methotrexate advice : I’ve been on steroids for six... - PMRGCAuk

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methotrexate advice

Freshairfiend profile image
14 Replies

I’ve been on steroids for six months since being diagnosed with PMR. I’ve had a lot of difficulties with them and have been referred to rheumatology. The consultant is going to try me on methotrexate. I’d be grateful for any tipis, suggestions, advice from anyone who has tried methotrexate. I know it’s a long transition process.

many thanks.

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Freshairfiend profile image
Freshairfiend
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Now you have asked you can see plenty of info in related posts, and in a recent post -

healthunlocked.com/pmrgcauk...

Also loads more info in FAQs -

healthunlocked.com/pmrgcauk...

Freshairfiend profile image
Freshairfiend in reply toDorsetLady

Thank you. I always forget to loo at these!

PMRCanada profile image
PMRCanada

I was hesitant to start MTX, but after almost 2 years stuck on 9mg pred, I started it two years ago with a new rheumy. I take 15mg weekly, injected (which I was told helped reduce unpleasant side effects compared to oral medication). I take it at night and drink plenty of water. I also take 5mg of folic acid every day except injection day.

I waited 10 weeks (time for it to “kick in”) prior to tapering pred. Although I’ve had only one manageable side effect (hair shedding), some patients experience fatigue, nausea and pronounced hair loss. You really won’t know how your body will respond until you try. The comforting thing is that you can stop MTX abruptly (unlike pred).

I have been able to lower my pred dose, but it’s been slow going due in part to having to stop my MTX for weeks, more than once, while taking antibiotics for diverticulitis. I was also very sick the first winter with every contagious illness going around, but I was on 25mg MTX at that time, and have since lowered it.

I’m not sure what your issues with pred have been, but 6 months in means it’s still early days in your journey. There may be a number of pre-tests they perform prior to starting you on this medication. I have monthly bloodwork ordered and reviewed by my rheumy and shared with my GP. All the best.

Freshairfiend profile image
Freshairfiend in reply toPMRCanada

thanks so much. That’s really helpful

KASHMIRI1 profile image
KASHMIRI1

I am taking methotrexate and find it is ok. I half my dose which is 12.5 and take 5mgs in the morning and then take the 7.5mg 12 hours later. They come in 2.5 small tablets. I found splitting the dose has helped with any nausea which isnt very often. I also have buccal tablets which are for nausea and are very good.

Freshairfiend profile image
Freshairfiend in reply toKASHMIRI1

Hi there,

Many thanks. Please can you tell me what buccal tablets are? Are they prescribed or over the counter?

PMRpro profile image
PMRproAmbassador in reply toFreshairfiend

Tablets that you tuck between your gums and cheek and they release slowly over time.

nhs.uk/medicines/prochlorpe...

KASHMIRI1 profile image
KASHMIRI1 in reply toFreshairfiend

The full name on the packet is Prochlorperazine 3mg Buccal tablets. I have these prescribed, I am not sure if they are an over the counter medication. The reaction isnt instant but works gradually. I find them highly effective. Apologies for not making that clearer.

PMRpro profile image
PMRproAmbassador in reply toKASHMIRI1

I think they are one of the medications that can only be sold with approval by the pharmacist, doesn't need a doctor's prescription though,

KASHMIRI1 profile image
KASHMIRI1 in reply toPMRpro

I wasnt sure as mine is on prescription originally in a previous lifetime for migraine which I now suspect was the GCA brewing up.

PMRpro profile image
PMRproAmbassador in reply toKASHMIRI1

If you need it - prescription makes it cheaper at our age! But you can at least try to see if it helps before asking a doctor ...

Freshairfiend profile image
Freshairfiend in reply toPMRpro

Thanks, good idea

Freshairfiend profile image
Freshairfiend in reply toKASHMIRI1

Thanks, that’s very helpful

KASHMIRI1 profile image
KASHMIRI1 in reply toFreshairfiend

You are welcome, I realised there is another word on the packaging that says prochlorperazine maleate buccal tablets 3mg.

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