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hello its Madmags (chapel allerton)

Posted , 8 users are following.

margaret22251
margaret22251

Hi some of you may remember me from two and half years ago.

My doctor said i had pmr and was really helpfull and eventuallyi hafd to see a rhymi.

I was sent to Chapel Allerton after asking many times to go there.

Anyway to cut a long story short, a Dr Sarah Bingham said after examing me that i did not have pmr and was told to reduce, shown the Elieen method and she was so interested she took mine to give her patients.

Well now after reducing from 10mg to 2mg (took 7 months to get there) it has been confirmed i had pmr and now have got mid foot OA, Rheumatoid arthritis, as i cannot do any thing, simple things like, seatbelts, in and out of bath, washing hair, chopping vegs, etc etc.

So medication i am now to be taking is Methotrexate, and folic acid.

My question is why am i taking this, is it any benefit, and does anybody take it on this forum please that could give me advise.

Many thanks

Mad Mags

 

0 likes, 25 replies

25 Replies

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  • gillian_25383
    gillian_25383 margaret22251

    Posted

    Hi,I was put on methotrexate just under two years ago (folic acid is to reduce side effects).They did this because I could not take prednisone.Like you I also have inflammatory arthritis.Touch wood not too much bother with methotrexate but be aware it can take several months for full effect to be felt so you may have to take alternative pain relief for the short term.Good luck
  • EileenH
    EileenH margaret22251

    Posted

    Welcome back Mags - I was just wondering about you the other day and what had happened in the end!

    So are you saying they think you have rheumatoid arthritis that presented as PMR? It does happen.

    Methotrexate is the first line drug for RA. It is what is called a Disease Modifying AntiRheumatic Drug, a DMARD. It suppresses the immune system and somehow stops the disease process in RA that leads to damage to the joints. You need the folic acid because it stops the body process to do with folate and it causes some side effects including mouth ulcers - giving the patient folic acid helps prevent that. The methotrexate takes some time to start working - and in some people it doesn't always do so but then they try the next drug on the list. 

    There is a really good RA forum on here too - they'll answer your questions about it.

    • margaret22251
      margaret22251 EileenH

      Posted

      Morning Eileen  i hope you are well, and it is lovely to hear from you.

      I think that is what he meant, as i asked him had i had pmr, and he said yes but now it is RA.

      Also i had a ultra sound scan on both my hands and wrists and it was found on my right hand i have something called Synovitis. S i am now back up to 5mg of pred and the Methotrexate once a week to see if that helps.

      When i was on 5mg of pred my hands and wrists were fine.

      I still get the pain in my temple and eyes, but he does not seem concerend about that.

      I think that at last they may have found out what is aiing me, hopefully. It has been a long struggle to get there, but i know from this forum i have been lucky compared to some of you.

      It is good to know you are still helping and advises all of us, i personally do appreciate it.

      Many thanks Magsbiggrin

    • EileenH
      EileenH margaret22251

      Posted

      Synovitis is part of PMR - Sarah Mackie did a study that showed it.

      But whatever it is - as long as the treatment works that is what REALLY matters!

    • margaret22251
      margaret22251 EileenH

      Posted

      Thank you, this test was done by my doctor, and as you say as long as the treatment works thats fine by me.

       

  • pauline36422
    pauline36422 margaret22251

    Posted

    hi margatret  i was just thinking about you a couple of weeks back  wondering what  had happened  to u   know i know, so i will now read your  replys    xx

     

    • margaret22251
      margaret22251 pauline36422

      Posted

      Hi Pauline nice to hear from you cannot believe its two and half years since i started with all this times flies, hope that you are keeping well, my little grandson is nearly two now, we dont see him often but when we do its lovely. It was worth waiting ten years for.

      Take care, love Mags xcool

       

  • tracey81846
    tracey81846 margaret22251

    Posted

    I was put on folic acid because I was very anemic due to the steroids and this seemed to cause them more worry than the pmr. Fully expect at some point to have to retake, even though I eat iron rich foods.I do wonder why I have never been sent to a rheumatologist ,it was mentioned early on in the diagnoses but never actioned.
    • EileenH
      EileenH tracey81846

      Posted

      Are they sure it is the steroids causing the anaemia? Anaemia is common in autoimmune diseases.
    • Mrs_CJ
      Mrs_CJ EileenH

      Posted

      I too have very low iron. Next GP appt I'll ask him for a blood test to see where my ferritin is these days. My GP told me to take iron pills but he didn't say to also take folic acid. He didn't say much about it actually, like how long to take them, when I should have blood tests for this, etc. Should I be taking iron and folic acid and perhaps ever other things to help raise my iron?

