Methylprednisolone questions

[Michela11]

Hi all -
I was put on intravenous methylprednisolone 12 days ago immediately upon MS diagnosis. It was 4 days of 1 gram a day. Delivered over 5 days because of a panic attack I had. No tapered dose prescribed afterward.

It being a shock diagnosis, it was a very very bad week once I came out of shock. (Docs had initially said it might me MS then said they didn't think so, so I was prepared for major disc issues or even a tumor, but not MS). I'll just say it was like being in a hurricane of pain and grief (and side effects)

That initial shock has passed - I had to go with it all. First corner turned.

About the methylpred.

5 days after my last dose, I woke up feeling normal for the first time in months. I thought " the drugs are starting to work" and that seems to be the case.  My Lhermitte's and burning legs went from excruciating to tolerable to mild. I understand it can take 3 weeks to work, though.

However - my legs were warming up yesterday and I have woken up today with burning legs and soles of feet again -  nowhere near the level they had been - but worse again.

Does anyone know if the methylpred effect comes in waves? Feeling OK, then symptoms back, up and down? Or is this the sort of thing that is going to happen anyway? I understand the drug is to reduce inflammation - but wonder why it seems to be bringing the inflammation down, but the heat has started again?

Please - any advice or observations from anyone who has used this, or knows anything about it??

Michelle

[Michela11]

Thanks for that T-lynn- oh yes I will definitely take the time to research. Am on no meds at the moment - they wanted to wait 3 weeks for the methylpred to work, then to discuss medication options. I am interested to see how people react to the various options, though I understand everyone reacts differnently.

I've already told the neuro receptionist I'll be sending questions beforehand to give him time to 1. answer them when I see him in weeks, and  because I don't even really understand the implications of the spinal MRI.  Nor do I officially know the results of the brain MRI (although I know there are lesions there, I got it out of the woman who did the MRI, she did me a favour.)

Solu-medrol infusion - sounds so lovely doesn't it? I didn't know it was called that - they call it methlpred here (Australia) and the treatment "pulsing".

They had already put me on Neurontin prior to diagnosis because nothing was helping the burning and Lhermitte's - but it did absolutely nothing. I figure the inflammation was so bad there was no way it was going to. It costs a bomb here too ... not covered by medicare unless diagnosed for epileptics. Even though I understand in the majority of cases it's used effectively for neurological issues. Thanks, government. :(

[T-lynn]

I hope you will take the time to research them and be well informed when you see your neuro.

The solu-medrol will stay in you system for a while.

Yes, the solu-medrol was for 3 attacks its been a rough year.

I'm on Rebif.Its a shot 3 times a week under the skin.I had no flu like symptoms,but do get site reactions.i'm taking a short brake from it right now.

I'm have an up dated vep and a baer next week.

Keep asking questions they'll get answered,this forum is rapidly growing.

T

[Michela11]

Thank you very muchh for that T-Lynn.

Not on any disease modifying meds yet, the neurologist said he wanted to discuss that at the next appt - not till Dec 3 I think it is - to give drugs enough time, me I guess enough time to get my head around intitial reactions, brain mri and I have vision evoked response test tomorrow. Yet to be labelled also - as in what type.

Three solu-medrol infusions since March ..... have you had exacerbations needing that? Obviously yes - dumb questions. I'm so sorry.

[T-lynn]

The solu-medrol infusions are used to lesson the attack and reduce the inflamation.I'm sorry that this was such a blow,especially after being told maybe then no than wham yes.

With MS many of us,we have residual symptoms that linger some may leave some may stay.It can take a week to months before symptoms disapate,some never may.

Living with MS is just an adjustment to living a new way and learning to deal with the annoying symptoms.

Are you on any of the disease modifying meds(rebif,copaxone,avonex)?

There are meds that can help with the burning sensation such as lyrica and neurontin.

I've been on the solu-medrol infusions 3 times since march,they definately help with the attacks but not all my symptoms disapated.But we are all different.If the burning sensation worsens call your neuro.

T

[Michela11]

No-one can answer this? No-one has been given this?