PMR polymyalgia rheumatica

[Soubifirst]

hello,

I am a newcomer and would like to learn experiences with prednisone methoxerate combination ,

Presently up from 4 mg Prednisone to 10mg

And refusing methoaxerate?

Any advice greatly appreciated!

Thanks !

[SnazzyD]

Hello and welcome. Can you describe what your symptoms have done over the past year with reducing and also what symptoms caused the need to go back up to 10mg? Was that your decision or a doctor’s? Compared to most, getting to 4mg in about a year is quite fast.

[PMRpro Ambassador]

Hi and welcome!

If you rewrite your title to include methotrexate (just add "and methotrexate") then you will get a list of Related Posts at the side of the page on a computer, by scrolling down below the thread on a phone.

You will also find a lot of information in the FAQs, there is a link immediately below your post.

I tried MTX, I had to give up after 4 weeks as the fatigue absolutely finished me.

MTX works very well for a small proportion of PMR patients but for most it MAY allow modest reductions of a couple of mg or not work at all. I don't think you are missing out by refusing it but that is my personal opinion.

Tell us more about your taper - it helps us help you. It sounds as if you got from your starting dose to 4mg in barely a year which is very fast. The median time to get from 15 to 5mg is 18 months - you were a long way ahead of the curve. It is most likely you have overshot the dose you need - the lowest effective dose - and our way of dealing with such a flare is to add 5mg to the dose where you flared for up to 10-14 days at most and drop back to the last dose where you were good, I would think 5mg in your case, and stick there for a 2-3 months before trying again with 1/2mg steps. Reduction steps shouldn't be more than 10% of the current dose - at 5mg that is 1/2mg.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Nothing to add to others comments, and more info would certainly help…especially as it sounds as if you have already flared - but you might like to have a read of this for general info - where you will see that a year is not very long for PMR-

healthunlocked.com/pmrgcauk...

[piglette]

If you had a flare, going up to 10mg for a week or so should knock the PMR on the head and then you coukd drop down to around 5mg or 6mg immediately if everything had gone smoothly on 10mg.

[redruth123]

Hi Soubifirst, as PMRPro says, MTX helps a small proportion of people.

I'm one of those and started on 10mg MTX weekly - 9 months ago - along with 5mg pred, (Background - 2 years into diagnosis, 2 and half yrs with PMR)

it's been a life saver for me so far. I havent reduced Pred much due to other illnesses, an operation and several vaccines since going on MTX. BUT I have experienced no side effects from MTX, have much less fatigue, and less stiffness and pain.

Just saying all this as a suggestion to you and other PMR folk not to dismiss MTX altogether. It's really trial and error. Hope this helps. All the best.

[Prof99]

Hi there, I was put on MTX two years ago to help me get off Pred. I was on 5.5mg Pred when I started on MTX but still felt every drop of .5mg in Pred to the current 1.5mg that I am on now. Convinced that the MTX wasn’t doing anything, I asked my Rheumy if I could stop MTX but he said no, but I could reduce by half (20mg to 10mg) if I wanted. Knowing that MTX takes a while to work, I wasn’t expecting an immediate result but I felt the effect of the drop within a couple of days. I struggled through 5 weeks at 10mg MTX but got fed up with waking up in pain so I took myself back up to 15mg MTX. I now feel comfortable at 15mg MTX and 1.5mg Pred. Rheumy wants me to get off Pred altogether (by dropping .5mg every 4 weeks) but it’s not his body that hurts – so I am going at my own pace. I’ll try another Pred drop next month. But, I just wanted to let you know that even though I thought MTX wasn’t working – it clearly was.

[GML19 in reply to Prof99]

I was diagnosed with GCA two years ago and had been on high doses of steroids for most of that time because of eye problems. I had suffered several infections and was put on MYX after being unable to reduce beyond 10 mg pred. I found the fatigue horrendous but found that fasting for one day a week greatly helped. I have been off steroids since December 2022 but am still on MTX although on reduced dose.

For me it seems I am one of the lucky small percentage.

Good luck to everyone with especial thanks for this wonderful forum,