I just posted to Jeff on the "Give Up" thread....a question pertaining to prednisone. It seems Jeff and I have had this ongoing debate on the use of steroids...he swears I should be on a maintenance dose and I could control my Lupus pain and back/leg pain w/o pills.....my Drs. feel this is very bad medicine...that the long term use will cause more problems. I already have the beginnings of oseoporosis and am highly susceptible to infection. I have had Lupus for 15-20 years and have been on MANY meds. Jeff is so insistent and I would like to hear from someone with facts so I don't blow him off out of ignorance on my part......I personally feel it shoud be used for emergencies....any medical folks out there?Sharonn
sharon..........i feel that steroids should be used sparingly..........
your doctor sees you, your body, your lab work and your vital signs.........
your doctor is familure with you and your body........
and he puts all this together for the best plan of care for you..........
so just follow your doctors advice ........
jeffery has a heart of gold, he wants to help so badly and the only way he can relate is through his own experience............which has been terrible..
he sufers to and i just love our jeffery.
i just feel that you should follow your doctors advice and plan of care and if its not working, you can find another doctor............
LOve you !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
thumper
your doctor sees you, your body, your lab work and your vital signs.........
your doctor is familure with you and your body........
and he puts all this together for the best plan of care for you..........
so just follow your doctors advice ........
jeffery has a heart of gold, he wants to help so badly and the only way he can relate is through his own experience............which has been terrible..
he sufers to and i just love our jeffery.
i just feel that you should follow your doctors advice and plan of care and if its not working, you can find another doctor............
LOve you !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
thumper
Thank you my dear...how are you feeling these days?
I think your doctors, the ones with the medical degrees, who see you on a regular basis, are far more qualified to make decisions regarding your health care than anyone else. After all, that is what you pay them for, right? What works for one won't work for all.
I'm with Atlas...stick with your drs Sharonn. Everyone is different. What works for Jeff might not work for you.....
Sharon I am not a doctor. You mentioned in the past that prednisone helped your pain? Or maybe I misunderstood.
All i am saying is if its the side effects your afraid of? You need to choose. Your life today seems to be in a opiate limbo.
If prednisone is going to put your life in danger then NO of course. Is it bad medicine? Of course.
But it keeps me alive. For you Sharon i have no idea if prednisone is for you.
Do you not have specialist for your diseases? They would tell you the pros and cons of steroids.
Sharon I think I may be confused. Are you not struggling with Opiates? If yes and prednisone can get you off them and the dose is a low one --
(EVERY OTHER Day dose WOULD BE THE SAFEST--IFAILED AT WEANING
EVERY OTHER DAY DOSE WOULD ENABLE YOU TO DEAL WITH THE SIDE EFFECTS AS THEY ARE NOT AS INTENSE AND THE EVERY OTHER DAY DOSE JUST MAY BE WHAT COULD HELP YOU AND NOT CAUSE YOU MAJOR RISK REGARDING THE LUPUS.
SHARON WARM WEATHER HAVCE YOU EVER TRIED SPENDING A YEAR IN THE DESERT OR Florida?
THA WARM WEATHER HELPS ANYBODY L IKE YOU AND ME--THATS A GIVEN.
SPEAKING OF WHICH iPOD IS CHARGED SUNDAY [PAPER AND SUN IS AWAITING ME.
SHARON this is no debate. Its facts about a bad medicine that I must take. I read your story 18 months ago and its bugged me ever since that your doctors have not helped you and your on these stinkin pills.
Sharon Opiates for me besides barbiturates are the nastiest suckers to get off of.
I pray you figure away to improve your quality of life--No debate just a wish.
And one other thing have you been to more than one specialist? Always have a second opinion.
Later
All i am saying is if its the side effects your afraid of? You need to choose. Your life today seems to be in a opiate limbo.
If prednisone is going to put your life in danger then NO of course. Is it bad medicine? Of course.
But it keeps me alive. For you Sharon i have no idea if prednisone is for you.
