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In Category: Treatments
Discussion:
Monthly Solumedrol
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Does anyone get regularly scheduled "maintenance" iv solumedrol? I was just wondering how long it lasts for you?

In May I received my first 5 day x 1000 mg iv and then in June it was just 1 day x 1000 mg.

I am due to get another 1 day x 1000 mg monthly starting Monday thru December.

I noticed today that I can't lift my toes off of the floor again, I have numbness and tingling in my legs and right arm and pain in my right arm and shoulder and also in both knees.
Posted on 07/15/11, 07:41 am
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Reminder: This is a support group for Multiple Sclerosis (MS). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 07/15/11  9:06am
" After my five pulses, I had to go to two every three or four weeks. "
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Reply #2 - 07/15/11  5:30pm
" For how long? I mean, does it ever go away completely for you for extended periods of time? "
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Reply #3 - 07/15/11  8:00pm
" Mine was to be for a two year peroid. I made it to the year mark then began having gastro issues...heartburn...severe case of it. So, I had to stop. I will begin Tysabri next week. They also gave me five shots of . Acthar (at the cost of $27,000.00) to replace the ivsm. It doesn't work as well as the steroids but has at least kept me able to transfer.

May I ask what form of MS you hAVE? "
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Reply #4 - 07/15/11  9:16pm
" Well, I am still considered as having an unspecified autoinflammatory disease because my MRI is atypical and my spinal tap was negative. I am being treated with ivsm for symptoms and my MRI's will be done again in November to see if a firm dx can be made. I am just grateful that this dr. is willing to treat because I went to 3 others who wouldn't and I was beginning to lose my balance and ability to walk. I was told that it would probably be primary progressive. "
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Reply #5 - 07/16/11  6:09am
" Well, from my understand and the National MS Society agrees that for PPMS steroids do not work. Steroids help withinflammation making for a shorter relapse. PPMS is characterized by nerve degeneration not by inflammation. There are no drugs rather than symtoms managment for PPMS...which is why it is such a sad dx.

Go here for more information

http://www.nationalmssociety.org/ab...

Do you think it is possible he is testing to see if it is PRMS? "
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Reply #6 - 07/16/11  6:18am
" Sorry about all the spelling and useage of wrong words (rather instead of other, etc.)...My mind is not working.

I wanted to add. This might be why he is not using a DMD and only doing steroids. If he does think it is PPMS, he knows steroids will do nothing. So maybe he is giving you a shot in the dark hoping to see some improvement with steroids. If so, that could change his opinion that it is PPMS...

Just a thought "
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Reply #7 - 07/16/11  6:22am
" So, if it is PPMS the steroids wouldn't help with my symptoms at all? My symptoms def improve after the ivsm but it's only temporary. I was told by my 3rd neuro that if it was MS it was probably PPMS and I would be in wheelchair within 3 years. This, my 4th neuro isn't getting specific until he sees the November MRI's. "
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Reply #8 - 07/16/11  6:24am
" Totally understand about the mind not working ;-) One way I know that the steroids have worn off is that I can't find my way out of a paper bag when I am driving! I have wasted so much gas turning around and around and around..... "
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Reply #9 - 07/16/11  6:25am
" No, they will not help because with PPMS it has nothing to do with inflammation. The steroids are used to bring the inflammation down which is what helps to shorten a relapse. If they help, then they know it is not PPMS but rather one of the others..... "
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Reply #10 - 07/16/11  6:28am
" Well then I guess that is good news for me, right? My problem is that they are really only helping temporarily though.....so hopefully the dr will be able to find something to help for a longer term soon. "

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