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MS relapse help please!

Hello,

this is is my first post.

my husband suffers with MS and has just suffered from a bad relapse. It started late last week, so it has been going on for a week now. He has lost a lot of sensation in this lower arm and hand, which is making it unusable. He says it doesn’t even feel like it’s there anymore. He started his steroid tablets as soon he realised it was another relapse and has now completed the course.

He he is on daily injections of copaxone 20mg and has been on them for less than 6 months.

The he problem we are facing is that we cannot get hold of his Ms nurse and his neurologist is away on holiday. We have been to his GP and they agree that he needs to be seen asap, but nothing has been done! It’s driving my husband mad and I don’t know what else we can do.

any suggestions please???

Hi Holly, did your hubbies doc prescribe the steriods? They don’t work instantly, unfortunately, but he should start to feel better gradually. Can the nurse be emailed by his doc? Must admit my doc was very good & in the end he got hold of her, hope he feels better soon Tracey x

Hi Holly

To be perfectly honest, there’s probably not an awful lot the MS nurse can do. Your husband has taken a course of steroids (I assume that was 5x days of 500mg of methylprednisolone or another high dose type) which is what the MS nurse would recommend. It is quite early days for the steroids to have worked. They can take a few weeks to shorten the relapse, and that is all you can hope for with steroids, don’t forget sometimes it feels like they’ve done absolutely nothing.

The other thing she/he could do is look at symptom management. If there is nerve pain, they can prescribe something for that (there are many drugs available for nerve pain). But as far as I know there isn’t much that can be done for numbness.

You say he’s been on copaxone less than 6 months, the neuros reckon it can take that long for a DMD to work unfortunately. Although you could argue that the copaxone’s not as effective as other drugs. I wonder why he started on an injectable with less effective expectations rather than a daily tablet (ie tecfidera which has better expectations). Is your husbands’ neurologist an MS specialist? If not, maybe you could investigate whether there is a specialist Neuro, who could be expected to offer the newer DMDs.

One thing you could consider is phoning your neurologists’ secretary and try to get an appointment with him/her for as soon as s/he’s back from holiday. You could then ask whether your husband could move to another drug. Tecfidera is a first line drug so moving onto that should be an option. Tysabri might be an option, but to move onto it, the criteria is that he should have had 2 relapses whilst on another first line treatment (ie copaxone).

Sorry to have no further advice, maybe someone else can help further. I do hope the numbness wears off soon.

Sue

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go to an A&E of a hospital which also has a neurology department.

they will likely have a neurologist on call and they shouldn’t object to helping you out, if you explain the situation.

it is not reasonable for you to suffer the hopelessness of a relapse just because someone has taken a vacation.

good luck.

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Many thanks for all your replies!

his Ms nurse called us back today and told him to see how the steroids go and if need be, they will have to prescribe some stronger ones, she says she will speak to the neurologist on Thursday (???)

unfortunately his neurologist is away until the end August. There is only 1 MS nurse and 1 neurologist for this area, so seeing someone else is not an option, which seems stupid. We would have to wait for an appointment :frowning:

he was on interferon weekly injections before, but the side effects became a big problem, that’s why the neurologist said about going on the copaxone. I did find it strange that the success rate was about 30%?? And then u had to wait a long time for them to have any effect.

we asked about the tablets on a few occasions, but was told that there was many side effects and that they are not available up here (sw Scotland), due to funding. We’ve been told they put almost everyone on them in other areas.

hubby says he’s not hopeful that the steroids will work, as they haven’t had much effect in the past. He’s quite down about things now, the last 2 relapses and been big ones causing a lot of problems, many of which have not improved afterwards.

I read somewhere recently that tecfidera was available in Scotland but don’t quote me on it. Maybe google it or email the MS nurse or phone the neuro secretary.

Also had a relapse a few months ago and my nurse and neuro were on holiday, but when I said I was earning no money they saw me within a week. I just kept phoning the neuro secretary daily asking for cancellations then they managed to squeeze me in. Worth a try

I’m pretty sure that Tecfidera is available in Scotland. You may need to look into whether your neurologist is required to arrange for it to be available for all MS patients. Obviously this doesn’t help in the short term, but if your husband is relapsing on copaxone, an alternative drug would be the ultimate answer. Actually he’d be better off on Tysabri (has more like a 65-70% success rate) but again it’s a case of finding out what DMDs the NHS is Scotland is required to prescribe and the prescribing criteria, maybe with the help of the MS nurse when you get hold of him/her. If they are required to offer certain drugs to people who meet the criteria then funding is not an issue they are supposed to consider.

And I would also want to know how and why stronger steroids are possible. Generally, a person with an MS relapse has one course of high dose steroids. It’s a bad idea to have too many courses of steroids because of the risk in later life of osteoporosis. So it’s generally accepted that a couple of courses per year is ideally the maximum (I think, correct me if I’m wrong people). If there is a stronger dose available then why wasn’t he given this in the first place? It sounds as though your MS nurse is maybe not as knowledgeable as many of them are. (Trying to be diplomatic here!)

One thing I would say though is that our response to steroids is different each time, one time they’ll help within a few days, another time after two or three weeks. And sometimes they don’t help at all. So your OHs previous experience isn’t necessarily what will happen this time.

Ultimately MS is a bu**er. A relapse is likely to have some, or total remission, it’s just a case of coping with symptoms while they last.

Sue