that this is what it's going to be like forever and now I can't honestly remember when it stopped. I am currently on 50mg of Imuran and although I still have all the other stuff that comes with AIH, I don't have any joint or muscle pain and my functions are in the normal range. So hang in there and whine all you want, it will get better. Peace and Love, Lynda -----Original Message-----From: Don Hanson [mailto:donhanson@...]Sent: Friday, September 29, 2000 10:48 AM egroupsSubject: [ ] My turn to whine... Many of you know that I've been tapering pred for over a year. I'm down to 3mg. The joint and muscle pain is almost intolerable. It's been increasing with each drop, but I've been determined to get down to 0. Has anyone else gone through this? Are there any pain meds that would help without hurting the liver?? Argh!!! I hate this!!!! Don Terradon Unlimited www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Don, Yes I went through this after transplant. my center decided to wean me off pred. after 2 years and it was a *itch!!!!!!!! Tylenol helped, but just don't use to excess as it does affect the liver. I was a hard process, but I have been pred. free now for 1 year today!!!!!!!! Hang in there Don, it will get better!!!! *SMILE* Lori C. [ ] My turn to whine... Many of you know that I've been tapering pred for over a year. I'm down to 3mg. The joint and muscle pain is almost intolerable. It's been increasing with each drop, but I've been determined to get down to 0. Has anyone else gone through this? Are there any pain meds that would help without hurting the liver?? Argh!!! I hate this!!!! Don Terradon Unlimited www.TerradonUnlimited.com " People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude " . Don Hanson 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Don, I am about where you are - 2mg/day. I think the pain is a big part of my depression right now. I try to rest all I can and take Tylenol. It doesn't really do a lot but helps some. I also take Ambien so I can sleep at night - I was getting very little sleep before the Ambien. My hep approved the Ambien and Tylenol as long as they are not in excessive amounts. I have been tapering the Prednisone at 1 mg every 2 months and really thought the pain would not be a big deal - but that's what I get for thinking!! Thinking of you, Mickie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Don, I been trying to taper off, but the gastroenterologist doesnt want me off because imuran is not an option for me...and I would then have nothing going for me. The imuran destroys white blood cells that fight off cancer, and since I had coloretal cancer...They are only letting me use actigall and prednisome.....at night my legs feel like they are jumping out of my body. I know this is wrong, but lately I have been taking only 5mg...suppose to take 7mg, because I am afraid the prednisome will cripple me in the long run. 3 mg of prednisome is pretty good. Are you taking the calcium? lydia 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Don, I'm sorry you are suffering from so much pain at the moment. I've been tapering Pred aswell and now I am at 5mg/2,5 mg the other day...still feel no pain, just very tired again. I too want to get off this stuff. Hang in there Don, you will make it!! Sylvana -----Original Message-----From: Don Hanson [mailto:donhanson@...]Sent: vrijdag 29 september 2000 16:48 egroupsSubject: [ ] My turn to whine... Many of you know that I've been tapering pred for over a year. I'm down to 3mg. The joint and muscle pain is almost intolerable. It's been increasing with each drop, but I've been determined to get down to 0. Has anyone else gone through this? Are there any pain meds that would help without hurting the liver?? Argh!!! I hate this!!!! Don Terradon Unlimited www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hang in there Don! Loes THe Netherlands [ ] My turn to whine... Many of you know that I've been tapering pred for over a year. I'm down to 3mg. The joint and muscle pain is almost intolerable. It's been increasing with each drop, but I've been determined to get down to 0. Has anyone else gone through this? Are there any pain meds that would help without hurting the liver?? Argh!!! I hate this!!!! Don Terradon Unlimited www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Lydia, No, I'm taking calcium anymore, but I get quite a bit in milk, etc. I had a bone density done a year ago, and I was well within the normal range. My understanding is that pred is not particularly "dangerous" at doses below 10mg. Your body produces 7.5mg on average. So, in your case, I would stick with the dosage that keeps your liver panels within range. The danger from the liver damage is much greater than the dangers from pred. I was on 40mg for several years and actually was as high as 100mg for a few months! Don Terradon Unlimited www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: solclaro@... [mailto:solclaro@...]Sent: Friday, September 29, 2000 5:14 PM egroupsSubject: Re: [ ] My turn to whine...Don,I been trying to taper off, but the gastroenterologist doesnt want me off because imuran is not an option for me...and I would then have nothing going for me. The imuran destroys white blood cells that fight off cancer, and since I had coloretal cancer...They are only letting me use actigall and prednisome.....at night my legs feel like they are jumping out of my body. I know this is wrong, but lately I have been taking only 5mg...suppose to take 7mg, because I am afraid the prednisome will cripple me in the long run. 3 mg of prednisome is pretty good. Are you taking the calcium?lydia 2 Quote Link to comment Share on other sites More sharing options...
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