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Eugh!

Hiya,

I think I’m having a relapse - for the past two weeks my legs have been misbehaving. It’s like the elastic bands in them have come loose, I’m also getting (at times quite painful) full body spasms first thing in the morning when I wake up but before I get out of bed. I don’t want to go and ask for steroids - steroids and I don’t really agree and they are my very last resort - but it was suggested today that my GP could help. I take LDN but no other meds, what is the liklihood of my GP just referring me for steroids?

Thanks

Luisa x

Hi Luisa,

Sorry to hear your having a rough time at the moment. You mentioned steroids, I have been on oral steroids for ages now, partly because I’ve got AS & Lupus and have found that they also help the MS. I’m afraid I know nothing with regards to LDN but was your doctor suggesting oral steroids or intervenous (spelt wrong, I think)

I hope you feel better soon and decide what to do . Sending (((((HUGS))))

Janet x

Hi Luisa,

you dont have to have steroids,if you dont want them, its your choice, i have never had steroids,i know a lot of people do and they swear by them, but i just dont like them at all,so chose never to have them.i have had some real nasty relapses too.

jaki xx

Thanks Janet, I’ve got an appt with my GP next week - I really don’t get on well with Prednisolone, so I’m not going to take the steroids if they’re offered. In Aberdeen you get them in tablet form now (not sure if every health board is the same?), although I’ve had them intravenously and in a drink before - every form affects me in the same way and has only once actually done anything positive, so now I refuse them, the side effects are worse than the relapse.

Luisa x

Thanks Jaki, I have an appt with my GP next week, hopefully he’ll be able to give me something to help.

Luisa x

A word of warning about steroid treatment, fine for some but I would personally ask for a dexa scan first, for bone density because Ive found out Im also suffering osteoporosis, so they would have been catostrophic for me. Steroids are known to thin the bone, so play safe first. Its something to consider seriously because I found out after 2 spinal breaks (very painful).

Symtomatic treatments are available if steroids are not preferred. Baclofen for spasms or maybe gabapentine, believe there are lots more.

Hope you soon get sorted and things settle down again.

bren

x

Thanks for raising a really helpful topic Luisa, and hope your relapse is over for you fast. I am confused and concerned about future steroid need as I’ve declined it on first offer for a fairly mild event.

Is it right that steroids speed up the rate at which the ephisode goes away and in so doing reduces the extent of permanent nerve damage, ie. making a fuller recovery and less residual numbness etc between ephisodes?

If that is the case? is declining steroids not a sensible thing to do?? Anyone got any helpful info on this.

All the best Luisa,

Mr S

This is the best advice on steroids I have seen.

As far as I understand, the steroids speed up the relapse, but they do not affect the outcome, so long term for the MS, it doesn’t matter if you take them or not. I do know that in Aberdeen they won’t give you the steroids too many times in a year, and you won’t get each dose too close to another one - this is to do with the possible effects on your bones/liver/etc, steroids are nasty nasty things!

Thanks everybody for all your replies.

L x