The last major hit my partner suffered was in 2009 when his lost the use of his left and side (there has been several minor things in betwee), but recovered fairly quickly after five days of steriod treatment. This time its his right hand side, which for him is impacting more, but despite five days of steroids things are not improving and despression is hitting home hard as well as the fear of not recovering.
So what I want to know is what happens next, after the initail five days of 500mg steriods fails?
What question/treatments should I be asking his neuro consult? We are due to see him on Monday.
I’m trying to stay positive, but have this sick feeling in my stomach that life as we know it, is about to change
Hi sorry things are worrying you and not happening as quickly as before. Don’t forget steroids can alter mood so maybe that’s why he feels depressed. Remember MS and it’s symptoms do change and so recovery times from relapses will also change. I would ask Neuro if new MRI is needed in case new lesions or inflammation have occurred. Hold on in there.
Relapses can last a long time: months - a year even. So not being fixed after five days, even with steroids, is not indicative that it won’t ever improve. Steroids don’t improve the extent of recovery anyway: studies have shown that people who don’t have them recover just as much as those that do - the process is just slower. So it’s not the end of the world if they don’t work - nature is still working to repair the damage. You probably already know steroids have risks and side effects, so if a first lot hasn’t worked, I’m guessing they will not just go straight to another lot, but wait to see how things go.
If he has only had two significant episodes - now, and in 2009 - I’m guessing your partner does not qualify for disease modifying drugs (DMDs), as the usual rule is two clinically significant relapses (or more) in any two year period. However, it all depends whether the “minor things in between” were ever reported, and if so, whether the neuro judged them “significant” or not. There are no concrete rules about this - some neuros treat “significant” as meaning “disabling”, so a purely sensory relapse (abnormal sensations, but no disability) may not always count, for the purposes of deciding whether someone ought to be on DMDs.
Whether this latest episode changes anything is something the neuro might discuss anyway, but if not, you could ask.
Steroids are the only treatment I know of, for relapses - otherwise, it’s just a case of trying to manage the symptoms, which could be by some combination of physiotherapy, pain relief, muscle-relaxants etc.
Hope this helps, but please don’t assume five days is last-chance-hotel. If symptoms hadn’t improved in a year, I’d say chances are they’re around for good, but it’s much too early yet, to be drawing that conclusion.
Lee has had seveal issues and is on Corpoxane daily injections, we tend to class major hits as one that complete stop him in his tracks. Most attacks have cleared or started to improved within a week, so this current issue is a really shocker as its not following his normal path.
I will put forward tomorrow the suggestion of another MRI and even explore the idea of this new tablet v injections.
There’s no “normal path” - every relapse can be different, even in the same person. I haven’t had very many, but they do have a history of lasting months with me, so perhaps I’m more used to the idea. I’d be amazed and delighted if I did get better in a few days, as I’ve got used to assuming I’ll be in it for the long haul - but I know that’s not necessarily true, and it could be completely different next time.
I doubt a new MRI will be necessary, as the fact there’s been a new relapse demonstrates there’s active inflammation. I’m not sure a new scan would prove anything we don’t know already. I don’t think it’s usual to have a new scan for every relapse, although they might, if they’re considering a switch of meds, as some are only available if MRI evidence shows a certain amount of activity.
I’m aware there’s been a new oral DMD just licenced. It’s a first line one, which means patients should no longer have to exhaust all the injectables, before it’s an option. So yes, that could be on the table. It will be interesting to see what the prescribing rates are - whether it immediately starts overtaking the injectables, or whether most neuros prefer to stick with the more established drugs.