Do you not have specialist for your diseases? They would tell you the pros and cons of steroids.
Sharon I think I may be confused. Are you not struggling with Opiates? If yes and prednisone can get you off them and the dose is a low one --
(EVERY OTHER Day dose WOULD BE THE SAFEST--IFAILED AT WEANING
EVERY OTHER DAY DOSE WOULD ENABLE YOU TO DEAL WITH THE SIDE EFFECTS AS THEY ARE NOT AS INTENSE AND THE EVERY OTHER DAY DOSE JUST MAY BE WHAT COULD HELP YOU AND NOT CAUSE YOU MAJOR RISK REGARDING THE LUPUS.
SHARON WARM WEATHER HAVCE YOU EVER TRIED SPENDING A YEAR IN THE DESERT OR Florida?
THA WARM WEATHER HELPS ANYBODY L IKE YOU AND ME--THATS A GIVEN.
SPEAKING OF WHICH iPOD IS CHARGED SUNDAY [PAPER AND SUN IS AWAITING ME.
SHARON this is no debate. Its facts about a bad medicine that I must take. I read your story 18 months ago and its bugged me ever since that your doctors have not helped you and your on these stinkin pills.
Sharon Opiates for me besides barbiturates are the nastiest suckers to get off of.
I pray you figure away to improve your quality of life--No debate just a wish.
And one other thing have you been to more than one specialist? Always have a second opinion.
Later
In your case I think a second opinion from a specialist would be warranted. Steroids do have unwanted side effects but if you already have been on a slew of medications then intermittent or long use of steroids is just another option.
Lisa my point. Sharon's doctor put her on prednisone and obviously the reason is the prednisone must help her.
Yea getting off the stuff as its poison yea. But I f Sharon happens to be like me where prednisone is the only drug that enables her to live life without OPIATES?
That is a question for Sharon and a specialist. That's all I was trying to say.
I have never told her to do anything like I know her case. I just base it all on what SHE posts I read and share
I read her current situation and its been going on for a long time?
Jeff
Yea getting off the stuff as its poison yea. But I f Sharon happens to be like me where prednisone is the only drug that enables her to live life without OPIATES?
That is a question for Sharon and a specialist. That's all I was trying to say.
I have never told her to do anything like I know her case. I just base it all on what SHE posts I read and share
I read her current situation and its been going on for a long time?
Jeff
I wasn't questioning you Jeff, I just said that what works for you might not work for her. This shouldn't be a debate, just questions for her dr.
Have a good day.
Have a good day.
I know you were not questioning me I am trying to explain myself. Its never personal.
She is posted on and off and prednisone is a drug that helped her. Can she get on it every other day low doses and get off opiates.
I do not know what Sharon has had for doctors. I share my story based on the best medical care $$can afford.
Many doctors are hesitant to prescribe prednisone. Example do you remember when i got fired from my Primary?
He fired me cause he did not want the responsibility of my prednisone and its side effects for Liability as well as all the testing. The more tests he orders the less money he makes from the HMO
Anyway I made my point and i hope Sharon figures something out cause opiates are not the answer.
Jeff
She is posted on and off and prednisone is a drug that helped her. Can she get on it every other day low doses and get off opiates.
I do not know what Sharon has had for doctors. I share my story based on the best medical care $$can afford.
Many doctors are hesitant to prescribe prednisone. Example do you remember when i got fired from my Primary?
He fired me cause he did not want the responsibility of my prednisone and its side effects for Liability as well as all the testing. The more tests he orders the less money he makes from the HMO
Anyway I made my point and i hope Sharon figures something out cause opiates are not the answer.
Jeff
sharon, i worked with 2 guys who SWEAR,SWEAR,SWEAR that prednosone really fu^ked them up for life. stick with the dr. good luck
usualy i can tell by someones skin..........
i will ask , do you take predisone?
YEP.......
i have never heard ....no
it makes your skin so thin..........
jeffery is your skin thin?
i will ask , do you take predisone?
