Stacy1403
11-19-2007, 09:37 PM
When I was at the MS clinic this past May the neurologist put me on the steroid drug Prednisone for 20 days to help me get over a relapse I was having. I left with several refill prescription of Prednisone but I don't know when I should take the steroid. Obviously I don't want to take it if I don't have to. How bad should I be before I go on a steroid treatment. Should it only be a bad relapse or should you use it even for minor ones? I should say that my neurologist isn't available to me all of the time...I travel 7 hours to the Ms Clinic. I can try to get hold of them by phone, but I thought I would see if any of you have experience with this.
Thanks for any information you can give me.
Thanks for any information you can give me.
Sponsor
Bearygood
11-19-2007, 09:56 PM
Stacy, I don't but I'm sure others will have insight. I've never been on steroids and when I asked my specialist how will I know when/if I need to go to the ER, etc. (:eek:), he basically first said "you'll know" (a little scary, huh?) and then he added, "you call me". So, while I'm sure that others will be able to chime in, chances are that before filling a prescription, that's what you should do too! (I'm assuming there's a 24 hour answering service on their phone...)
Also, I know that sometimes people go on IV instead of pills so that's another reason to not take the plunge until you speak to your doctor -- I don't know in what scenarios one is used over the other.
In any event, let's hope that prescription stays in your house forever or if not, for a very, very, very long time! :)
Also, I know that sometimes people go on IV instead of pills so that's another reason to not take the plunge until you speak to your doctor -- I don't know in what scenarios one is used over the other.
In any event, let's hope that prescription stays in your house forever or if not, for a very, very, very long time! :)
hitdog042
11-19-2007, 10:08 PM
When I was at the MS clinic this past May the neurologist put me on the steroid drug Prednisone for 20 days to help me get over a relapse I was having. I left with several refill prescription of Prednisone but I don't know when I should take the steroid. Obviously I don't want to take it if I don't have to. How bad should I be before I go on a steroid treatment. Should it only be a bad relapse or should you use it even for minor ones? I should say that my neurologist isn't available to me all of the time...I travel 7 hours to the Ms Clinic. I can try to get hold of them by phone, but I thought I would see if any of you have experience with this.
Thanks for any information you can give me.
Its very possible the refills were a mistake by your doctor. I've been on prednisone twice and neither time did I have refills. I would seek your doctor out on this one.
Thanks for any information you can give me.
Its very possible the refills were a mistake by your doctor. I've been on prednisone twice and neither time did I have refills. I would seek your doctor out on this one.
MSNik
11-19-2007, 10:15 PM
Stacy, sorry you are feeling bad enough to consider steroids as an option. I will tell you that I have been given refills on my steroids pack, and I have filled it once or twice, but only after calling my doctor to be sure its the right thing to do.
Another thing you should be aware of, is the dose pack is really a very low dose of steroids...Im figuring you are taking anywhere between 5-50 mgs a day, with a taper down? Can you confirm that? When you do the IV, its 1000 mgs a day....so much higher, with so many more side effects. However, all steroids do have side effects, and they shouldnt be abused.
I really would call the doctors office, leave an urgent message and when you get ahold of the doc or even his nurse, explain your symtoms in detail- be able to discuss how long they have been happening and if they are changing. Make an informed decision based on their thoughts....if you cant be checked out, then its the next best thing. Do you have a local GP whom is familiar with your situation? Even he/she would be better then just self medicating- at least they can monitor you while you are on them. You need to be concerned about sugars elevating for one thing...usually they will do a simple glucose test on you when you are finished the round of steroids, if nothing else...but again, you are talking Prendisone pack...its not very high to begin with..
PLease try first to talk to your Neuro....you want to save Steroids for when it is absoutely necessary, and NOT abuse the idea of using them...like Bearygood said, you really do KNOW when things just are that bad! Continuous steroid use renders them less effective, and thus you need more and more of them to get the same effect....dont use them, unless you really think its time.
Good luck, and feel better soon.
Nikki
Another thing you should be aware of, is the dose pack is really a very low dose of steroids...Im figuring you are taking anywhere between 5-50 mgs a day, with a taper down? Can you confirm that? When you do the IV, its 1000 mgs a day....so much higher, with so many more side effects. However, all steroids do have side effects, and they shouldnt be abused.
I really would call the doctors office, leave an urgent message and when you get ahold of the doc or even his nurse, explain your symtoms in detail- be able to discuss how long they have been happening and if they are changing. Make an informed decision based on their thoughts....if you cant be checked out, then its the next best thing. Do you have a local GP whom is familiar with your situation? Even he/she would be better then just self medicating- at least they can monitor you while you are on them. You need to be concerned about sugars elevating for one thing...usually they will do a simple glucose test on you when you are finished the round of steroids, if nothing else...but again, you are talking Prendisone pack...its not very high to begin with..
