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Methotrexate

Posted , 9 users are following.

dee2418
dee2418

Hi,

Can I ask please if anyone on here has been given Methotrexate?

I was diagnosed with PMR and Fibromyalgia over 18 months ago then got a GCA diagnosis last summer. I've been on prednisoone from the initial diagnosis but every time I get to 7mg I go into downward spiral.

January saw me down to 7 mg (again) but then pain and headaches hit me again so back to hospital ESR and CRP both way up and back up to 40mg pred.

Saw the rheumatologist on Monday who has now prescribed Methotrexate. He's told me to reduce preds again by 5mg every 2 weeks till I get to 10mg then 1 mg a month reduction.

I'm now feeling flu like symptoms and am also feeling very sick so GP has given me anti sickness pills but to be honest I'm totally fed up of pain, tests and tablets. I know  there are a lot of people worse off then me and I try to keep it in perspective but................!

0 likes, 14 replies

14 Replies

  • Anhaga
    Anhaga dee2418

    Posted

    You know, it sounds to me as though you need to stay just above 7 mg for a little while, or wherever you feel well.  It takes a while for the body to adjust, especially below 7 mg as that is where your own adrenal glands have to start working agin, and they can sometimes be pretty sluggish!  It doesn't make sense to me that you are now being fed more drugs, although I know the doctors are afraid of keeping us on pred too long.  But you need what you need.  I'm sure others will be along soon with more complete advice.
    • dee2418
      dee2418 Anhaga

      Posted

      Many thanks for your response and I'm inclined to agree with you on staying above 7mg but my GP insists I have my bloods done every 4 weeks and directs me from there.

      What's conflicting is my rheumy says reduce but if you feel unwell then go back to the dose you felt well on and stay on that for a while. I told my GP this but her response was that she gives me the prescriptions! having said that, I told my GP today that I was given Methotrexate and she was quite pleased with that.

  • rrobinson75
    rrobinson75 dee2418

    Posted

    I am so sorry you are having such difficulties.  I started taking Metholtrxate in December because I couldn't get below 10 mg without feeling terrible.  It has taken several months but I am now down to 7.5 mg of prednisone and doing pretty well.  I am never completely free of pain, especially under my collar bone but am so much better than I was.  I was terrified to start the Metholtrxate because of what I read but to be honest, I have had no side effects. My blood work is good and I am able to get to 7.5mg.  I am hoping to work down to 5 mg.  Hope this helps.  Hang in there! Take care. Roberta 
    • dee2418
      dee2418 rrobinson75

      Posted

      Many thanks for your response, I'm quite heartened that you're doing well and I guess will plod on taking all the drugs. I haven't read maybe all I should do about Methotrexate because it tends to scare the pants off me if I goole anything but the rheumy did give me a leaflet on it, I told him it must be a bad drug if he has pamphlets on it!
  • iellen32
    iellen32 dee2418

    Posted

    First of all I feel sorry for all your current symptoms and the discomfort they bring to you.

    Flu like symptoms are familiar to me since they were the very first symptoms of this ordeal.

    So if you are having them you need to do the tapering of your steroid for the level you feel comfort , increasing it now,

    I am telling you this just through my experience.

    Hoping you will get over of this stage were you are now , stay well and let's know how everything is evolving.

    🌸

    My rheumy as major part of doctors want to take us to lower doses of the steroid and they prescribe pain killers to solve a symptom that's is clearly due to the inflammation.

    To exercise, to keep moving the most you can helps immensely and of course the proper diet selecting anti- inflammatory food / I know you know, just saying though,

  • EileenH
    EileenH dee2418

    Posted

    If you were given a GCA diagnosis only last summer then to be fown to 10mg by now is actually very speedy. There are many rheumies who would say that MTX won't help and has no place in GCA management. 

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

    Read the "Bristol paper" in these links.

    Under Kirwan's approach you would now be just about at 10mg for a year after starting on 40mg last summer - a level at which you seem to be OK. It is the reduction below there that is leading to problems. Maybe a discussion of this approach might bear fruit with either your rheumy or your GP? 