YEP.......
i have never heard ....no
it makes your skin so thin..........
jeffery is your skin thin?
Prednisone is a VERY serious drug, that can have very serious consequences after long term use. It affects every body system, is almost as bad to taper off of as these drugs that we all have become addicted to. Not because it has addictive properties, but because it takes a toll on your entire system. Because prednisone is taken orally it works throughout your body - long term use (and even short term use) can cause increasese in blood glucose, immunosuppression (lack of resistance to infection), can induce psychosis, and a number of other things. There is no doubt that it has positive effects on pain and inflammation, and I understand, Jeff, why you have chosen to use it, but like others, I would recommend Sharonn that you work closely with your doctor and go with your instincts and his recommendations.
The other options is localized steroid use, if there is a certain place in your body that has a specific injury that would respond to steroid treatment, you can get injections in that area that don't have the same systemic effect as oral prednisone.
Those are just my thoughts... I may be biased because I have huge reservations regarding long terms and widespread use of steroids.
If you have anymore questions or thoughts, please let us know...
Bridget
The other options is localized steroid use, if there is a certain place in your body that has a specific injury that would respond to steroid treatment, you can get injections in that area that don't have the same systemic effect as oral prednisone.
Those are just my thoughts... I may be biased because I have huge reservations regarding long terms and widespread use of steroids.
If you have anymore questions or thoughts, please let us know...
Bridget
Allright....I do agree that steroids do more long term damge than opiates...I might get blasted for this but oxycodone w/o tylenol to screw up your liver when taken AS RXED is safer than prednisone long term. The obvious downside is tolerance and addiction...and of course abuse which can lead to death. But given those 2 choices..I would choose opiates over steroid therapy. With all due repect jeff...I just can't pack up and move south...Tony's job is in NY and he supports me....the humidity and heat is bad for Lupus. I cannot be out in the sun...so why move south?I know you are trying to help but I have to agree to disagree with you wholeheartedly on this. No offense LOL but you'd think you work for a drug company that pushes pred.....it's a joke Jeff. I will find my way...life isn't perfect and I will do what I always do...my best. Sharonn
Both my mother and Grandmother have had long term effects from too much prednisone. I wouldn't take it. But that's just my opinion, I don't know how I would feel if I were faced with long term pain....Sharonn honey, bottom line here? Stop defending yourself. Trust your drs, your gut and God. Love, Lisa
thanks....S
I don't think its a yes/no option. Like a lot of treatments for SLE it comes with its positives and downsides. Speak with your endocrinologist/rheumatologist who knows your particular history. Weigh up the short and long term consequences and make a decision that takes into account other problems that impact on your quality of life and long-term health (eg addiction). You can take it for short periods, or stay on it for longer term therapy.
As long as you are well informed, at the end of the day yu just have to make a personal decision.
As long as you are well informed, at the end of the day yu just have to make a personal decision.
Sharonn,I have had Lupus for 5 years. And I can tell you Prednisone works great but the side effects are horriable. At least for me. I am down to 5mg a day and would like to get off completly. I can't seem to get lower than 5mg. I know some people can tolerate more and for long periods,but for me I want off. The long term affects are bone loss even if you take suppliments. There are more side effects the list goes on and on. I have been on Methotrexate Inj.Plaquinil,Arava and now trying me on Imuron. I have not had much relief from prev. meds. I take Vicodin ES one daily most days. But I have a addictive personality and it worries me about Vicodin use daily. In the past I would of felt like party time if I have Vic's or anything. But now having to use for legit pain sucks. Please write back It is nice to speak with someone with the same type of illness. Lisa
Lisa....first let me say how sorry I am that you have had to bear all the pain of Lupus...I know all about Plaquenil...Methotrexate....and prednisone. My BIL takes Methotrexate and looks like death warmed over....plaquenil works great for some....not for me. As far as the vicodin it doesn't sound as if a pill a day would do much as far as pain (or in the worry of abusing it)It is hard to find a regimen that works for you. Nutrition and stress reduction are very important. So is rest. I am in bed at 8 every night...in my pajamas with a book or the tv on....no housework, etc. at night. Thank God for the most part I sleep around 8 hours a night. I have struggled with the pain pills and also have had back surgeries so I am well acquainted withdaily pain. This may sound simplistic but your attitude is so important...you must remain positive. Lupus can cause depression.One of the reasons I don't like prednisone is the mood swings...I am already predisposed to depression genetically so I don't need to push that envelope...how is your daily pain level? Can you work? I no longer have any party mentality re:pain meds.That ship has sailed long ago. I just want to feel functional in my life and not like a "sick person". If I did not have back problems I would work full time for my mental health...it is not good to be stuck at home.Even volunteer work is rewarding. Feel free to call on me anytime. I hope you feel better...Sharonn
EVREYTHING anybody said about Prednisone you did not even hit the tip of it.
