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PMR and Methotrexate

Posted , 9 users are following.

Kassiebeetle
Kassiebeetle

Have had 3 doses of methotrexate 5 mgms per week with no difference noted in symptoms. Interested to hear if others on Mtx have noticed any difference in the PMR and what those differences are and were you able to reduce the pred any quicker. I did not want to go on the methotrexate but agreed to trial it for a month of 2. I have not noticed any changes. Thanks

Kathy

0 likes, 28 replies

28 Replies

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  • phillip11645
    phillip11645 Kassiebeetle

    Posted

    Didn't do much for me at 15mgs week (plus folic acid) except total lack of energy and hair loss so I tapered down and stopped after about 4 months.  Sounds like many others had similar results.  Instead, I increased prednisone from 10mg back to 15 mg for a bit to relieve symptoms then began the dead slow reduction of it.  Just going to 9 mg now with no issues.

     

    • Kassiebeetle
      Kassiebeetle phillip11645

      Posted

      Thanks Phillip. I suspect that many will see no changes but I want to have some ammunition for my specialist when I see him in February. Did your hair come back more curly?
  • MariGrace
    MariGrace Kassiebeetle

    Posted

    My 4th dose of methotrexate was yesterday.  My Rheumatologist told me it would take up to 8 weeks to get into my system.  In some research I did earlier today, it said 3-6 with 12 doses seeing changes. 

    We'll see. Thankfully, no side effects yet, except hair loss but that could be prednisone, too.  I've not been less than 30 mg a day for 6 months and on 60 for over a month. 

    The doctor told me that I'd not get off the methotrexate and will likely stay on a low dose of prednisone, if I can begin to reduce.  Reduction has not worked so far.

    Methotrexate was the last medicine I wanted to take.  My  condition continued to deteriorate no matter what was happening so there really wasn't a choice.  

    Let me know how you are doing. The side effects of prednisone are considerable and I'm growing oh, so weary of them.  To think of even 10 as a low dose makes me hope the methotrexate works.  It is supposed to lessen inflammation. 

    It would be good to read of other member's experiences with methotrexate.  

    I'm never going to give up hope of coming off of both medicines someday.  

    MariGrace

    • Kassiebeetle
      Kassiebeetle MariGrace

      Posted

      Hello MariGrace. Thanks for your reply. It is unusual to be on so much pred for such a long time. Are you pain free now? When were you diagnosed with PMR?

      Do you think the MTX is making any difference? Yes I would like to hear others stories. Yes, the side effects of Pred are frustrating. I have diabetes and cataracts and weight gain. Not nice. Keep your chin up.

  • Dave-California
    Dave-California Kassiebeetle

    Posted

    Hi Kassie,

    I started MTX in addition to Pred over three years ago in an attempt to reduce significant 'flares' and increases in SED rate - the MTX commencement dose was 25mg once per week.

    I was informed by my rheumatologist that in a similar fashion to Prednisone 'very slow' reduction, that MTX will be a similar slow reduction.

    After three years of MTX, I was down to 5mg per week and my rheumatologist identified that it was now time to stop taking MTX as it has little or no effect at the 5 mg level - the body doesn't need it at that low level.

    Based on my experience and the information that my rheumatologist provided, it seems likely that if you are only on 5 mg per week there will be little or no effect.

    Hope this info is of assistance in your procedure.

    Dave

    • Kassiebeetle
      Kassiebeetle Dave-California

      Posted

      Hello Dave. Long time on the MXT. Did you have any significant changes with the PMR or reduction of the pred? I do agree my dose is a very small dose of MXT.

      Thanks

    • Dave-California
      Dave-California Kassiebeetle

      Posted

      Methotrexate is considered a disease-modifying anti-rheumatic drug (DMARD). These types of drug are also called immunosuppressive drugs or slow-acting anti-rheumatic drugs.

      ​Based on discussion with my rheumatologist, it seems that MTX is used for the rheumatoid arthritis field and it is not known exactly (based on many long term test programs) how methotrexate works in rheumatoid arthritis, but it can reduce inflammation and slow the progression of the disease. So, rheumatologists use MTX in PMR treatment to assist patients with inflammation (flares), but they do not use MTX to replace Prednisone that has totally different functions.

      MTX has certainly assisted my ‘flaring’ since I started taking it, but also the “slow” Pred reduction seems to have the same influence – so, who knows what effect the MTX really has.

      I just finished with my MTX a month or so ago after I reached a reduction to 5mg from the start point of 25mg, and now I’m waiting for a couple of month of stabilization (recommended) before I know if ceasing MTX is OK related to my ‘flare’ issues and my current Pred dose of 4.5 to 5 mg.

