Rheumy visit recently, going forward…..

[Cfmad298601]

had my 2-3 monthly Rheumy visit last week. I’m currently on 6.5mg….looking to taper down to 6 soon (delayed as I had a cold recently.) Touch wood, all generally going along ok……she seems confident in my slow tapering method and seems happy to let me continue at my own pace 👏🏻.

She said that we’ll have another appt in feb 2024, unless I need to contact them before if I have any problems…….as I mentioned about possible issues with adrenals kicking in, or lack of it.

She mentioned the plan moving forward if I’m able to get, or very nearly, off prednisolone was to continue with the methotrexate (currently 15mg once a week) for another year or two 🤷🏼‍♀️😬😱 to hopefully keep flares/symptoms at bay, even increasing the dose ???

Does this sound a usual tactic……generally not noticing bad symptoms from MTX but have had hair loss for last 4-5 months. She said that could also be from long term pred use as well.

But I don’t want to increase the risk of more hair shedding…..

[PMRpro Ambassador]

When did the hair loss start? Pred is often blamed for hair loss - but you tend to start it soon after the PMR/GCA starts and they can both cause hair loss as serious systemic illnesses but it often isn't noticed for a few months so pred gets the blame.

MTX definitely will do it - my hair started to come out in clumps of several hairs within a week of starting MTX. A much higher dose of folic acid very often sorts it out - some doctors are very stingy with it, 5mg once a week, Some people need 5mg 6x a week to reduce the adverse effects.

How the MTX is tapered off depends very much on the doctor but that sounds a common approach.

[Cfmad298601 in reply to PMRpro]

I did only notice increased hair loss after starting MTX…..which I started about 5- 6 months after the pred (about 6 months ago now) Didn’t notice anything immediately, I have longish hair that I keep mostly tied up so only noticed additional shedding during showering and hair styling etc.

They started me on 5mg folic only 1 day a week for the first 2-3 weeks, but this was quickly increased to 6 days a week onwards. I was just a bit surprised that she suggested having to stay on MTX for anything up to a couple of years even if you’re finished with pred - I had assumed it worked in conjunction with pred, to lessen its negative effects???

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

Hair loss does coincide with it being ill with PMR [so rheumy shouldn't be putting all the blame on Pred], but many find MTX can be a culprit..

[PMRpro Ambassador in reply to Cfmad298601]

Suppose it depends how you look at it. All MTX did for me otherwise was magnify so-called pred adverse effects like hunger and weight gain, hadn't been a problem with just pred. The fatigue it caused was overwhelming - no MTX, much improved.

MTX works brilliantly for some people but not for everyone. They don't really know how it works, some think it is by increasing pred's antiinflammatory effect so you get more bang for your buck. Others think it suppresses the immune system so you need less pred. For some people MTX definitely lets them get to a slightly lower dose - but stop the MTX and the symptoms came straight back in a few weeks as the MTX gets out of the system. And for a few - brilliant result. But it is not that common really.

[Cfmad298601 in reply to PMRpro]

Thanks…

Oh, my…now I remember getting really hungry at times, even to the point of having tummy rumbles when waking up I the night and unfortunately I’ve put on weight. Virtually all the menopause weight gain I lost 2-3 years ago has all gone back on 😬 😩. This really is a nasty rollercoaster ride…….

[PMRpro Ambassador in reply to Cfmad298601]

Yup - I gained 1kg in a month which had never happened on ordinary pred alone! It did with methyl prednisolone which was horrible! I was switched back to prednisone and all its nasties went away.

[Jakey2020 in reply to PMRpro]

I never had pred but on month five of mtx and hairs coming out for last few weeks, Consultants looked at my hairline n just said it will grow back 😩

[Sharitone in reply to Jakey2020]

What a meanie! It probably will grow back - mine did - but in the meantime it's not pleasant, particularly in the winter. Any room to increase your folic acid?

[Jakey2020 in reply to Sharitone]

I’m on max Sharitone.. 5mgs six days.. I have long blonde hair so looks loads wrapped around hoover besides what comes out when washed😭

[Ozziedays]

Hello, your ‘going forward’ plan sounds similar to mine. I started 20mg MTX weekly after a couple of flares at around 5mg pred. Latterly, I was tapering pred at 0.5mg per 4 weeks.

I got to zero pred with no more flares in November 2022. Shortly after that I was returning to UK from Australia and saw my Australian rheumatologist for a final review and advice going forward. Had I remained under her care, and all other things being equal, she would have envisaged me continuing with MTX for 18 months after reaching zero pred.

Since the beginning of 2023 my care has been picked up in Edinburgh (GP has a shared care protocol for PMR with Rheumatology, plus I saw Prof Gray at her clinic). We reduced my MTX to 15mg weekly in March, and then to 10mg in August. I will see Prof Gray again next spring when - assuming all continues to be well - we will reduce to 5mg and make a plan towards zero.

I’ve not been aware of any side effects from MTX. My hair grew thicker and very curly during pred. It has calmed down somewhat but still has more body than pre pred (saving me the cost of styling / thickening products!). I was taking 5mg folic acid twice weekly in Australia but that is now reduced to once weekly.

It is somewhat reassuring that two different rheumatologists on opposite sides of the world are following the same broad plan!

Wishing you all the best x