ITS POISON its KILLING me. I know this. BUT for me its the only medicine that enables me to LIVE?
For me its a no brainer. I rather live today. Who knows what the future will bring.
But I made changes. Depression to me is sitting in a house watching your life waste away. The bottom line a person who suffers from chronic diseases needs to decide the type of life they want to live. Opiates are no answer for chronic pain for me. They have worse side effects for me. I am amazed how rough opiates can be to come off of after meeting a lot of people here on this board.
I would use Prednisone as a LAST measure. The question is do you take the lowest amount of a poison enabling you to have a manageable day of pain--able to work--not depressed etc etc.
The answer is personal-each of us have our beds and must sleep in them.
I only throwout prednisone to Sharon as I thought she said it helped her but the side effects were not worth it. Also the heat is so important. Cold weather is a killer. Again for Sharon Moving from N.Y is not in her cards. Like i said were all different.
Look up the drug check the side effects I have them all. But you can fight a lot of them.
To the person on 5mg a day I can only tell you that dose does not cause much of a danger as per all the dozens of experts tell me.
But I am not familiar with your whole case. Are your adrenal glands functioning?
Mine do not. This is my biggest problem.
I have really tried to focus on the positive of what prednisone allows me to do and try so hard not to project what the drug is doing to me.
I went 2006 first time no surgeries --I get infections and fight them off.
This past month has been difficult. I got real sick and was forced to BOOST big time well now am down to 15 mg --and the W/D is hard to explain.
(NOT VERY ENJOYABLE) again you get used to doing it.
Jeff
ITS POISON its KILLING me. I know this. BUT for me its the only medicine that enables me to LIVE?
For me its a no brainer. I rather live today. Who knows what the future will bring.
But I made changes. Depression to me is sitting in a house watching your life waste away. The bottom line a person who suffers from chronic diseases needs to decide the type of life they want to live. Opiates are no answer for chronic pain for me. They have worse side effects for me. I am amazed how rough opiates can be to come off of after meeting a lot of people here on this board.
I would use Prednisone as a LAST measure. The question is do you take the lowest amount of a poison enabling you to have a manageable day of pain--able to work--not depressed etc etc.
The answer is personal-each of us have our beds and must sleep in them.
I only throwout prednisone to Sharon as I thought she said it helped her but the side effects were not worth it. Also the heat is so important. Cold weather is a killer. Again for Sharon Moving from N.Y is not in her cards. Like i said were all different.
Look up the drug check the side effects I have them all. But you can fight a lot of them.
To the person on 5mg a day I can only tell you that dose does not cause much of a danger as per all the dozens of experts tell me.
But I am not familiar with your whole case. Are your adrenal glands functioning?
Mine do not. This is my biggest problem.
I have really tried to focus on the positive of what prednisone allows me to do and try so hard not to project what the drug is doing to me.
I went 2006 first time no surgeries --I get infections and fight them off.
This past month has been difficult. I got real sick and was forced to BOOST big time well now am down to 15 mg --and the W/D is hard to explain.
(NOT VERY ENJOYABLE) again you get used to doing it.
Jeff
