Hi, I have had SPMS since 2000, 26 years, I live in Essex which may be important. My treatment for 26 years has been a 5 day course of methylprednisolone, steroids, initially intravenously and then orally for 20 years 500mg per day these are every 6 months.
The MS Nurses have now all retired with a new team looking after me and the consultant is new to me also. After much discussion with the consultant he relented and gave me the 5 day course of methylprednisolone but he made it quite clear that I will have to change to Tizanidine 2mg or Dantrolene 25mg per day first.
I have read the NICE guidelines on these two medications but would be interested in anyone’s experience of taking these medications.
The use of steroids in this was has been outlawed for many years, when I was diagnosed 8 years ago I met someone who appeared to be on a similar treatment regime and the new MS Nurse was aghast. I believe the reason was because of the long term side effects of repeated regular courses, particularly with bone health. Even their use for relapses is strongly discouraged and reserved for severe relapses that impact life. While they do speed recovery they have not been shown to result in better final outcomes.
The other drugs are for symptoms relief of muscle pain/spasticity.
Hope this helps explain a little where modern thinking is. There is a definite advantage of looking forward to a treatment and it must be very upsetting for it to be stopped without a proper explanation.
That’s my understanding too. I think it’s pretty unusual to be on high-dose steroids routinely these days because the balance of risks and benefits isn’t generally thought to be favourable.
Hi to you two thanks for your replies, am I being pig headed about the steroids because I have had them for so long or am I thinking that how do I know if the replacement medication will keep me where I am at least?
With the side effects I have yearly blood tests and DEXA scans which show no concerns for diabetes or bone density. Whereas the positives are that for quite a few days I feel wonderful and the next few months I can function better before the 4th 5th and 6th month after the medication when my symptoms worsen.
It would be good to hear from anyone who takes either of these medications for their input and please don’t think that I do not value what you have told me because I do.
Medicine is an art as well as a science, as they say. And it’s as susceptible to fashion as is any other human endeavour, or so seems to me, for all its solemn insistence that it’s guided by data. May there always be room for the doctor who lets the patient stick to what works for them.
Hi all and Alison100, thanks for your beautiful words they brought water to my eyes, honestly. I have been waiting to see if anyone else adds to my post but it seems that I will be the only person taking these tablets unless the MS staff at the hospital look at the person and not at the paperwork. Will write later on in the year to let you all know.
