Monthly IVSM: How many months is standard for this?

[alastria]

I'm in the middle of 5 monthly IV solumedrol treatments.  I get 1 gram one day a month.  My first round was 3 days.  I am doing so much better than I was 6 months ago.  The best effects of the steroids seems to last about 2 1/2 weeks then slowly peters off but still not to the point I was originally.  Some symptoms are gone - cramping hands and feet.  Fasciculations leave me for only a few days after the infusion but when they come back they are not as intense.  My leg pain is down by half but my leg weakness is about the same.  Fatigue is the same.

I have new numbness in my toes and tingling up to the mid-calf about 4-5 times a day.

This is long, but I am wondering for those of you who have done the monthly IVSM - how many months did you get it?  I will see the neuro again right after the 5th round.  The MS specialist hasn't decided what kind of MS I have yet.  You can read my journal, but I've had some symptoms for years.  Weakness and pain made me pursue the diagnosis.  Are these results typical of IVSM - some symptoms go away and some stay?

I'm happy with the results of the IVSM.  My quality of life is much better than it was.  But I do get major fatigue and weakness following the IVSM for about 4 days (I never get the energy - clean my house thing).

Any thoughts?  Thanks so much!

[alastria]

Thank you for your response and sharing your experience.  

So far I am not on DMD's.  My neuro isn't sure I am relapsing/remitting b/c my symptoms have just accumulated - no remissions.  The last visit, I asked about DMD's and he gave me a packet about copaxone and said to call him if I wanted it.  My primary and I decided to wait until the end of the 5 months of steroids to see where I was after that.  This MS specialist is okay but he doesn't explain things well.  

Since I am still accumulating new symptoms over time, I am guessing he may decide I am progressive and not recommend DMDs anyway?

The montly steroids are a roller coaster but I guess we'll see how the next 2 go and then decide.  I keep hoping I'll be good enough to go back to working full time but my job is physical and I'm on my feet a lot of the day and it's making things worse.  Ok, now I'm ranting.  Ughh MS!

Thanks.

[av8rgirl]

I've gone the monthly pulse steroid route and it's different for everyone.  You haven't said if you are on any other medications (maybe in your blog which I've not read) so I am just  going to answer you from my experience.

I have done the monthly steroids both when I was on Betaseron and when I was on no DMDs.  I did them for 6 months - during the warmer weather as I am heat intolerant and the theory was to try to lessen the severity of my exacerbations when I was on Beta.  It did help.   When I was on no DMDs, that was my treatment of choice while I was waiting for Tysabri to return to the market as I (now stupidly) thought my insurance company would approve it for me.  I spent a year doing pulse steroids and if memory serves (ha ha, that's a joke) I think I ended up having 3 exacerbations so I did 3 3-day IVSM infusions.   I will admit that doing the pulse steroids did help with symptoms .... neuropathic pain, fatigue, numbness, tingling, bladder retention, etc., but it's really not a good choice for long term treatment....

Anyway, I too feel really carpy  right after I've done 3 days of IVSM.  It usually takes about a week before I start feeling back to "my normal."  I don't get that hyper reaction that a lot of people do.

I hope you get feeling better soon.