Question about IVSM

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Question about IVSM

Postby msmything » Mon May 26, 2008 4:24 pm

I had my 1st 3 day course of IVSM, 1000 mg/day, It's been a week, am I supposed to feel different by now?

I thought I had a moment or 2 of mental clarity the other day, and I got all excited, but today I'm back to walking into walls.

I'd love to hear everyone's experiences...
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Postby Artifishual » Mon May 26, 2008 5:37 pm

Took me atleast a week before it helped. Good luck, hope you get to feeling better
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Postby superman » Tue May 27, 2008 9:51 am

Solumedrol IV has an effet for the 4 weeks following the infusion.
For my first infusion(12 years ago) the IV had an instant effect but now it is more 2 weeks.
Good luck anyway, Solumedrol is quite a burden.
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Postby msmything » Tue May 27, 2008 10:06 am

Artifishual, nice cat. I thought I had the coolest feline...Thank you for your reply

Superman, what do you men when you say the IVSM is a burden? I really don't feel any ill effects, though there were a couple of instances of murderous rage that I expected and kept under control.

I have been steroid dependent, oral, for about 15 years due to another autoimmune called Pemphigus that had no other tx at the time, now it's not advisable to mess with that till I can get a neuro and dermatologist that wish to figure it out together...What do you think the odds are with that?

I'm new to this site obviously, I'm kinda surprised that I haven't heard more experiences re: ivsm, is it somewhere on an old thread?
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Postby Artifishual » Tue May 27, 2008 10:30 am

I had to take the ivsm after my first and secound flare ups and then once a month until i started taking rituxan. i don't miss the su it mad me hard to be around. i haven't had that since around feb of this year. the only time i took oral was to get off of the iv the first time. hope it gets better,thanks PS I hate cats LOL
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Postby AllyB » Tue May 27, 2008 12:43 pm

Hi there

Been a bit busy, otherwise, would have replied earlier, sorry...

I have only ever had IV Solumedrol, never oral - in my country, the docs reckon that oral doesn't do much good for ms inflammation, and I haven't had another condition that required oral steroids.
But your question pertained to iv...I can't really exactly remember how long it took me to definitely better the first time I had a course, but I think that first bad relapse that they treated with ivsm lasted a good 6 weeks, with residual symptoms still present today. Subsequently, I have had several courses (1000mg per day, for 5 days), and my recovery usually starts about 2 weeks after steroids - but the recovery is not always complete - I am usually left with something new to deal with! I am lucky thou - the first 6 years or so of my ms, I always recovered completely, never had 'serious' deficit, and didn't require interferons. Only the last 3 years or so have been a little tougher.

Last point - my Oncologist (long story) has warned my that we have a lifetime limit for ivsm at such high doses due to cardio-toxicity: you may have up to 60 doses of 1000mg (not courses) over your lifetime, then there can be problems. She knows this as she deals with steroids a stack - brain tumours, side effect treatment etc with chemo - she usually uses Decadron, but has used most of the steroids. I only mention this as I have not heard it discussed on the boards and it might be important to someone.
Ivsm is a bit of a burden - I become a seething bitch who disolves into tears on a whim for at least a week or two after my steroids, plus my face goes bright red, I get hot flushes, sweating, palpitations, insomnia...! But 'no pain, no gain' - the side effects are transitory and hopefully the reduction in inflammation can only benefit us. So it is a trade off to me.

Hope all goes well and that you see some real gain soon.
I am a real animal lover - got 2 cats and 4 dogs...Plus 2 kids!
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Postby msmything » Wed May 28, 2008 11:55 am

I'd never heard anything with regard to cardiotoxicity and IVSM. In fact I've recently read that some MS 'xperts' are recommending a 6 month course of IVSM, 1 x per month, and then maintainance thereafter.

I wonder if other drugs used in oncology cause the IVSM to become toxic.

Chemistry set anyone?

Where abouts in Africa?

Artfishual, I hate cats as well. But this poor B'tard walked into my backdoor a couple of years ago and won me over. Mostly 'cause he's dog-like. He goes outside instead of a litter box (which he finds repellant) and he comes when he's called, even when he's out exploring new frontiers.

He watches TV too, but now beer drinking..
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Postby AllyB » Fri May 30, 2008 12:09 pm

Hey there

Nope - not anything to do with the chemo or other drugs, purely the steroids - lifetime of 60 X 1000mg doses; but 1000mg per month for 6 months is only 6 doses...I will look it up or ask her for a reference.

I am in South Africa - I am a native Brit (Northern Irish actually), but came out here many years ago to study, met my hubby and stayed!

My cat has never used a litter box even as a baby she went outside - very clean animal, buries her own poop! My dogs get on great with her too...
Al
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