Last reply 1 month ago
Anybody knowledgable on relapse protocol

Hi

When you are having a relapse what do you do?

Do you have to see a neurologist to be prescribed steroids ?

How long does it take for you to get the steroids ?

Thanks

Rachael

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stumbler
1 month ago

@rachaellouise , contact your MS Nurse. If they feel that it is a relapse requiring Steroids, then they will liaise with your Neuro to arrange the Steroids.


arbee
1 month ago

Your GP can prescribe you steroids however check with your MS nurse first, I got steroids directly from the GP when I thought I was having a relapse but then got told off by my MS nurse because it was too close to my last dose of steroids (they stay in your system for quite some time and you shouldn’t take them too often)


stumbler
1 month ago

GPs aren’t comfortable prescribing the high dosage needed to address a relapse. Anything less than high dose isn’t worth taking.

But, it is a good point about the number of recommended courses per annum.


arbee
1 month ago

My GP prescribed exactly the same dose as the neurologist did, apparently it was in the notes sent from my neurologist that they could prescribe the same high dosage in the event of a relapse. I get the impression my GP has zero experience with MS so just followed the notes they were sent, I’m sure not all GP’s would be so willing to hand them out so willingly. Always check with your MS nurse though!


rachaellouise
1 month ago

Hi – I am having a relapse !

The thing is why can’t it be that easy for gp to perscribe If in the notes ! I don’t get all this running around when your sick and stressed too . It’s far more complicated and takes longer than in needs to be .

When you just need steroids .
I haven’t had them since last May so not have them that often . Side effects yes a few but better than this.

I was doing so well too !

Rachael x


stumbler
1 month ago

@rachaellouise , GPs are just not that well informed about MS. That’s why there’s specialists.

Doctors work to a set of guidelines. They are loathe to wander outside those guidelines, without being given specific guidance by a specialist.


keepupthefight
1 month ago

@rachaellouise
Hey

Sorry to hear you are going through a relapse. I really hope you can rest, and recover with time.

I get the frustration of all the rigmarole of having to see so many people.

My understanding is, that high level doses of steroids are not without risk. It can cause a few things and can cause a pretty serious issue to the hip that requires a replacement.

As we know; there are various risks for everything, but I think the reason our neuros are needed to sign off, is they are best placed to assess the need for steroids for a relapse compared to the risk I mentioned. They can take into account your past dosage history of steroids, and look at how disabling the relapse is likely to be, perhaps based on mri and symptoms..

So I guess my long winded response = GPS are not ms specialists and therefore not best placed to advice on high dosage of medication that could have serious side effects; as they don’t understand the risk / benefit payoff.

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