      Tracey81846, are you taking just iron and folic acid?

    • EileenH
      EileenH Mrs_CJ

      Posted

      What are you on? You don't normally need folic acid with pred but you may have something else going on they haven't yet checked for. If someone is anaemic to the state they need pills the doctor should be checking there isn't some thing causing it - like bleeding in the gut, it can be due just to very small polyps or piles for example but have been going on for a long time. Many women are anaemic pre-menopausally because of the regular monthly blood loss but once they are menopausal it should improve if that is the cause.

      Has he checked your B12 levels? If you have one autoimmune disorder - you may have a second.

    • Mrs_CJ
      Mrs_CJ EileenH

      Posted

      I think the low iron was caused by the small amount of meat I had been eating....and not eating more of the iron foods, like beans and lentils. But looking back over my blood tests over the last decade my iron has always been on the low side. 

      My GP is not good about checking things out so next appt the end of this month I'm going to prod him for more blood tests and for more information. I've had low-ish ferritin tests for decades and my doctors have always just shrugged about it. I think it's time to figure out why because I'm always tired too.....and that was before the PMR hit!

      i am currently on 3 1/2 mg of prednisone and about halfway with DSNS to 3 1/4 mg. In my 5th year of PMR. 

      Thank you for your advice about this. 

    • EileenH
      EileenH Mrs_CJ

      Posted

      Low ferritin and low iron indicates anaemia - seems about time your doctor sorted that out for you! 

      Ferritin is another acute phase reactant, like ESR and CRP - strange yours isn't raised with PMR

  • judy93591
    judy93591 margaret22251

    Posted

    Hi, Yes I take Methrotrexate, also.  It was given by Rheumy and it is to help wean off Pred.  I am down to 2.5 Pred.  I also take Folic Acid.  I didn't reduce as slowly as the DSM, but I have had good results.  Rheumy said probably on Metho. for a year.  Hope this helps, Judy in MI, USA

    • margaret22251
      margaret22251 judy93591

      Posted

      Hi Judy, many thanks for your information, can i ask have you had any side effects from taking the Methotrexate, if so could i ask what they were.

      Ihad got down to 2mg from 10mg pred, so was a bit dissapointed that i have had to increase it, but i know these things take time.

      I did not know that it was to wean me of pred as the Rheumy never said, but saying that i was asking a lot of questions he started laughing at my hubby as if to say what have i got here.

      Many thanks, hope you are well today.

      Regards Magsbiggrin

    • judy93591
      judy93591 margaret22251

      Posted

      Hi, Margaret, no, I had no side effects from the Methotrexate, and am now on 2.5 pred and 3 Metho, fortunately, I haven't had any flares. Hope this helps. What a horrible surprise to develop this miserable PMR when I had been healthy and very active for 73 years!  Ugh!  

    • EileenH
      EileenH margaret22251

      Posted

      Mags - it is both in your case. For some people the mtx helps them manage on a lower dose of pred - it changes the way your body processes it. But it is also the first-line drug in RA. They have a list and usually you start with No 1, if that doesn't work, you proceed to No 2. And so on. They are what are called DMARDs, they stop the damage the RA is doing to your joints, but some work for some people and not others. You have to find the one that works for you - but at least there is more than one!

    • margaret22251
      margaret22251 EileenH

      Posted

      Eileen many thanks for this information i feel more at ease now you have explained far better the the Rheumy did, but he was good at some things, it was a new one this time.
    • margaret22251
      margaret22251 judy93591

      Posted

      same here, i was 64, and had done fell climbing and the three peaks all my young days, i miss that part.

      I do some walking, though recently with reducing i have not been able to do the smallest things. 

      Now, tho hopefully i will be able  to , and next week i am going to the lovely Lake District for 7 days, hopefully i will be able to do a mile or two.lol

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