PLease try first to talk to your Neuro....you want to save Steroids for when it is absoutely necessary, and NOT abuse the idea of using them...like Bearygood said, you really do KNOW when things just are that bad! Continuous steroid use renders them less effective, and thus you need more and more of them to get the same effect....dont use them, unless you really think its time.
Good luck, and feel better soon.
Nikki
mitch512u
11-20-2007, 10:41 AM
Stacy,
I just finished a round of prednisone a week ago, no refills on my Rx either. Does sound a bit odd.
Mitch
I just finished a round of prednisone a week ago, no refills on my Rx either. Does sound a bit odd.
Mitch
moore170
11-20-2007, 04:15 PM
I have never taken oral steroids because my neurologist said that if you have any vision problem that the oral drug could exacerbate that. I have taken IV solumedrol many times. For me the trick was to only get 500 mgs over an hour. This made the side effects minimal and the treatment did help. I would be cautious about refills.
Stacy1403
11-20-2007, 11:21 PM
Stacy, sorry you are feeling bad enough to consider steroids as an option. I will tell you that I have been given refills on my steroids pack, and I have filled it once or twice, but only after calling my doctor to be sure its the right thing to do.
Another thing you should be aware of, is the dose pack is really a very low dose of steroids...Im figuring you are taking anywhere between 5-50 mgs a day, with a taper down? Can you confirm that? When you do the IV, its 1000 mgs a day....so much higher, with so many more side effects. However, all steroids do have side effects, and they shouldnt be abused.
I really would call the doctors office, leave an urgent message and when you get ahold of the doc or even his nurse, explain your symtoms in detail- be able to discuss how long they have been happening and if they are changing. Make an informed decision based on their thoughts....if you cant be checked out, then its the next best thing. Do you have a local GP whom is familiar with your situation? Even he/she would be better then just self medicating- at least they can monitor you while you are on them. You need to be concerned about sugars elevating for one thing...usually they will do a simple glucose test on you when you are finished the round of steroids, if nothing else...but again, you are talking Prendisone pack...its not very high to begin with..
PLease try first to talk to your Neuro....you want to save Steroids for when it is absoutely necessary, and NOT abuse the idea of using them...like Bearygood said, you really do KNOW when things just are that bad! Continuous steroid use renders them less effective, and thus you need more and more of them to get the same effect....dont use them, unless you really think its time.
Good luck, and feel better soon.
Nikki
Thanks for all of your information Nikki and everyone that posted. The one time I took the Prednisone they actually wanted to do it by IV because of the high dose, but because I had travelled there they opted to put me on a pill form. I actually started doing 1250 mg for the first 5 days then went down to 60 mg for 5 more days and then started decreasing my dose by 10 mg every 3 days until I was done (20 days total). I was actually very hesitant to take Prednisone because of the side effects, however, in the end I was very glad I took that step that one time because it helped me get over that hurdle during that relapse. I understand the caution I must take when deciding whether or not to take Prednisone. I have a lot of trouble making those decisions sometimes. Shortly after my dx of MS and before I started my drug therapy (Avonex) I had a bad relapse. I didn't realize I was suppose to talk to the doctor when this happens...I thought there was nothing I could do about it, I wasn't very educated in my options at that time. I regret it now thinking it had something to do with some of my symptoms that do not go away (some gate problems, etc.). Now I think maybe if I took a steroid treatment when I was having that relapse I might not have some of that nerve damage. So for this reason I have trouble with that decision. But, I will try to contact my neurologist or at least my GP before making that decision because truthfully steroids scare me, but causing more damage scares me more. I too thought the refill thing was a little odd, but the reason they did that was for the same reason they asked me to fill the prescription for the first time at the MS Clinics pharmacy...she said because the pharmacist at any drug store would be shocked to see the high dose I was taking and they wouldn't know the proper dosing for me to take. This way if I did need to refill I had the right dose and instructions. Thankfully I have had very few relapses during the three years since being diagnosed. One at the very beginning and one this past spring. I recover fully for the most part, but I do have that gate problem that causes me to have a bit of a limp in my left leg that never fully recovers now. I will just keep hoping for the best and hope that it doen't get any worse.
Thanks, Stacy
Another thing you should be aware of, is the dose pack is really a very low dose of steroids...Im figuring you are taking anywhere between 5-50 mgs a day, with a taper down? Can you confirm that? When you do the IV, its 1000 mgs a day....so much higher, with so many more side effects. However, all steroids do have side effects, and they shouldnt be abused.
