Three years in

Hi All thank for the helpful post over the years they have made it possible for me to cope with this condition . During the last eighteen months I have been referred to a Rhumy at Manchester after a flare up I have managed to reduce my prednisone to three and a half mg on occasion when I'm stressed or have overdone things I take a one off five mg tablet which takes approx three hours to kick in. Still doing 1hr walk in the morning which helps. The next step seems to be methotrexate I have the leaflet there are lots of side-effects for very little gain, anyone had experience with it

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  • di-bach, you have done really well to get as low as 3.5mg, but if, as you say, you need to take a 5mg tablet on occasion then it does rather sound as though perhaps the 3.5mg dose is a little too low for you for now. Perhaps you need to consider increasing back up slightly for a bit longer than just one day to really stabilise things, thus avoiding the need to slip in an extra dose on occasion.

    I can't for the life of me think why anyone would consider prescribing Methotrexate for a patient on this low dose - that is usually reserved for patients who are continually unable to reduce from the higher doses. Have you been given a reason for this suggestion?

  • Hi Celtic you could be right there I have dropped from 4 mg preds to 3.5mg for over five months now and only had to take the extra 5 mg on two occasion, I'm normally ok it's just when I've had a active day the day before. I was going to say very active but that doesn't happen any more. The reason the methotrexate was offered was because I have been on steroids for more than three years and I will probably be on them for life. I was also asked why I hadn't had my bloods done, but I explained I know when it bothers me. No blood test for the first six months on 20mg a day mind you I did feel like superman fo a while

  • Hi again Di-bach, that's a most unusual reason for Methotrexate being suggested! Many of us are on steroids for much more than three years but I've never heard of anyone being prescribed Methotrexate when they are on such low doses as you are on at present. It is a steroid-sparing drug and, as I said previously, some doctors prescribe it in cases where patients are continuously unable to reduce from the high starting doses without encountering flares in the inflammation.

    If you are continually finding difficulty in reducing from the dose you are on at present, one test that you could request is the Synacthen test to see whether your adrenal glands have started kicking back in with their pre-PMR supply of natural steroid (cortisol) which will have been suppressed by the long term artificial steroid (Pred). In rare cases where insufficient cortisol or no cortisol is being produced, then the patient would remain on 5mg of Pred indefinitely.

    At the same time as requesting the Synacthen test, if you are someone who had raised markers of inflammation at diagnosis, then it would be a good idea to get the ESR and CRP blood tests repeated from time to time as well - they can be a useful guide together with your symptoms as you reduce.

  • Thanks for advice Yes you are correct I will get the blood test done and request Synacthen test thanks again

  • I was given methotrexate by my doctor and tried it for 3 months but the side effects were awful so stopped it.

  • Hi thanks for the reply after reading the information sheet given to me by the Rhumy I don't think I'll fallow her advice on taking it at present .

  • Hi Di- Bach, tried methotextrate - 10 MG's for 4 months . First day difficult, then better.

    It did help -- less headaches and less overall inflammation. I felt better for the first time in some years.

    I was getting it by injection and some of the medical office conditions didn't sit well with me (cleanliness, etc), so I started with another rheumatologist (which I have found seems part of having the rare conditions of GCA/PMR). The new rheum wasn't in agreement with the use of methotextrate.

    It had been tapered to 3mg -- so ending wasn't terribly bad.

    I had read about the side effects of methotextrate -- I wasn't anxious to continue it.

    It is one of the treatments, which I believe helped with the inflammation and is a "steroid-sparer" as some think.

    Luck with it, if you chose and with the illness.

    Hope you feel better. Best, Whittlesey

  • Thanks for the information it seems different Rhumy s have different ideas ! Well I will see what the blood counts say ! Thanks for the reply hope your on the road to recovery

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