1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR and methotrexate dose

Posted , 5 users are following.

JW89
JW89

Hi all,

Last time I saw rheumy he decided to start me on MTX as I was unable to get under 10mg of prednisolone without a flare.  It was interesting that at the start of my pred journey, he stated that MTX was the 'big gun' and best to be avoided if possible... but after almost a year of pred, he changed his tune saying that longterm pred at 10mg was definitely riskier and less favourable than MTX and whilst I may have adverse side effects from MTX, I would definitely get them from pred if I continued at the level I was on.

So I was started on MTX 12.5mg weekly for 2 weeks at the start of October (I guess to check how well I tolerated it) and increased to 15mg every week for the last month.  No adverse side effects.  Rheumy encouraged me to keep trying to taper down from 10mg of pred and my next appointment with him is mid-February.

Well, I know it's perhaps a little early to feel any benefits from the MTX as it can, I'm told, take up to 12 weeks to have any affect... but I've gone into a major flare and have reluctantly been increasing my pred over the last few days.  I've gone up to 20mg again, which is the highest dose I was taking when I started on pred.  But it's still not enough to control the pain/aches etc.  In fact, I've developed a new symptom for me where my buttocks hurt and walking is so hard.  I feel like I need a good oiling! LOL!

So (finally!) to my two questions:

Those of you who have managed to reduce pred dosage when using MTX, what dose of MTX works for you on and what pred dose are you still taking or did you come off it completely?

Also, do you think my plan to continue increasing pred dose by 2.5mg every other day until I get the current flare under control is a reasonable approach?  Or should I jump to 5mg increases?

I am so grateful to all the contributors on this fabulous forum.  I really don't know where I'd be without all the support and information I glean from here.

JW

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH JW89

    Posted

    I do think you need to discuss this with your rheumy - because if mtx isn't doing the job, what is the point of taking it? To gain an overall advantage is actually said in the literature to take up to a year - so I'm a bit surprised he handed you mtx and told you to reduce. I would have thought that getting you stabilised on mtx first made more sense. Then try to reduce.

    On the other hand - is this "just" PMR? Could your "flare" actually be myofascial pain syndrome? Or piriformis syndrome? Or even something else.

    And then there are mtx side effects - joint and lower back/back pain should be reported at an early stage.

    • JW89
      JW89 EileenH

      Posted

      Unfortunately my next appointment is 3 months away. I've tried getting an earlier one, but you know what the NHS is like. I'm also considering going private for second opinion, but I don't have private healthcare & am worried new consultant will ask for barrage of expensive tests.

      Re MTX... I gather it's still early days. I've only been on it for 6 weeks and it can take another 6 to start being effective. Maybe the dosage will also need to be increased - hence question on what dosage others have found helpful.  Maybe what I'm perceiving as a flare could be MTX side effects... which could explain why increasing pred hasn't helped so far.  Out of desperation I've increased to 25mg pred today, but am wary I'm heading for pred side effects if I stay at this level for long.  Next test is to see if not taking this week's MTX helps eliminate the new pains.   I'll at least talk to my GP.

       

    • EileenH
      EileenH JW89

      Posted

      This is what concerns me - and why if you can't get an appointment yourself, your GP should at least make an effort to get you one. Did your rheumy not assign you are rheumy specialist care nurse? If you are on methotrexate he should have since GPs can't use it themselves and don't have much experience. And as I said - those side effects could be classed amongst the sort the consultant needs to know about. If it gets any worse I would be inclined to go to A&E. - and I don't say that lightly.

    • linda17563
      linda17563 EileenH

      Posted

      Glad this posting has come up, because I`ve just been to doctor because of pain , severe lower back/hip/leg pain.  I`m still waiting for MRI appointment to rule other things out, which I`m glad about....she said that she  will write also for me to see a different Rhemie, one of those that you got the names of for me a couple of weeks ago (thank you)....... she then went on to say, I would think they will want to get you off steroids (5 years and counting) and offer you a DMARD......possibly MTX...to which I replied, not if I can avoid it....I saw what it did to my sister with RA.....so my question is, do other DMARDS from what you know.....work for PMR as well?

      ​Also, regarding a high cholesterol reading I just got  recently(7) she said she wouldn`t consider statins because I don`t have other factors to warrrant that, but to try a diet to lower it....but said while steroids push it up it would be difficult....

