Forum

Steroids

Hi there I wonder if you could give me some information please. A friend of mine who has not been dx with PPMS that long, wondered if steroids are used in the treatment of PPMS? and has anyone had any experience with them please?

Wendy x

The only treatment I have been given was a steroid infusion for an hour over 3 consecutive days. It was tried to boost my energy.

Sorry to say, it fail miserably.

Hello Wendy, by the way.

Thanks and hello to you too Mr Grumpy; it appears that they aren’t that effective, I’m sorry to hear that.

Wendy x

That’s my opinion but everybody’s different. My MS nurse asked if it helped and wasn’t surprised when I said no. It was a case of it being the only thing they could give me for now. I was dx in January and it was the first (and only) thing they offered me.

Yes that’s the same with my friend, she has been offered no drugs so far. Thanks for the information though.

Take care

Wendy x

Hi Wendy, just to say I agree with Mr Grumpy… steroids aren’t any use for ppms.

Sometimes they try them when they’re not sure if it’s ppms or not.

Pat x

Hi Wendy, although steroids have always been thought not to work in ppms there is a phase 2 trial in Denmark looking to see if pulses of Methylprednisolone may halt the progression of SPMS and PPMS. From what I’ve read they have found it helps in some people. I found the article by accident on the American MS Society website. I was diagnosed with PPMS and found they help with my joint pain, spasticity, and give a bit of a boost. However they haven’t helped with my mobility. Another person I know finds they also help. I think everyone is different and you have to weigh up the pros and cons but for me it’s now about quality of life. I think in the States somes Doctors give monthly pulses of steroids (lower dose) Denmark is a country that collects a lot of data and has done since the 60’s and stores it on their national data base. Google Denmarks study on the pulsing of PPMS/SPMS patients with Methylprednisolone and it should come up. Let me know what you think. My GP wants me to give it a go.

Thanks Pat

Wendy x

That is interesting, thank you for your input, by chance my Neurologist has asked my doctor to give me a prescription of Methylprednisolone to see if it helps with my walking. If it does not help I will have to come off of Betaferon. I was telling this to my friend with PPMS and she asked if steroids would help her. Anyway thank you I will Google Denmarks study.

Wendy x

Hi, I think WE are more likely to help ourselves guysinteresting stuff take care be safe M

Hi All-I was given 500mg per day for 5 days, I was much better while taking them but as soon as I stopped was back to square one.

Peter

Hi I was given 500mg per day for 5 days only took them for 1 and half days made me ill ended up in hospital with bad abdominal pains had to have all kinds of tests. I would never take them again. xxxx

Hi I was given 500mg per day for 5 days only took them for 1 and half days made me ill ended up in hospital with bad abdominal pains had to have all kinds of tests. I would never take them again. xxxx

I was getting 1000mg/day for 5 days about every 4-6 months. I found it made me feel good and I’m sure I wasn’t as wobbly; a lot of people commented that I seemed to walk better.

A new neurologist was dead against the treatment so I went to an MS specialist. Bottom line was it made no difference to a timed walk (never did one before) and there are some rare but dreadful side-effects that I’d rather avoid.

Ho-hum.

Mike

Thanks Mike

Know what you mean about side effects, my brain does seem a bit quicker but physically there doesn’t appear to be any difference.

I am now waiting on physio and would rather use that than the steroids again.

Take care

Wendy x

I have had the twice by intruveinous and once tablet form the first IV one worked very well I had just been dx and they really boosted me since the the second lot faied and the tablets kept me awake for about four days straight. Try it and see is alll I would say