IVSM - it's looking like my 1st dose is a good possibility.

[Sidesteps]

To my surprise, I received a phone call from my doctors RN this morning. I guess with being diagnosed with ON Friday, my MSologist wants the chart notes and thinks I need 5 days of IVSM.

The nurse explained that they usually do that in the hospital up there but since I'm an hour away they will likely try to find someone local for me, probably the local hospital. She explained pretty well to me the protocol and why they treat this. I told her I could get to their hospital if needed, I just would prefer to stay local.

I did explain, the Ophthmalogist had discussed this treatment with me but felt that since my acuity is relatively good and I'm managing the pain with a high dose of ibuprophen that it was a controversial. She responded that my MSologist thinks it is a flare and we need to treat it.

I know that there may be other reasons to treat so whatever she thinks is best. I'm not sure what will be decided (after receiving the chart notes) but is there any advice should I in up treating this with IVSM? This would be a first for me.

Thank you all ~  

[LizBeth922]

Please pardon my lack of knowledge, but does the doctor only prescribe IVSM if you are in a flair, or having a bout of ON? (wasn't sure if they also prescribe it for patients at the time of diagnosis... before putting them on a long-term medication)

[Sidesteps]

Thank you all,

I just received the phone call confirming this will be my first dose. 5 days.

Reality hits ~

[figuerpa]

I have been on it a few times. The metalic taste can be nasty but I sucked on a peppermint or peppermints durning my infusions. My were also done at home which was awesome as far as I am concerned.

Never really had a problem with heartburn but that could be because I took medicine because the nurse that did it the first time told me I should because a lot of people get hearburn.

As for sleep the first couple of days I had a problem sleeping after that I did fine. It makes you feel a lot better, sometimes it takes the first dose to feel the difference and other times it took a couple days. I did get shaky with it,

My neuro never ordered a taper dose but I recommend you ask your doctor because I turned into some kind of monster for a few days up to a week after stopping. My family understood why I was so grouchy but poor DH got the brunt of it. He finally just walked away when I got witchy lol.

It will make you feel better faster than without taking it. And you know we are here for you if you have any questions.

Oh one other thing, you may experience a huge surge of energy, that is always great but just remember not to over do it cause you may make yourself feel worse.

Good luck,
Paula

[NormanG22]

I was giving the 5 day treatment this summer as I was being diagnosed, it did wonders for me as I was in a what seemed like a nasty flair.  I went in expecting the worst, but really had not issues.  I did get the nasty taste in the mouth, which the nurse always had breath mints, available to help with that and some insomnia, not that I was really sleeping that well before starting the treatment.  By the end of the last treatment I was feeling so much better.

Hoping the best for you.

[Lulu54]

SS, there is little reason to be nervous about this - for most everyone the 5 day course of IVSM is exactly what is needed to feel better.  I hope it works that way for you!

Lulu

[Sidesteps]

I knew that it likely will cause insomnia. My daughter was on prednisone as a young child a lot for asthma.

I did not know about the metalic taste. I will start taking previcid. I have a strong stomach but I'd not like to cause damage.

I'm a little nervous as I've read about some not tolerating it well.

[COBOB]

Before starting IVSM, I like to take Previcid for 24 hours and I keep taking it while on IVSM.  It prevents the heartburn I get from IVSM.  The metallic taste never seems to get to me, but the heartburn and sleep disturbances do.

Bob

[kwarendorf]

IVSM was my savior this summer. I was having a rather fun filled flair up and was prescribed the IVSM before I was dx'd with MS.

My treatment was also 5 days and was administered at home. A nurse came on Day 1 installed the port and showed me how to hook up and disconnect the "juice box". She came back on Day 3 to change the port and on day 5 to remove it.

The benefits of the steroids were nearly immediate and I had no side effects. The IVSM was followed by an oral taper, 12 days of decreasing doses of prednisone.

I had a very positive experience with IVSM.

Hope this helps,
Kyle