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solumedral didn't work?

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Posted 10/11/2008 12:39 AM (GMT 0)
Hi, I am hoping that maybe someone can help me out with this.  The first time I had IVIF (5 days), 2 years ago this December, things got worse for 4 weeks or so and never better.  I had it again last April (3 days) and few weeks later I felt better than I had in years.  It is my legs which start to weaken first, so I had 3 days of Solumedral again about 4 weeks ago and heave felt so lousy.  My symptons are worse.  Originally the dr. had wanted me to come back once a month for 3 months, but that had been postponed due to other problems which occurred.  I was holding water, as much as up to gaining 8 lbs. in a day, so I am on a diruretic?(sp).  Things are almost back under control, but I am so disappointed that things went so pooorly this time.  Has anybody had the same or similar reactions?  I would so appreciate any results people have had after an IVIF.  Thanks so much.
Posted 10/11/2008 9:16 AM (GMT 0)

Hi Purcy,

I’m so sorry you’ve been flaring, and have had such nasty side effects from the steroids. Yikes, 8 lbs a day must have been so uncomfortable. From what I’ve heard, each round of steroids is a unique experience, and sometimes people have good results one time and other times not as much, or it takes a long time for the positive affects to show up. Have you discussed other treatment options with your neuro? I really wish I had some helpful advice for you, but just wanted to pop on here and welcome you to the board.

Sunny

Posted 10/11/2008 6:44 PM (GMT 0)

Thanks so much for your reply.  It is good to hear from different people about their experience with steroids.  I realise everyone is different with MS, so the more I hear the more I know what may be normal and what is not.  I guess I have a tendancy to ignore things and think this is part of aging when after the fact I find out it is the MS.  Unfortunately my neuro is quite evasive and does not tell me much.  I looked to changing yet everyone says he is the best in the area.  He does have a great assistant who I have learned I should ceal to ask questions and talk.  The neuro is always too hard to reach.  I am going to keep checking around though. Thanks again,

Purcy

Posted 10/11/2008 10:05 PM (GMT 0)

Hey Purcy,

Welcome to the board.  I am glad you have found us.  Is IVIF the same as IVIG?  I have been offered that but I have never done it.  I have only had the solumedrol.  I am glad you have the assistant you can work with. The doctor thing is rough.  He may be really good but if you are not being supported in a way that suits you then it can be less than satisfying. 

I hope you are feeling better really soon.  Please keep us posted as to how you are doing. 

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