Methotrexate question

[karegodd]

I’ve tapered to 6 mg of pred over 3 and 1/2 years for PMR. I’m taking 15 mg of MTX 1x/wk. MTX is a steroid sparer and at what dose of prednisone can you discontinue the MTX and just continue with pred? I appreciate any feedback from people who might shed some light on this. Thanks.

[PMRpro Ambassador]

That isn't the way mtx is normally used - as a steroid sparer it (possibly, they don't really know) changes the way the pred is metabolised so you get the same result from a lower dose of pred. If you stop the mtx before the autoimmune disorder underlying the PMR has burned out and gone into remission you do run the risk of the symptoms worsening again because you are now on too little pred. Many people don't actually get to zero pred even on mtx, just to a lower dose than they were before or they have fewer problems with flares while reducing. Occasionally patients get off pred and then have to discontinue the mtx but their doctors keep them on mtx for some time before stopping.

[karegodd in reply to PMRpro]

Thank you so much for this info. I now have a much better understanding. Definitely my situation improved when I started the mtx - the +’s outweighed the -‘s. I was just hoping I could stop the mtx soon but with this info from you and my gut instinct and elevated CRP I think I just stay the course and continue with the DSNS taper. Thank you again. I really appreciate your knowledge and opinion.

[PMRpro Ambassador in reply to karegodd]

Careful with that CRP - if the trend is upwards over a few weeks, don't taper the pred any further. You may not be a pred zero person with mtx - in 12+ years on the forum I have only come across a few people using mtx who got to zero and most of them could well have done it without given the time it took them.

[karegodd in reply to PMRpro]

I will be careful, thank you. I go soon for more blood work and depending on the results will decide on whether to hold the pred or try a reduction of .5 mg. I kind of think I need to hold but will ultimately decide with more info from bloodwork-although I won’t let that totally dictate. My approach to managing PMR has shifted thanks in part to a lot of information I have received off this site. Kind of agree with you - might not be a zero pred person with mtx. Took me awhile to wrap my head around that. I want quality of life not just to endure it.

Thanks again for your invaluable input.

[PMRpro Ambassador in reply to karegodd]

Exactly - QOL is all. I'm very lucky in having 3 doctors who all agree on that!

[karegodd in reply to PMRpro]

Very important to all be on the same team wanting the same common goal😉

[Pmrat60 in reply to PMRpro]

Very interesting. I was diagnosed with PMR May 2019. Reduced to 12mg within a few months, and the was put on 6ml MTX injection to reduce pred. Got down to 7mg pred by Jan 2020, and then to 5mg by July. I stopped the MTX and continued to tapper pred, however at about 3mg, PMR symptoms returned. Currently on 7mg pred and restarted MTX (past two weeks). I have a pretty mild case of PMR, typically no CRP or SED rate indicators. My PMR symptoms are muscle ache throughout my shoulders and arms especially in the AM. I am reluctant to increase pred more than 7, and hope the MTX keep starts to work in the coming weeks. I see my Rheumatologist at the end of the month, and now have a better understanding of how the MTX works to keep the pred level lower for me. I was really hoping the PMR was gone, as I was symptom free for months at 6ml MTX and 5mg pred.

Thanks for your insight on pred.

[PMRpro Ambassador in reply to Pmrat60]

The blood markers being low doesn't mean it is "mild" - I have never had markers outside normal range but was very disabled in the 5 years the PMR wasn't diagnosed and it is still alive and kicking after 15+ years. In fact, my personal normal ESR is low single figures and when it was apparently OK at 16-18, it was in fact very raised for me.

There are plenty of people who are symptom-free on 1mg of pred - but if they try zero pred the inflammation builds up slowly until the symptoms are as bad as before pred. It is like a dripping tap eventually fills a bucket - if there is even a small amount of inflammation left over it will eventually overflow.

[Pmrat60 in reply to PMRpro]

Really insightful. Thanks for all you do.

[MrsNails]

Hi, as Pro has explained, it changes the way Pred is Metabolised & the ‘aim’ is to get you/us/me off Prednisolone....

Under normal circumstances they don’t stop the MTX until you’ve stopped the Pred.

The lowest l’ve ever achieved is 5mg Pred with a sneaky 4.5mg under cover of Chemotherapy so that doesn’t really count 😉

I’m not actually sure how many, if any of us have achieved that to be honest....

I’m on 25mgMTX & 13.5mgPred so still up there in high numbers but feeling all the better for it! 🙏🏼

[karegodd in reply to MrsNails]

Lot to be said for feeling better😉🙏. Hope you/me/us can continue to reduce and still have some quality of life while doing that.

I didn’t realize mtx changed the way pred was metabolized until Pro and you had told me. It makes sense. Sounds like it can improve the efficiency of your body utilizing the pred.

