Aa
Isn't something btter than nothing?
I am looking for as much info as I can find about Predisone. I was dxed Sept. 2002. I do not take any injection, my own choice. I would like to be on a low dose of Predisone 5 -10 mg a day. I was wondering if anyone else does this? That low of a dose makes me feel like Wonder Woman! lol But, since it isnt "text book" for MS my doctors are hesitant to put me on it. I even offered to do blood work & bone density scan before treatment & then again in 6 months to see if there is any damage. I can still walk, I use a cane, looking at getting a walker & scooter for longer distantces. I deal with pain, fatiuge, & vertigo (among other annoying issues). Any information is greatlly appreciated! Thank you! :)
Thank you all for your information! I do not do needles & will not be taking the injections. The pill form, is on FDA fast track & will be available by late 2011. ( I will look for the magazine I found this info in & post it)
And I know the injections dont make you crazy. lol If it did, there would be alot more insane people in this world! That doctor was an idiot!
I have tried all the medications for fatiuge. My pain is managable but, being tired all the time *****. Predisone is the only thing that I have found that makes me feel like me again. My thyroid is find & Im not anemic. I have changed my diet & life style. I am just at wits end to find some energy when I need it most!
And I know the injections dont make you crazy. lol If it did, there would be alot more insane people in this world! That doctor was an idiot!
I have tried all the medications for fatiuge. My pain is managable but, being tired all the time *****. Predisone is the only thing that I have found that makes me feel like me again. My thyroid is find & Im not anemic. I have changed my diet & life style. I am just at wits end to find some energy when I need it most!
Sorry, what I said was a bit confusing about Solumedrol infusions. I meant to say that my neuro doesn't like the once per month infusion treatment; he does prescribe the standard 1000mg for 3 - 5 days regimen to treat active relapses which are moderate to severe in terms of symptoms.
Something is not necessarily better than nothing if the risks of that something outweigh the benefits.
When I visited the Partners MS Center in Boston at B&G Hospital last year, I learned from them that some MS pts seem to benefit from once per month infusions of Solumedrol. I have come across some studies on this; I think the jury is still out on the long term effectiveness (and long term risks) but it seems to be not an uncommon practice at that clinic. Mine own neuro here in Canada doesn't like it and doesn't prescribe it. Perhaps this is an alternative for you to consider, as opposed to long term low dose oral prednisone. I don't understand all the reasons why, but the continuous use of oral prednisone apparently is much riskier than those one a month high dose boosts. Then again, if you are opposed to any kind of injection, this probably doesn't help you much.
Come to think of it, isn't our Dr. Quix on the aforementioned regimen?
Anecdotally, I will share that a good friend of mine who is a nurse on a cardiac care unit told me that the surgeons can always tell which pts have been using oral steroids long term, by the condition of their insides. Apparently it breaks down tissue significantly, and when the docs are sewing up the veins and arteries and heart or whatever it is they do, they have to be very delicate, as the tissue in these pts is so damaged it can literally just disintegrate in their hands during surgery. Does not sound real pleasant and I think this is only one of a long list of concerns with these meds.
If you are concerned about side effects of DMD's, hopefully it is reassuring to you to know that I, like Lulu, have also had no side effects from Copaxone other than the mild and brief sting from the medication. The needle itself is so darn thin, I swear I do not feel it going in at all. It has not robbed me of quality of life in the least; just the opposite actually.
I hope you find the replies you receive to be helpful, as you decide on the best course of action for you.
When I visited the Partners MS Center in Boston at B&G Hospital last year, I learned from them that some MS pts seem to benefit from once per month infusions of Solumedrol. I have come across some studies on this; I think the jury is still out on the long term effectiveness (and long term risks) but it seems to be not an uncommon practice at that clinic. Mine own neuro here in Canada doesn't like it and doesn't prescribe it. Perhaps this is an alternative for you to consider, as opposed to long term low dose oral prednisone. I don't understand all the reasons why, but the continuous use of oral prednisone apparently is much riskier than those one a month high dose boosts. Then again, if you are opposed to any kind of injection, this probably doesn't help you much.
