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Metotrexate again

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DebbieHurts
DebbieHurts

My dr wants me to start taking Methotrexate again to reduce the prednisone.  I quit it awhile back under her agreement.  Well, I looked up the word on this forum and this is what Eileen had to say about the dr who gave it to me then:

Pred is the drug of choice for PMR - and methotrexate does not do anything for PMR pain. In some people - and by no means all - it changes the way the body processes pred so that you get the same effect for a lower dose - or a better effect for the same dose whichever way you like to look at it.

Yes, the silly man IS missing something: you have PMR where the underlying autoimmune disorder is still active and he hasn't cleared out the existing inflammation properly before trying to reduce the dose you are on. Until that has gone altogether you can't find a lower dose that will clear out that new daily amount of inflammation that is characteristic of PMR. It's like a bucket of water with water flowing into it through a pipe into the bottom: you can scoop out a bit of the water every so often and it wont overflow for a while but the only way to sort it out is to empty the bucket of water and close off the pipe. In PMR you need long enough at high enough to clear out the inflammation - and then you can reduce to a much lower dose since all it has to do is deal with one day at a time!

You need a new doctor who CAN see the wood for the trees - this one doesn't

Eileen is this still true of methotrexate?  I did get down to 13mg pred at that time, so maybe it did help.  Now I can't get down past 19 without hurting too much.

1 like, 9 replies

9 Replies

  • EileenH
    EileenH DebbieHurts

    Posted

    Sounds as if the mtx DID help you reduce - so it does have a role for you. 

    Are you in the US? Has he mentioned Actemra?

  • DebbieHurts
    DebbieHurts

    Posted

    I'm in the US.  My dr hasn't mentioned Actmera.  Should I mention it to her?  Does it take the place of prednisone?  I'll go look it up.  Thanks.

    • Anhaga
      Anhaga DebbieHurts

      Posted

      You say you got down to 13.  But now you say you can't get lower than 19.  What happened?  After you stopped the mtx what happened?  Why are you 6 mg higher than you were when you stopped mtx?  Why did you stop mtx?  

      Actemra is still used in conjunction with pred, but it does appear to enable people to get to a really low dose.  I don't know if it's been determined yet whether it can eventually replace pred altogether, but at the moment patients still take pred even if starting Actemra really early on.  In GCA it sounds like they still don't trust it completely.  We know pred can save eyesight and I gather there is still some caution regarding not using pred at all, as maybe no one knows the risks to eyesight.  I think a number of people have posted in this forum about being able to taper successfully after going on Actemra although they'd had a lot of trouble before,  Again, I haven't heard if they've been able to discontinue pred altogether, but Actemra should shorten the duration of GCA and/or PMR.  I know Eileen knows a lot more and she'll correct any misinformation I might inadvertently be passing on. 

    • EileenH
      EileenH DebbieHurts

      Posted

      It is probably worth asking - it helps reduce the dose of pred as it actually acts on the reason for the inflammation. In the US the company are offering financial assistance to eligible patients. 
    • jan_37704
      jan_37704 EileenH

      Posted

      Any idea how long MTX takes to work or is it like a lot of things and variable depending on the person taking it. I have had 12 weeks and not noticed a lot of difference to peripheral joint pain as yet. Luckily no significant side effects at all. Thanks Jan 
    • EileenH
      EileenH jan_37704

      Posted

      In RA it is said to take up to 6 months to make a difference. In the case of PMR it won't make a difference to the PMR itself but it may allow you to reduce the dose of pred further than you have been able to before. However - there are no guarantees of that and it was said in the original study it takes up to a year to observe an effect.

      I'm assuming if you say you have peripheral joint pain your doctor thinks it may not be PMR? Joint pain isn't really common in PMR.

    • jan_37704
      jan_37704 EileenH

      Posted

      Hi Eileen, It is all too confusing. Initially I was diagnosed with PMR Nov 2017 and at same time I had a sore Rt wrist and L shoulder joint by end of clavicle was a bit swollen so the Rheumy Registrar wondered RA and put me on Methotrexate. Then pain did not improve much and they increased meds to Sulfasalizine and Hydroxycholriquine. I developed much worse PMR pain over Easter and past 3 weeks and was seen by Ass Professor of Rheumy who decided it was not RA but atypical PMR and ?? Vasculitis and or GCA and started me on 60mg Prednisone - I have fluid in both wrist joints with ultrasound and the Rt one aches - I have a sore area on outer Rt knee and not sure what it is. This Professor has taken me off Hydrox and Sulfasalazine. I have had 7 days of Prednisone at 60mgs and they want me to reduce to 40 tomorrow but I am still too sore so will give them a call on Monday to see what they say. CRP went from 52 to 28 with a week of 60. What a miserable condition this is and so variable with symptoms
    • jan_37704
      jan_37704 EileenH

      Posted

      Thanks for article - not been good on 60mgs and supposed to go to 40 a couple of days ago but didn't.  Took 50 this am and off for bloods and will call Rheumy tnrw. CT of body and apparently vessels is on 10th May - can't come soon enough - will keep in touch - thanks Jan 

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