Steroids; what a waste of time and money they were..!

Sorry, quick rant (whilst I wait for client to show up).

Just came off a 5-day course of methylprednisolene. Made me feel slightly quesy, ruined my taste-buds and did not help with my spasticity/tremors/tightness in the slightest.

Not sure if they’e worked for anyone else out there, but I have read on here that steroids don’t tend to do much for ppms. Am quite annoyed as i had to pay for them privately and my tastebuds are still not back to full working order.

Grrr. Rant over.

Hi Clucker, I agree with you. I have had steroids both orally and intraveneously and they do absolutely nothing for me either. The only difference is I didn’t pay for mine. Anne x.

Steroids (if they work) are only supposed to speed up recovery from a relapse that would happen anyway in time. My understanding is that they are utterly pointless for PPMS.

They done diddley squat for me unfortunately.

Pam x

Complete waste of time as I found out, causing almost permanent heart burn (mine were taken orally). No use for people with PPMS but my neurologist prescribed them anyway.

I wonder why they try them at all on PPMS’ers?

Is it because they’re not sure if it’s PPMS & it’s one way to find out?

Seems so awful really to give people hope that here’s something that will help… when for us it doesn’t help and has nasty side effects.

Pat x

That’s one of the reasons we are here so we can RANT…M

That’s one of the reasons that we are here, so we can RANTM

Hi Pat

I had steroids years ago, twice in fact, but at that time there were no

other medications available, so the neuro say it maybe worth a try but

I am not sure if they will do any good. Not very reassuring, but I thought

I had nothing to loose, so went with it.

You may have a point about it being a way to see if it is definitely ppms,

but times and medications have advanced so much since then, don’t know

if this is the case now.

Rain and wind here today, do you think our summer was last week?

Pam x

Hi Pam, I dunno… seems stupid giving steroids when they don’t work… maybe it’s just neuro’s experimenting!

Very windy and wet in London today… however, in my effort to be cool this summer, I sent my cleaner Reaz off to Argos to get me a very powerful tower fan. It IS powerful. On highest setting it’s like a hurricane blowing. It has a night-time setting too… gentle and quiet.

Was £69.99… … but now I know it is Utthoff’s syndrome I have I’m determined to be as cool as poss this summer!

He, Reaz, also moved my wardrobe and made room for the folded wheelchair so it looks nice and neat.

He did all the work but I’m cream crackered!!!

Pat x

I agree, best to try and stay cool, the extremeties of weather really

make my symptoms worse.

Your cleaner sounds lovely…send him down to me when you

have finished with him!!

Our granddaughter is 12 today, so we are going out for a meal tonight,

that will be knackering in itself, but hey, tomorrow I can rest.

Pam x

Hi, I had IV steriods 2 years ago just after my MRI showed a cervical lesion. They completely removed all my sensory type symptoms which have never returned. Spasticity my worst complaint remained and has continued to get worse.

Moyna x

Interesting Moyna… so they do appear to help some people with PPMS?

Pat x

Think summer is over Pam, raining here today too. Tim

Hi Pat, I have not had a dx yet, although PPMS in my opinion would be more likely than RRMS. Only one spinal lesion, clear brain and negative LP. Did have one episode althougth which has left me with progressive spasticity in one leg. Neuro says I am a very unusual case!

Moyna x