IVSM how often do you get it and how do they know when your need it?
How many times have you gotten IVSM or how frequently?
My neurologist put me on it immediately after my LP because I had high proteins. But if you don't have a LP how do they know to start IVSM? I don't know what it actually did except make me feel awful?
I have good days and bad (I think more good than bad, but my neurologist said on our first exam "your not uch of a complainer are you" ) but im not on DMD's yet, waiting for them to start/come. I'm in limbo I guess.
I started with a five day IVSM and take them three times monthly now. You would have to have others that have more experience explain to you what IVSM does. From my understanding it takes the swelling down of the lesions. Without IVSM, I probably would not be able to function. I have had a very bad reaction to the five day treatment. The three day treatments don't bother me. I do drink a lot of extra fluid. I am not to a dose pack afterward.
I've only had one 3 day 1Gm/day IVSM and that was after the DX of Optic Neuritis (4/2010,) although if my vision keeps acting goofy, I'll be calling the Neuro to see what wee do next. I was diagnosed with RRMS on 11/12/2010.
Most RRMS patients only take IVSM with flairs. Some of the PPMS patients go on "Pulse IVSM" to try and keep the progressive disease in check.
I have never been offered steroids. They do nothing to stop the course of MS. For some people they help others they do not. There is no rule of thumb. Steroids are used in any disease to take down inflammation. The problem is when you stop them there can be a rebound effect and the inflammation can return. It has to be a decision made in each case between your Doctor and you.
The DMD is what you will use to slow the Progression not the Steroids. Progression happens with or with out symptoms so it is important to stay on a DMD to reduce your chances of Progression.
Catching it at your age is such a good thing! You are diagnosed so you are out of limbo.
It was (now) a nine year search of what was wrong with me. My doctor explained that because I wasn't treated everything went crazy!!! She expects the program she has me on to last about two years. Hopefully, it won't always be three IVSM per month. We had been doing two but I was still losing about seven to nine days per month.
Alex is right. It does nothing to cure but it is like any medications we use to control MS. It takes the inflammation down and gives me a chance at a normal life. I am able to keep my home, cook, bake and even go out with friends for lunches. Without it the pain level is unbearable and I am left to sit like a big lump of nothing.
There are risks...big ones...to consider when taking that amount of steroids. I was informed and decided to go for it. My neuro takes blood work often to check on my levels of vit D and B12, calcium and heck....who knows what else. I decided it was my quality of life and am taking the gamble.
I also am taking Rebif which (besides the breathing issues) seems to be keeping new stuff from popping up. If you are put on that amount, my advise to you is drink...lots and lots of fluids. I don't use a dose pack and truly never have had a reaction....errrr...other than when I was given five days of it. I hope to never ever never ever have to do that again. I was sicker than sick.
IVSM, while reducing inflammation also temporarily suppresses the immune system. It doesn't treat MS or MS lesions. It doesn't just modulates it like DMDs, but knocks the whole immune response down a few notches. If there is any immune responses going on like what they believe happens in a exacerbation, it will theoretically stop it in its tracks. That is why IVSM is an approved therapy for all MS (PPMS, SPMS, PRMS, & RRMS) exacerbations.
DMD's tweak the immune system and seem to be ineffective against PPMS. There is also some evidence that is under investigation that some of the DMDs may also reduce inflammation as a secondary effect by inhibiting the release of certain inflammatory cytokines. Some immunologists and biochemists consider interleukins and interferons to be types of cytokines.
There is a lot of confusion and debate about IVSM in MS, but as a class of drugs, steroids do much more to the body than just act as an anti-inflammatory. They effect glucose utilization. intra and extra cellular fluid balances, and their anti-inflammatory effects are at an immunologic level unlike NSAIDs and the COX-2 inhibitors that work by inhibiting Prostoglandin H2 synthesis.
You need to work with you doctors to determine if and when to use IVSM. It is a "big gun" with lots of systemic effects and side effects. It effects complete immune system. DMDs are targeted at tweaking (modulating) a specific response of the immune system.
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