Hi i nhave RRMS i am going through another relapse. It is very vry frustrating, i am 36yrs old, i live with my parents and am a single mum of 2 small children, my mum and dad are a great support… infact my only support! My local MS nurse is useless, my GP tries his best and its hard to get to talk or see my neurologist as he is based elsewhere! My GP gave me a dose of steroieds as everytime i get admitted they dont look at my notes and give me intravenious ones, even tho my neurologist wrote in that it is ok to give them to me… my ms nurse reakons it takes 3 weeks to set up this as a day case… the last consultant i was under was a rheumatologist who wanted to discharge me on 10mg of prednisolone even tho i said i have 500mg of methlyprednisolone so this wouldnt touch me… he saidn i deal with steroids all the time methlypred is only available by intravenous not oral… this is not true! He wouldnt look in my notes!!! Im sick to death of no-one willing to help or advise me. My GP has now prescribed a 2nd course of oral steroids but noone has said if this ok or no! HELP ME PLEASE SOMEONE!!!
Hi there,
Sorry - just to check I’ve understood the question, why do you think the steroids prescribed by your GP might not be OK? Do you think you should be having intravenous instead? Or that you should not be having them at all?
As I understand it, recent studies have shown no difference in effectiveness between steroids given orally or intravenously, so oral steroids should be up to the job. I don’t think you are supposed to have more than three courses of steroids in any one year interval, though, because of side-effects, so whether it’s “OK” or not would depend on how frequently you’ve already had them.
It doesn’t actually do you any harm if you don’t have steroids at all. They only speed up what the body does naturally, so if you didn’t have them, you’d eventually get the same degree of recovery, just not as fast.
I don’t know why your MS medication was ever under the direction of a rheumatologist. That doesn’t seem appropriate at all, and I’m not surprised he didn’t know the correct dosage for an MS relapse.
Not sure whether any of this answers your questions?
Tina
The following is from page 58 of NICE’s “CG8” full guidelines to multiple sclerosis. I suggest you download the document (it’s easy to find on-line and free to download) and print out the relevant part so you can shove it under the nose of anyone who thinks they know better!
RECOMMENDATIONS
R47 Any individual who experiences an acute episode (including optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids. The course should be started as soon as possible after onset of the relapse and should be either:
● intravenous methylprednisolone, 500mg – 1g daily, for between three and five days or
● high-dose oral methylprednisolone, 500mg – 2g daily, for between three and five days.
R48 An individual should be given a clear explanation of the risks and benefits involved in taking corticosteroids.
R49 Frequent (more than three times a year) or prolonged (longer than three weeks) use of corticosteroids should be avoided.
R50 Other medicines for the treatment of an acute relapse should not be used unless as part of a formal research protocol.
Karen x