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In Category: Treatments
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

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 hopefully the dr will be able to find something to help for a longer term soon. "

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