Aa
Hey friends
So my apt was yesterday after all and was told I have 7 lesions and I've have had it for about 8 years now. They put me on 200mg of prednisone a day for a week and 4 every other day for 3 weeks. I've been feeling a lot better without meds and just started taking today. Should I worry about the side effects?.. He said I have mild ms I'm worried.... Thanks guys.
I can only add you've got great supportive advice posted above, and I too am sorry you're dealing with this. Better to be out of limbo land though.
I say "When you know what you're fighting, you can gather the right ammo!".
Take care,
C
I say "When you know what you're fighting, you can gather the right ammo!".
Take care,
C
I'm so sorry you have MS Matt. I hope you can start a DMD sooner rather than later. I hope the oral pred helps in some way. You have found the most kind & knowledgeable group of people I know of on this forum so ask anything you may be unsure of.
It can be a bit of an emotional time in the first year of dx so try to be kind to yourself.
Take care,
Karry.
It can be a bit of an emotional time in the first year of dx so try to be kind to yourself.
Take care,
Karry.
I agree with Kyle (as do most good neuros) - having MS is like being pregnant. Yes or no. End of story. Early treatment with a DMD is essential.
Matt, I'm sorry you have MS, but now you know what you're dealing with, here. Be good and kind to yourself. I know when I was first diagnosed, I was relieved to know why I felt all the weird things I did, and still do. When I got my first Rebif kit a couple weeks later, I finally cried. It was real. Five years later, I've progressed only a little, and I'm still a fun hog! Good days, bad days.
Matt, I'm sorry you have MS, but now you know what you're dealing with, here. Be good and kind to yourself. I know when I was first diagnosed, I was relieved to know why I felt all the weird things I did, and still do. When I got my first Rebif kit a couple weeks later, I finally cried. It was real. Five years later, I've progressed only a little, and I'm still a fun hog! Good days, bad days.
It seems the standard IVSM (methylprednisolone sodium succinate) dose is 1000mg/day, the equivalent oral prednisone/prednisolone does would be 1250mg/day. matt's 200mg/day dose is about 16% of that.
I guess it depends on the severity of the relapse but it hardly seems worth it.
Kyle
I guess it depends on the severity of the relapse but it hardly seems worth it.
Kyle
Good point, Penina. I had always assumed they were equivalent, so I decided to check this out, at
http://www.globalrph.com/steroid.cgi
This site has a corticosteroid equivalency converter (and maybe other interesting stuff I haven't looked at yet). The results:
1000 mg of Prednisone = 800 mg of Methylprednisolone, which is IV Solumedrol. If just considering Prednisolone, it's the same dosage as Prednisone, so I guess the Methyl in the IV makes the difference.
Anyway you look at it, though, these things are all very potent, and not to be messed with.
ess
http://www.globalrph.com/steroid.cgi
This site has a corticosteroid equivalency converter (and maybe other interesting stuff I haven't looked at yet). The results:
1000 mg of Prednisone = 800 mg of Methylprednisolone, which is IV Solumedrol. If just considering Prednisolone, it's the same dosage as Prednisone, so I guess the Methyl in the IV makes the difference.
Anyway you look at it, though, these things are all very potent, and not to be messed with.
ess
Just a comment....I am not sure that mg per mg, you can compare doses of SoluMedrol IV to oral Prednisone...
A lot of info coming your way in a short time but I have to reiterate understanding more about MS and the drug they are prescribing, the side effects are typically mild but information about a drug you will be taking for the long term is appointment.
Please keep your second appointment, that neuro may be more forthcoming with information.
On a side note, I also don't like the term mild when it comes to MS. My neuro suggested that to me prior to my diagnosis and said I probably wouldn't need treatment. When he saw the amount of bands and inflammation in my spinal tap results, gave me the MS diagnosis and never mentioned he mild again. Then he asked me what treatment I wanted. :-)
I have never done the steroids but only because MS wasnt on the table when I had my "big" relapse.
Good luck,
Corrie
Please keep your second appointment, that neuro may be more forthcoming with information.
On a side note, I also don't like the term mild when it comes to MS. My neuro suggested that to me prior to my diagnosis and said I probably wouldn't need treatment. When he saw the amount of bands and inflammation in my spinal tap results, gave me the MS diagnosis and never mentioned he mild again. Then he asked me what treatment I wanted. :-)
I have never done the steroids but only because MS wasnt on the table when I had my "big" relapse.