      Thanks again....

      ​

      ​

    • EileenH
      EileenH linda17563

      Posted

      Do other DMARDs work for PMR? No, not really and certainly not on their own - if they did they would seriously look at using them instead wouldn't they! Dr Hughes in Chertsey (who I trust) says the only DMARD he thinks is worth it is leflunomide - but it doesn't get a mention in the latest recommendations for the management of PMR. I know people who have tried - with every hue of result from severe life-threatening side effects (one) to mild side effects that went with a lower dose. Did it allow a lower dose of pred? Mainly not significantly as far as I remember.

      As for the cholesterol/statin question - what a sensible GP! Someone on another forum was handed a statin as being "high risk for a heart attack" with no other justification besides a cholesterol of 7...

    • JW89
      JW89 EileenH

      Posted

      Well I managed to get an appointment with my GP (after a bit of pleading with the receptionist).  Not being very knowledgeable about PMR or MTX, she thought that if increased pred hasn't been helping  over last 7+ days, then perhaps the latest symptoms are to do with MTX and suggested I reduced pred (not too fast) and skip next week's MTX dose to see if that made any difference.  In the meantime, she'd given me some high dose co-codamol (60mg 4x day) to help with pain, which I can already notice is helping and feeling less despondent.

      I also rang the Rheumatology Nurse.  Haven't met with them yet (appointment not until January!) and was grateful they called back today... though answerphone says they will get back within 2 working days.  Although they've not met me yet, they could look up my records.  Last blood test on Tues showed elevated inflammation markers.  They wondered if I had flu!?!!  (Most definitely not.  I think I would know if I had.  Stupid question!!)  They didn't like GP's suggestion of skipping next week's MTX dose and will talk to the Rheumatologist when he is in clinic on Monday and see if he wants me to come back in for more blood tests.  

    • EileenH
      EileenH JW89

      Posted

      If your bloods are elevated - that would normally suggest you are flaring. It would fit if you have reduced your pred assuming that the mtx would avoid a flare - and it isn't working for you. It doesn't for some people and there is no getting away from that. 

      I think it was Nefret who had that experience. She was put on mtx and was able to reduce her dose for PMR - only to develop GCA which she is convinced was due to the lower dose of pred letting it in under the radar so to speak. I know someone else who was put on mtx and lowered her pred dose - only to then develop a lovely PMR flare despite the mtx.

      Strange - if your nurse was so sure it could be flu shouldn't she have perhaps suggested missing the mtx? Because the usual instructions are not to take it even if you just have a cold. The impression I have always gained is that missing one dose because you aren't well isn't the end of the world - so I'd have said your GP's idea wasn't a bad one. But then - none of us are experts so ...

    • JW89
      JW89 EileenH

      Posted

      I'm curious.... do you have any stats on what percentage of people with PMR go on to have GCA?

      Glad to report the high dose co-codamol did the trick and significantly reduced pain so I got a reasonable night's sleep... though when I took another dose this morning, it made me sick.  GP did warn me it might.  :-(  

      Rheumy nurse is going to speak to rheumy on Monday to find out if he wants to see me, get more bloodwork or just skip MTX for a week and see what happens.  I'm expecing he'll say the latter.  It's such a game of guesswork.   But I'm feeling better than I did 24 hours ago, so I'm not complaining (too much!). :-)

       

    • EileenH
      EileenH JW89

      Posted

      It's said about 1 in 6 of patients who first present with PMR go on to develop full blown GCA. It doesn't have to be quickly - there are people on the forums who had PMR for some time and only developed GCA a year or more down the line - and while taking pred so a low dose does NOT protect you although there are plenty of doctors who will try to tell you it will.

  • Guest
    Guest JW89

    Posted

    that sounds tough. If I were you I would get your inflamatory (blood test) markers done, contact your help line or ring your consultant's sec and explain, I think he/she would prefer to see you rather than wait till feb. goodluck

  • FlipDover_Aust
    FlipDover_Aust JW89

    Posted

    This sounds to me like just bad timing. You have had a flare at the same time as starting MTX.

    I'm on 20mg of MTX weekly, started in Dec 15, and have been able to reduce from 20mg of pred to (as of this week) 6.5mg. The reductions in the first couple of months were quite significant but I've slowed right down as I've gone under 10mg (no more than 10% each time). So it's worked a treat for me. No side effects.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.