Come to think of it, isn't our Dr. Quix on the aforementioned regimen?
Anecdotally, I will share that a good friend of mine who is a nurse on a cardiac care unit told me that the surgeons can always tell which pts have been using oral steroids long term, by the condition of their insides. Apparently it breaks down tissue significantly, and when the docs are sewing up the veins and arteries and heart or whatever it is they do, they have to be very delicate, as the tissue in these pts is so damaged it can literally just disintegrate in their hands during surgery. Does not sound real pleasant and I think this is only one of a long list of concerns with these meds.
If you are concerned about side effects of DMD's, hopefully it is reassuring to you to know that I, like Lulu, have also had no side effects from Copaxone other than the mild and brief sting from the medication. The needle itself is so darn thin, I swear I do not feel it going in at all. It has not robbed me of quality of life in the least; just the opposite actually.
I hope you find the replies you receive to be helpful, as you decide on the best course of action for you.
Hi,
When it was thought that I had Sjogren's Syndrome instead of the MS I do have, I was treated with low dose (5mg) prednisone daily. I was on it for 2 years. I was followed with bone density studies, CBC to check white counts and by my BP doc who is a nephrologist. When I expressed concern to him about the long term use, he said it would improve MY kidney function(I do not if that is true for everyone) and that he had numerous kidney transplant patients do well on this low dose. I was using it for hip pain and stubborn case of excema.
It is now clear that the hip pain was due to weak hip flexors due to leg weakness, etc from MS and not properly diagnosed by my old rheumatologist. When the Sjorgrens was ruled out I tapered off and did fine BUT this MY experience and do not advocate taking this as a rule. I just wanted to share my experience.
Ess makes some very valid points about this drug and it not to be taken lightly. Yes, you feel better but to what damage to your body long term? Prednisone affects all of your body functions including renal function, decreasing your WBC, fluid rentention, bone density and the possiblity of avascular necrosis to your hip joint necessitating hip joint replacement, changes in your immune system, as well as elevations in blood sugar levels which could lead to diabetes, etc.
I am now taking Copaxone. It causes no side effects, short of the transient sting of the drug. Despite my experience with the prednisone, I would still use a DMD to try to prevent further relapses which is something prednisone cannot do.
I wish you insight in making this important decision that may affect your quality of life down the road.
And as Lulu, said, we're here no matter what you decide.
Warmly,
Ren
When it was thought that I had Sjogren's Syndrome instead of the MS I do have, I was treated with low dose (5mg) prednisone daily. I was on it for 2 years. I was followed with bone density studies, CBC to check white counts and by my BP doc who is a nephrologist. When I expressed concern to him about the long term use, he said it would improve MY kidney function(I do not if that is true for everyone) and that he had numerous kidney transplant patients do well on this low dose. I was using it for hip pain and stubborn case of excema.
It is now clear that the hip pain was due to weak hip flexors due to leg weakness, etc from MS and not properly diagnosed by my old rheumatologist. When the Sjorgrens was ruled out I tapered off and did fine BUT this MY experience and do not advocate taking this as a rule. I just wanted to share my experience.
Ess makes some very valid points about this drug and it not to be taken lightly. Yes, you feel better but to what damage to your body long term? Prednisone affects all of your body functions including renal function, decreasing your WBC, fluid rentention, bone density and the possiblity of avascular necrosis to your hip joint necessitating hip joint replacement, changes in your immune system, as well as elevations in blood sugar levels which could lead to diabetes, etc.
I am now taking Copaxone. It causes no side effects, short of the transient sting of the drug. Despite my experience with the prednisone, I would still use a DMD to try to prevent further relapses which is something prednisone cannot do.
I wish you insight in making this important decision that may affect your quality of life down the road.
And as Lulu, said, we're here no matter what you decide.