      It’s a mystery !!

  • EileenH
    EileenH Kassiebeetle

    Posted

    I think it probably takes a bit longer than 3 weeks to notice any difference and part of the difference may just be smoothing out flares. But that seems a very low mtx dose - or is that your pred dose?
    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      Morning Eileen. The dose for MTX is 5mgms. I just checked the bottle to be sure. My pred dose is 12mgms. Had bloods done yesterday will be interesting to see what the CRP is. My ESR is always normal. How is Hubby going with his stuff? I still have pain in my thighs and shoulders and am very tired . I have started taking the pred between 4-6am instead of 1am to see if that makes any difference. If not I shall up the dose. Take care. Kathy
    • EileenH
      EileenH Kassiebeetle

      Posted

      We're done and home since Saturday, just had to drive down on Monday for the last session and to be "signed off". Home for 2 weeks and then heading to Malta for 3 weeks - where I hope it is warm and I can sleep...

    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      Sounds lovely going to Malta. Some friends of mine went there a couple of months ago. They loved it. Have a wonderful time. You both deserve it. Cheers Kath
  • Misha452
    Misha452 Kassiebeetle

    Posted

    My 1st Rheumatologist said it would take 6-8 weeks before I would see any effect from the Methotrexate. I took 7.5 mg Methotrexate for 6 weeks and then 12.5 mg for 10 weeks (also took Folic acid to help with the side effects)  I had a lot of fatigue and it didn't improve my PMR symptoms at all so I stopped it. My 2nd Rheumatologist wanted me to increase the Methotrexate and he said it takes longer than 16 weeks for the Methotrexate to have an impact. I felt much better when I stopped taking the Methotrexate and am now on just 6 mg of Prednisone.

    • EileenH
      EileenH Misha452

      Posted

      I'm at a loss - these are all factors in using mtx for rheumatoid arthritis. Which is totally different from PMR and GCA which are vasculitis problems. I do wish someone would explain their logic to me. I hope they have some!!!!

    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      I think Dr's get very focused and feel obliged to treat patients even though they know it is not going to change any thing. I remember being told of a lung cancer pt in her 30's who had a hole in the side of her chest which was draining pus. Her specialist would not allow her to be transferred over to the Palliative care team and he continued to treat her with chemo. So sad. I wonder if it is about time we asked the specialists for copies of studies that show MTX works for PMR?

    • Kassiebeetle
      Kassiebeetle Misha452

      Posted

      Thanks for your info. It is very helpful to hear what is happening with others. I hope more people tell me their stories so I can get a good idea of their response to MTX. Take care. Well done getting down to 6 MGM's.

    • EileenH
      EileenH Kassiebeetle

      Posted

      There are only about 3 studies using mtx in PMR, they aren't particularly powerful as they are small and they all have different results.

      One done in Italy found that while at the time of the study patients were able to manage on slightly lower doses of pred, when they did follow-up 5 years later the incidence of pred-related side effects was no different. Which begs the question "why bother?". 

      A fairly new piece of work shows that the rates of effects claimed to be side effects of pred are not significantly different for PMR patients and age matched people who had not been on pred. The link is here

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      under Polymyalgia Rheumatica and Steroid Side Effects: New Findings

      They just can't cope with not being able to cure. Hope I never meet such an egocentric idiot.

    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      Thanks for that. I shall read the study. It is 5am can't sleep sun is up I may as well get up. I might do some cooking!!!!

    • EileenH
      EileenH Kassiebeetle

      Posted

      Dark as a bag here - and wil be even worse next week once the clocks change...
    • Kassiebeetle
      Kassiebeetle EileenH

      Posted

      We have daylight saving in Australia but Queensland doesn't participate. We had a referendum years ago in QLD and the no vote got up. The farmers thought it would affect the cows and milk production. The non regional areas want it. They thought about dividing the state into 2 areas but never happened.

    • EileenH
      EileenH Kassiebeetle

      Posted

      It's all so silly - doesn't make any difference to the number of hours of daylight! By the time it gets to xmas here it is dark both ends of the day anyway. Though they had a winter in Scotland where they didn't change the clocks and I would go to work in the dark and watch the sunrise from the lab at nearly 10am and then it was dark before we went home - horrible. But further south it isn't so unpleasant.

    • Anhaga
      Anhaga EileenH

      Posted

      The further north the less helpful it is.  It's quite nice, each changeover, for about three or four weeks, and then it makes no difference, you're back to getting up in the dark and all that happened was the evenings got even shorter....

    • EileenH
      EileenH Anhaga

      Posted

      Exactly. Though if they stopped doing it - what would the moaners do every spring and autumn! They'd not have an excuse...

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