Good luck,
Corrie
Agree, get the 2nd opinion and educate yourself. There is power in both knowledge and positive thinking. Best wishes!
Allow me to officially welcome you to The Club :-)
Now that you know what you're fighting, you should be able to focus your energy. I agree that the steroid dose sounds strange. During my last relapse I got 1000mg/day via IV for 5 days. Then I had an oral taper.
I also have a problem with the mild label. Having MS is binary; either you have it or you don't. Many of us are fortunate to be minimally effected at present. This doesn't mean that tomorrow is a different story.
GIven that the second appointment is only a week away, I'd keep it. I would also let the doc do the talking. I wouldn't mention what Neuro #1 said.
I'm glad your picture is becoming a little more clear :-)
Kyle
Now that you know what you're fighting, you should be able to focus your energy. I agree that the steroid dose sounds strange. During my last relapse I got 1000mg/day via IV for 5 days. Then I had an oral taper.
I also have a problem with the mild label. Having MS is binary; either you have it or you don't. Many of us are fortunate to be minimally effected at present. This doesn't mean that tomorrow is a different story.
GIven that the second appointment is only a week away, I'd keep it. I would also let the doc do the talking. I wouldn't mention what Neuro #1 said.
I'm glad your picture is becoming a little more clear :-)
Kyle
Actually, it's not really a low dose of prednisone - it's a pretty high dose. You should be OK on it. A lot of people feel better with it. My rheumatologist put me on a much lower dose than you're on. I guess you'll just have to wait and see how your body responds. Hope it goes well and glad that you're getting some answers.
Hang in there,
Kelly
Hang in there,
Kelly
Well, taking quite a low dose of prednisone shouldn't hurt anything, and it does have the likelihood of low side effects. I'm just concerned as to whether it will do any good. I don't know your symptoms or how bad they are, and even more important, how your own body reacts to meds. Have you ever had steroids before? It does sound as if the doctor is only tiptoeing.
Last spring I was prescribed 3 days of intravenous solumedrol. This is pretty much the same thing as prednisone, but not in pill form. That would be a huge number of pills to contend with. Each dose is 1000mg, not 1000 over a week, so we're talking mega-steroids, 3000 mg in all. Sometimes 5 days of this are ordered. The infusion doesn't take long, maybe an hour, and after it life just resumes, continue the day, etc. This is the way steroids are usually ordered with MS. A lot is needed.
Personally I had no side effects whatever, not even the metallic mouth taste which is so common. People often get super-energetic and can't sleep, have mood changes, and so on, but nothing more serious than that, and it goes away, sometimes gradually, when the infusions are complete. Remember, this is with mega-doses of the steroid. Smaller doses are not likely to be a big issue, though as I said, they may not work either,.
There's nothing dangerous about prednisone if you follow the doctor's instructions, so no need to worry about that. You could have no side effects, or some, but really it's not a big deal. Good luck with this.
Last spring I was prescribed 3 days of intravenous solumedrol. This is pretty much the same thing as prednisone, but not in pill form. That would be a huge number of pills to contend with. Each dose is 1000mg, not 1000 over a week, so we're talking mega-steroids, 3000 mg in all. Sometimes 5 days of this are ordered. The infusion doesn't take long, maybe an hour, and after it life just resumes, continue the day, etc. This is the way steroids are usually ordered with MS. A lot is needed.
Personally I had no side effects whatever, not even the metallic mouth taste which is so common. People often get super-energetic and can't sleep, have mood changes, and so on, but nothing more serious than that, and it goes away, sometimes gradually, when the infusions are complete. Remember, this is with mega-doses of the steroid. Smaller doses are not likely to be a big issue, though as I said, they may not work either,.
There's nothing dangerous about prednisone if you follow the doctor's instructions, so no need to worry about that. You could have no side effects, or some, but really it's not a big deal. Good luck with this.
We'll they ordered me some type of injection medication. And that should come in soon. And I have to take a spinal tap. And your rt I am a lot calmer now and I want to thank y'all for that.. I can't thank y'all enough for the advice y'all give me. What do you think about the 200 mg a day or 1000 a week?
Hi, Matt. You sound a lot calmer than before, which is a good thing.
Just a few ideas now that you do have a diagnosis: MS can be mild and it can be severe. Most of us have bouts of both, but on the whole we do pretty well. We want to stay that way.