I really would call the doctors office, leave an urgent message and when you get ahold of the doc or even his nurse, explain your symtoms in detail- be able to discuss how long they have been happening and if they are changing. Make an informed decision based on their thoughts....if you cant be checked out, then its the next best thing. Do you have a local GP whom is familiar with your situation? Even he/she would be better then just self medicating- at least they can monitor you while you are on them. You need to be concerned about sugars elevating for one thing...usually they will do a simple glucose test on you when you are finished the round of steroids, if nothing else...but again, you are talking Prendisone pack...its not very high to begin with..
PLease try first to talk to your Neuro....you want to save Steroids for when it is absoutely necessary, and NOT abuse the idea of using them...like Bearygood said, you really do KNOW when things just are that bad! Continuous steroid use renders them less effective, and thus you need more and more of them to get the same effect....dont use them, unless you really think its time.
Good luck, and feel better soon.
Nikki
Thanks for all of your information Nikki and everyone that posted. The one time I took the Prednisone they actually wanted to do it by IV because of the high dose, but because I had travelled there they opted to put me on a pill form. I actually started doing 1250 mg for the first 5 days then went down to 60 mg for 5 more days and then started decreasing my dose by 10 mg every 3 days until I was done (20 days total). I was actually very hesitant to take Prednisone because of the side effects, however, in the end I was very glad I took that step that one time because it helped me get over that hurdle during that relapse. I understand the caution I must take when deciding whether or not to take Prednisone. I have a lot of trouble making those decisions sometimes. Shortly after my dx of MS and before I started my drug therapy (Avonex) I had a bad relapse. I didn't realize I was suppose to talk to the doctor when this happens...I thought there was nothing I could do about it, I wasn't very educated in my options at that time. I regret it now thinking it had something to do with some of my symptoms that do not go away (some gate problems, etc.). Now I think maybe if I took a steroid treatment when I was having that relapse I might not have some of that nerve damage. So for this reason I have trouble with that decision. But, I will try to contact my neurologist or at least my GP before making that decision because truthfully steroids scare me, but causing more damage scares me more. I too thought the refill thing was a little odd, but the reason they did that was for the same reason they asked me to fill the prescription for the first time at the MS Clinics pharmacy...she said because the pharmacist at any drug store would be shocked to see the high dose I was taking and they wouldn't know the proper dosing for me to take. This way if I did need to refill I had the right dose and instructions. Thankfully I have had very few relapses during the three years since being diagnosed. One at the very beginning and one this past spring. I recover fully for the most part, but I do have that gate problem that causes me to have a bit of a limp in my left leg that never fully recovers now. I will just keep hoping for the best and hope that it doen't get any worse.
Thanks, Stacy
MSNik
11-21-2007, 07:34 AM
Hey Stacy. Your explanation as to why the refills makes total sense, and the amount that you are taking just WOWs me! If you can handle that, you could handle the IV, trust me! ITs shorter, too....however, you do walk around with a tube in your arm for 4.5 days! I am lucky, Im able to get an infusion nurse to come to my home to start my infusions, I do the entire thing in the comfort of my home, but I also do go to work (with it tucked up under my shirt) and manage to "seem normal", even if I feel absoutely terrible.
Your concerns are valid. Steroids arent something to play with, but permenent damage isnt something to wait around and let happen. BEcause you seem overly cautious and because you have SUCH a high dose of steroids in that prescription, I would still see your Neuro or GP before starting this...just in case something does happen, you have some sort of reaction to this dose pack, someone should know what you are doing...I dont mean to scare you, and since you did it once before there is a very low chance of having anything go wrong, but still....someone neeeds to monitor you.
I wish you well....let us know how this turns out?
Hugs and happy holidays.
Nikki
Your concerns are valid. Steroids arent something to play with, but permenent damage isnt something to wait around and let happen. BEcause you seem overly cautious and because you have SUCH a high dose of steroids in that prescription, I would still see your Neuro or GP before starting this...just in case something does happen, you have some sort of reaction to this dose pack, someone should know what you are doing...I dont mean to scare you, and since you did it once before there is a very low chance of having anything go wrong, but still....someone neeeds to monitor you.
I wish you well....let us know how this turns out?
Hugs and happy holidays.
Nikki
Stacy1403
11-21-2007, 11:28 PM
Thanks for the information Nikki. I think I will talk to my neuro about an IV next time, if that time comes...hopefully that next time will never come. I hope you have a wonderful holiday as well.
Take Care,
Stacy
Take Care,
Stacy