I have a clearer realistic vision of my pmr journey. Always trying to work with the body and science and general wellness- a constant juggling act for us all 🙏❤️

[MrsNails in reply to karegodd]

How long have you been on MTX?

[karegodd in reply to MrsNails]

Sorry I thought I replied to you but I can’t find my response. Maybe I forgot to press ‘reply’- blame that on the pred😉. I’ve been on mtx for about 2 and 1/2 years. My rheumatologist tried CBD oil before trying mtx but it didn’t help. MTX certainly was the catalyst to help me reduce prednisone otherwise I was stuck at about 25-30 mg of prednisone and although it was miraculous at first I wasn’t liking the side effects of the higher pred doses.

Hope you are doing well today. Snowing and cold here in northern Ontario Canada so may not get a walk in today- maybe just a good book and a cup of tea kind of day. Staying away from tv and the USA election👍

[MrsNails in reply to karegodd]

You sound very similar to me my first time on MTX I tapered from 18mg to 7.5mg very successfully but then l had to stop it for Surgery & was off it for over a year.

Towards the end of that year l started to decline & requested to return to MTX but l could never get below 5mg Pred.

I was seen by a Locum as my lovely Consultant died in a climbing accident. The Locum stopped the MTX as my ALT Blood Levels were high, l then l had to wait on Scans & my PMR started to Flare & it took over a year to see another Consultant as we’d moved house & country (Wales to England) They started me on 15mg MTX but it wasn’t working, so up to 20mg but as l started reducing the Pred all the symptoms started to reappear.

So l’m back up on 13.5mg Pred which is the dose where l last felt well, this was agreed by the Rheumatology Clinical Practitioner until the 25mg MTX kicks in, so fingers crossed!

[karegodd in reply to MrsNails]

Oh wow what a journey. My fingers and toes are crossed for you. Hopefully things will kick in soon and you’ll get some good symptomatic relief.

My liver enzymes have stayed within normal range so far 🤞. I probably felt my best around 12-13 mg but I have been tapering very slowly with intermittent stops from tapering. I was thinking of doing another taper but I think I will coast for now. It is emotionally hard to deal with setbacks and the roller coaster that goes with it as you can probably attest to.

I have learned from people like you and others who have been on this journey longer than me. I strongly know deep down that this will be a long haul for me and I won’t be one of those that gets over this anytime soon. Prednisone and mtx may always be a part of my life and if so, then so be it.

Thank you for sharing your journey and your wisdom. I will be following your posts and so wish for you improved health and fun and joy (however that looks) in your life.

❤️Karen

[miccika1 in reply to MrsNails]

Hi MrsNails how long does it take for methotrexate to kick in?

[MrsNails in reply to miccika1]

Morning, they say up to 12weeks to get the full effect, as normally they start you on a half dose, increase after a couple of weeks then to the full prescribed dose for you.

When I started mine the first time, l started a Slow Taper straight away but l was on 18mg—>17mg so a bit easier up there, l tapered very successfully to 7.5mg without issue apart from a sudden month of nausea but that settled pretty quickly.

I’ve had a recent increase & we are still working on the same theory that it will take 3months for me to experience the benefit.

I always kept my Mondays ‘clear’ in my diary, l used to take it on a Sunday. I found l was always more tired, lethargic but it passes & l was hardly aware l took it to be honest but l still never made specific plans for Monday’s.

I tend to rest now the day following taking it & find that beneficial, l’m going up to 25mg from 20mg so it should be at an optimum level by Christmas, in the meantime l’m only attempting a very slow, low reduction 13.5mg —> 13mg

Have you started taking MTX yet?

MrsN

[miccika1 in reply to MrsNails]

Yes i started three weeks ago. Took 0.2 ml in injection three times and will start w 0.4 ml in couple of days

[MrsNails in reply to miccika1]

Wishing you All The Best 🍀

If you have any questions don’t hesitate to ask.

MrsN

[miccika1 in reply to karegodd]

Hi karegodd how long did it take you for methotrexate to start working? Any side effects, especially a day after you take it, if you are taking injection?

[karegodd in reply to miccika1]

Good morning. Like Mrs. Nails it took between 2-3 months for it to start working. I take mtx in pill form. At first I was taking it split in the day on Sundays so 7.5 mg in the morning and then 7.5 mg in the evenings. The headaches and nausea were too bad so now I take 7.5 mg Sunday night and then 7.5 mg Monday morning so hopefully some of the side effects are while I sleep. I still have a slow day on Mondays and sometimes that slides into Tuesday as well. Side effects are mostly fatigue and lethargy as well and sometimes still nausea and headaches. Like Mrs. Nails I do better if I just plan for quieter days Monday Tuesday. Good luck with the injections. 😊