    There is a definition of madness: repeaing the same action and expecting a different result.

    Perhaps a second opinion? Where are you?

    • dee2418
      dee2418 EileenH

      Posted

      Hi Eileen,

      Sorry but I've not been on PC for a couple of days as I've been feeling horrible with flu like symptoms.

      You kindly posted the reduction for me last year but GP won't have any of it. 

      I was put on 60mg preds last May (I think) for GCA then got down to 7mg by December then Rheumy put me back up to 10mg, got down to 7mg again in January and GCA hit again as well as every joint hurting.Back to hospital and back up to 40mg. ESR and CRP were well up.

      Saw rheumy last Monday who said reduce by 5mg every 2 weeks till I get to 10 mg then by 1 mg a month, also gave me Methotrexate.

      I did tell him I was sick of it all and just wanted my life back. I don't think I'll ever be back to how I was but I just want a better quality of life than I've got now.

      I'm in South Wales.

      Dee

    • EileenH
      EileenH dee2418

      Posted

      Are you sure it is "flu symptoms" and not the GCA you were diagnosed with just a couple of months ago resurfacing? Flu-like symptoms are common in GCA.

      I can only assume the rheumy you saw on Monday does NOT think it was GCA and hasn't at any point because the reduction they are using is unlikely to work for GCA and is very likely to lead to a flare. 

      I'm sorry - from experience we know Wales can pose a problem with finding competent doctors. If your symptoms return I can only suggest that you go back to the hospital who dealt with the GCA in January and tell them the entire story in the hope they will find a specialist who will deal with it sensibly.

      Have you no choice of GP?

  • iellen32
    iellen32 dee2418

    Posted

    Hi Dee I sent you my reply and as zi can see it is still waiting to be posted for some reason I don't know,

    Hi Dee, I told you on the reply that the flu like symptoms were my first ones at the very beginning of my ordeal .

    I told you that based on my experience you will have to go back to the level is steroid you feel comfortable. Doctors prefer to prescribe pain killers instead..After the steroid being adjusted you will do the tapering slowly, slowly.

    Exercises, proper diet - I know you know it all,

    Stay well 🌸

    • dee2418
      dee2418 iellen32

      Posted

      Hi Ellen,

      Many thanks for your response.

      The flu llike symtoms have been a killer, add to that complete loss of appetite so not much energy and also feeling sick most of the time has made me feel really miserable and crabby............even the dog has been hiding from me!

      Hopefully it can only get better.

      Dee

  • FlipDover_Aust
    FlipDover_Aust dee2418

    Posted

    Hi Dee

    I started on MXT just before Xmas and have had no noticable side effects. I've been able to get my pred dose down from 20mg to (as of today) 7.5mg (we'll see how that goes this week!) I have Fibro too and I take Lyrica for that. 

    Given you have GCA I would have thought a dose of 10mg was doing very well!

    As Anhaga says, at 7mg and below your adrenals have to start working so it is a bit of a shock to the body (one I'm not looking forward to in the next few weeks). But I'm guessing that most of us on here would advise you to take what you need v. what the Drs want.

    • dee2418
      dee2418 FlipDover_Aust

      Posted

      Hi,

      Many thanks for your respone and great that you've had no noticable side effects.

      I've got PMR, GCA and Fibro too so I'm  a loser before I begin.

      My Doctors view is that she gives me the prescriptions so I have no option but to do as she says! I did have a moan to the rheumy though and he said he'd write to her so hopefully she'll listen to him.

      Dee

       

  • Daniel1143
    Daniel1143 dee2418

    Posted

    My doctor prescribed methotrexate to help me ease off prednisone.  It had no effect on me, and afte reading up on its side effects, I realized I was playing with fire. Remember that none of these drugs are a cure.  They only mask symptoms.  So I got off methotrexate. Prednisone is bad enough without doubling down.  My view, anyway.
    • dee2418
      dee2418 Daniel1143

      Posted

      Hi Daniel,

      I really don't know which is the worse of the 2 drugs so will give it a month and see how I feel. I try not to take too many painkillers though I do take Gabapentin daily and also Tramadol when it gets too bad.

      Dee

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