Warmly,
Ren
Michele_R,
Hi again - I went back and reread your posts from the springtime. It sounds like your MS is changing - and I sure am sorry to hear that.
I understand you don't want to do injections - what you say you were originally told is all wrong. You won't go crazy taking the injections. Since you have a history of depression, there is one DMD copaxone, which definitely does not have that side effect.
You say you will be first in line for the oral DMD's when they become available ... that is still several years away. Even the most promising of these drugs are only in Phase III of the studies and have many hurdles to go over, around and through before they will be approved by the FDA.
Until that time, please go back and talk this over with a good MS neurologist and get a clear picture of what you are risking by not taking any DMD now. With the changes in your symptoms, you may want to reconsider your options.
Prednisone is only to help with the symptoms and as Ess says, long term extended use is not a good choice.
Please stay in touch - whatever you decide we're here for you.
be well
Lulu
Hi again - I went back and reread your posts from the springtime. It sounds like your MS is changing - and I sure am sorry to hear that.
I understand you don't want to do injections - what you say you were originally told is all wrong. You won't go crazy taking the injections. Since you have a history of depression, there is one DMD copaxone, which definitely does not have that side effect.
You say you will be first in line for the oral DMD's when they become available ... that is still several years away. Even the most promising of these drugs are only in Phase III of the studies and have many hurdles to go over, around and through before they will be approved by the FDA.
Until that time, please go back and talk this over with a good MS neurologist and get a clear picture of what you are risking by not taking any DMD now. With the changes in your symptoms, you may want to reconsider your options.
Prednisone is only to help with the symptoms and as Ess says, long term extended use is not a good choice.
Please stay in touch - whatever you decide we're here for you.
be well
Lulu
I'm not sure what you mean by 'What is the difference from the steroid in Predisone compared to the ones in the injections?'
I think we might be talking about 2 different kinds of injections. The DMDs for MS have no steroids in them at all, and that's not their purpose. Injectable steroids are actually infused using an IV. They are much stronger than any steroid in pill form.
I hope you won't continue to try to control your symptoms by constant use of Prednisone. That is unhealthy and dangerous.
Sending best wishes,
ess
I think we might be talking about 2 different kinds of injections. The DMDs for MS have no steroids in them at all, and that's not their purpose. Injectable steroids are actually infused using an IV. They are much stronger than any steroid in pill form.
I hope you won't continue to try to control your symptoms by constant use of Prednisone. That is unhealthy and dangerous.
Sending best wishes,
ess
hey I understand exactly how you feel, I asked for the same thing...since I have PPMS I though a lower dose of Prednisone might help with pain, off balance, leg weakness etc.. I was told NO... it's not a good thing to be on... and that was the end of the discussion??
I know it's not good for you to be on it along time, someone in my family is on it for RA and takes it daily in lower doses... but need to go off it at times too.
I don't know...guess we must wait and see.. what does your Dr say about it?? why not?
wobbly
dx
I know it's not good for you to be on it along time, someone in my family is on it for RA and takes it daily in lower doses... but need to go off it at times too.
I don't know...guess we must wait and see.. what does your Dr say about it?? why not?
wobbly
dx
What is the difference from the steroid in Predisone compared to the ones in the injections? I know certain types of arthrituts are treated with long term Predisone 20mg or more a day. My pain keeps me from being active. I understand the pro's & con's of the injections as far as MS progress. When pill form comes out in late 2011 I will be 1st in line for it! lol But, for now, I just want to enjoy my quality of life while I still have it. I have a 6 yr old step son & want to be more involved with him. His biological mother is a train wreck & I am more of a mother to him. Other pain meds just make me all loopy & tired.
I think it's not at all wise to be on a permanent, even if low, dose of steroids. Bone loss is one possible problem. Your immune system may get really fouled up, you can gain a lot of weight, and so on. So personally I'd never do this. You are getting no protection from MS but are continually treating the symptoms. One of the injectables is a much better option, in my opinion.
I'm sure you'll hear from others here.
ess
I'm sure you'll hear from others here.
ess
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