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Just wondering if anyone can help..

Last April i was in hospital as i had one heck of a flare..basically i was given a bril MOT !! and it was discovered more inflammation had hit my brain so thats why i was having the visual problems..vasculitis loss of reflexes etc..

My wonderful rheumy and his team sorted out a treatment plan for me which was a 4 hour drip of methol pred which was just amaxing....

I then had several months of iv cyclo...that finished in sept and if i am honest didnt have the brill effect i thought it would have...infact thats not true what i mean is i HOPED it would keep me better for longer...

I have been feeling unwell since before xmas and last weekend was just like before i had it all the same symptoms...

The last few days the vasculitis rash as exploded on my legs too...and my hand sfeet and body overall is so hot which i know is inflammation..

what i would like to know is...how many times can i have the metho pred...is it a one off thing or if and when can it be repeated..

thanks in advance.
 

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I've had methyl-pred a few times now - it's fine, you just have to be aware that it causes all of the usual steroid side effects. One of those things that you love and hate at the same time :lol: Hope it works again for you.
 

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Lol yes those flipping side effects...thanks for the reply x x
 

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Hi Christine,

I am sorry to hear things have flared up again.

I don't know if there is a definite limit. My doctor tries to hold it as a last resort if I am not responding to my already aggressive treatment.

Take care,
Lazylegs
 

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Hey, I had 3x500 ml at christmas and i want more already...seeing rheumy on 24th so ill let you know if he lets me have some more!!! xxx
 

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Mooks if you get some i want some lol..do let me know..

I saw my rheumy yesterday i have having some extra blood tests this week along with my normal ones and he wants to see me again mon so will update you then x
 

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Hey Christine,

I'm sorry to hear you're so unwell at the moment.... :(

I've had about 45 pulses of 1000 ml of pred alone, about 7 3-day infusions of 1000 ml of pred followed by cytoxan, not to mention the 15,000 ml during attempts to receive rituxan (and that's not even counting the "small" shots of 125 ml of pred I got before plasmapherisis and of course all the oral pred etc etc etc). IV pred is definitely not a one-off thing in the sense that yes you can have more of it if you really need to but, unfortunately, just like the old regular pred in tablet form don't forget that IV pred does have some not-so-nice side-effects it may bring with it...

Hope you feel better very soon :)

:flowery:

Zoi
 

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hi

hi christine,i have had sle for 11 years now and my consultant cannot get me stabilised.i have had a lot of powerful drugs in that time but to no avail including cyclophosamide,rituximab just to name a couple.the only treatment that seems to help me is the methal pred ,i have 3 infusions over a period of a week and i have it every 3 month:)s for the rest of my life as that is the only drug that seems to help me ,it does not mix well with my diabetes but i can get that under control.without the methal pred i would not be able to walk or anything and i know when the time as come for me to have the infusions.i call this my wonder drug as it gives me such a boost if only it could last a bit longer but never mind.i wish u well and take care talk soon tracey x
 
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