Your doctor gave you prednisone, a steroid, to try to knock out inflammation you're experiencing now, to calm down whatever symptoms you have. Few doctors would administer that small a dose, but I'll pass over that for now. I think it's important, and many here agree with me, that you also be on a medication that actually treats the MS, and not just symptoms. There are now quite a few 'disease-modifying drugs' that work to reduce flare-ups and contain the disease, though of course there are no cures.
I am concerned that your doctor is calling your MS 'mild.' It may be affecting you mildly now, which is great, but you also want to keep it that way. Waiting till you have a severe event to start on a medication treatment just makes no sense to me.
I know you have a great deal to learn and absorb about MS, and possibly are feeling somewhat shocked too, as most of us have been. It's a lot to take in. So take your time about it and ask any questions you have. There are many here who will support you.
I do urge you, though, to get educated about MS. There are many ways to do this, and one of the best is the website of the Nat'l MS Society. We also have a great source of info here, in our Health Pages (see far right column on your screen). It's best to avoid any sites with something to sell, of which there are many, and stick with those presented by highly regarded medical groups, etc.
Finally, when things have settled down a bit more, take some time to consider where you want to be treated. Some general neurologists are quite good, but for the most part they are not particularly knowledgeable about MS, given that there are hundreds of neurological disorders they need to know about. Most of us here have had a much better experience with a neuro who really specializes in MS (and not just claims to). There are good sources of info on this.
Okay now FINALLY finally :-) congrats on getting a name for what's been happening to you. You do sound so much better than before.
ess
Just a few ideas now that you do have a diagnosis: MS can be mild and it can be severe. Most of us have bouts of both, but on the whole we do pretty well. We want to stay that way.
Your doctor gave you prednisone, a steroid, to try to knock out inflammation you're experiencing now, to calm down whatever symptoms you have. Few doctors would administer that small a dose, but I'll pass over that for now. I think it's important, and many here agree with me, that you also be on a medication that actually treats the MS, and not just symptoms. There are now quite a few 'disease-modifying drugs' that work to reduce flare-ups and contain the disease, though of course there are no cures.
I am concerned that your doctor is calling your MS 'mild.' It may be affecting you mildly now, which is great, but you also want to keep it that way. Waiting till you have a severe event to start on a medication treatment just makes no sense to me.
I know you have a great deal to learn and absorb about MS, and possibly are feeling somewhat shocked too, as most of us have been. It's a lot to take in. So take your time about it and ask any questions you have. There are many here who will support you.
I do urge you, though, to get educated about MS. There are many ways to do this, and one of the best is the website of the Nat'l MS Society. We also have a great source of info here, in our Health Pages (see far right column on your screen). It's best to avoid any sites with something to sell, of which there are many, and stick with those presented by highly regarded medical groups, etc.
Finally, when things have settled down a bit more, take some time to consider where you want to be treated. Some general neurologists are quite good, but for the most part they are not particularly knowledgeable about MS, given that there are hundreds of neurological disorders they need to know about. Most of us here have had a much better experience with a neuro who really specializes in MS (and not just claims to). There are good sources of info on this.
Okay now FINALLY finally :-) congrats on getting a name for what's been happening to you. You do sound so much better than before.
ess
I would make sure you go to your other scheduled appointment on the 15th with the other neuro. Benign and 'mild' MS aren't really terms the grown up neuros use. It sounds like he's hedging a bit.
That being said, the treatment he proscribed may well be of assistance to you. But for comparison the standard dose for the treatment of an MS flare is 5x that. (1000mg methylprednisolone via IV infusion for 3-5 days). That taper (the later, reduced dose instructions after you finish the first week) is a good idea and can help avoid some of the potential side-effects.
How well you tolerate them remains to be seen. I for one have never had the slightest issue with them. I would be inclined to take the medication as directed, but this is of course your decision. Again, I'd just be sure to keep that appointment for the second opinion.
That being said, the treatment he proscribed may well be of assistance to you. But for comparison the standard dose for the treatment of an MS flare is 5x that. (1000mg methylprednisolone via IV infusion for 3-5 days). That taper (the later, reduced dose instructions after you finish the first week) is a good idea and can help avoid some of the potential side-effects.
How well you tolerate them remains to be seen. I for one have never had the slightest issue with them. I would be inclined to take the medication as directed, but this is of course your decision. Again, I'd just be sure to keep that appointment for the second opinion.
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