Last reply 1 year ago
Pregablin ?

Hi all,

I have had to take this for burning in the leg and foot that was keeping me awake at nights
Does this mean I will be on it forever or will I be able to come off it at some point .
Anyone taking it who has come off it?

Thanks

Rachael

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stumbler
1 year ago

@rachaellouise , unfortunately, these symptoms, e.g. neuropathic pain, are indicative of residual damage from past relapses. So, this now may be part of your life, as will the Pregabalin.

I’ve been on it for quite some time myself. If you were to stop, then do this under medical advice. You shouldn’t just stop.

Whilst this may not be the answer you want to hear, retain hope that medical advances, e.g. myelin repair, might alter this landscape.


rachaellouise
1 year ago

@stumbler – not bloody fair is it?
Well will the burning not settle down ? I’ve only had ms 6 months . What will it be like in 15 years then?
🎄😞


stumbler
1 year ago

@rachaellouise , whoever said that life was fair!

The burning may not settle down. The Pregabalin will dampen it down somewhat and it will just become something that you live with as you notice it less.

What will it be like in 15 years? Cured is my hope. 😉


Anonymous
1 year ago

Hi @rachaellouise please follow @stumbler advice on not suddenly stopping the pregabalin – not a wise move I know this from experience unfortunately!)

My neurologist prescribes me clonazepam to reduce spasms/pain during the night, thus helping me sleep, it may be worth discussing this with you’re MS nurse or neurologist?


rachaellouise
1 year ago

@stumbler
@craigsreddie
Hi – I am not going to come off it now .
I will still keep taking it . I was just wondering if this will Be part of my life for good?
My ms nurse and neurologist did not prescribe it the local gp did because the pain was just too much. So I went to my local gp. The guy I see is really nice but not specialist in ms so doses of medicine not sure on for ms!
For example I was on steroids in May 500mg a day for 5 days . I felt a bit scared when the gp told me he only ever prescribes upto 150mg and has never prescribed more. He said that’s a massive dose and I felt worried. That dose wiped me out! But I think that is the dose for ms people!

I feel with my team they just leave you to sort it out yourself and no clear advice . I don’t feel supported to be honest . It makes me more proactive in one way but also not supported in another . I feel let down on no clear direction for me particularly at times when you need it . It’s okay to have a appointment every 6 / 12 months with neurologist but what about during those times in between. I think they are just too overrun so it doesn’t work !

If I had clear direction from medical people things would make me feel better. If they interacted and knew he plan for me.
I do what I can and I try the best I can but I’m not a professional in medicine and some things are beyond what I can sort out .

Rachael


stumbler
1 year ago

@rachaellouise , you’re right about the dosage of the Steroids that we are prescribed for a relapse. It is extraordinarily high, but that’s what it takes. There’s more info here:-

https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

Most GPs are aware of MS, but their knowledge is limited.

You need to have a meeting with your MS Nurse, to explain your feelings about the lack of support.

You’re right, Neurlogists do seem to be very busy. And, as we know, GPs are of limited use, so this is where the MS Nurses come in. They sit between you and the Neuro and your GP. They’re MS Specialists and more contactable than your Neuro.

They will seek advice from the Neuro, if required, and liaise and direct the GP with MS-specific prescriptions. They’re well worth knowing well. 😉


Anonymous
1 year ago

Hi @rachaellouise pregabalin is one of quite a few different oral meds for neuropathic pain, so there are more other options that May work better for you. Your MS nurse will know these better than your GP & will discuss your taking anything new with the neurologist. its not written in stone that MS means a life of pain (mine hasn’t been). As you’re recently diagnosed the stresses you are going through trying to take it all in will not be helping the MS/pain either.

So have a chat with your MS nurse &see how things go.

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