thank you so much for advice on methotexate.

[Fieldofdreams]

Dear PMRGCA friends, thank you from the bottom of my heart for all your wise and kind replies. I wasn't able to get on line yesterday and I was feeling quite poorly with head pain. I will answer everyone individually later but I have all your advice with me for my appointment which is wonderful. I started on 60 mg of Pred in August and was reduced by 10 within ten days which I believe was too soon, the another ten and ten until i was at 30 each time with nasty withdrawal. Then I learnt of the slow taper. I went down 2.5 mg each time to 25 which took 10 weeks. I have never been pain free and, only told to take paracetamol, which yesterday didn't do anything. I had a biopsy late in the day and the site of that causes pain. I am self employed and work in the arts and do a bit of travelling. I cant stop the jobs that I have on as I will lose my career, house etc. I do manage GCA with a different rest work balance but the constant temple pain, ear and jaw some days just grinds me down as I cant forget bout it and just live life. I am not moaning as some of you are so much worse off than I am and I do count my blessings every day - (see earlier posts) - some days when its raining and you have to go to hosp and talk about it with someone new you just feel a bit low. I wish I could take my cat with me lol. I am very unsure about taking metho now esp as it may give me liver problems. If there was a way to stop the head pain i would be happy. Huge huge thanks from a very grateful FOD - I will report back later. C xx

[Stella3]

I feel so bad for you that you have he GCA head pain and jaw pain. Was your biopsy a temporal biopsy? I’m not sure how much prednisone you are taking but it does not sound enough to get rid of the symptoms of GCA. Getting rid of the disease is another matter but it sounds as though your doctors are not managing your prednisone very well and you are still in pain. Check back with him. Paracetamol will not do it.

[PMRpro Ambassador]

Paracetamol won't ever help GCA pain - it is doubtful if NSAIDs would either, they rarely help in PMR. I'd say you need a doctor who really knows more about GCA - because the level of pain relief you get at the start is your guide for the rest of the journey and it sounds as if the inflammation was never got under control at the start and what you really need now is a higher dose of pred - either before you try anything with mtx or in addition.

However - you are where you are and mtx may be worth the try. They will monitor you for liver effects so don't worry so much about that aspect.

[Marijo1951]

I'm appalled that you are suffering pain of this intensity, especially as you have to work. My pain went by and large after I took my first dose of pred and, apart from the two flares when I was reducing to 25 mg, I've only had very mild occasional twinges. I hope you soon find a dosage that really helps you, whether it's with or without the methotrexate.

[SheffieldJane]

Don’t let the thought of replying to everyone become an additional drain on you. Everybody understands. That precipitous reduction is at the route of your pain I fear. You need to be settled on an adequate dose for several weeks before reducing.

[Janstr]

My GP said I should be virtually pain free & increased pred to get rid of remaining PMR pain in my neck & shouders, but the GCA ( in my case low grade) headache persisted. ( though the jaw pain resulting in inability to eat & scalp tenderness had gone). The Rheumotologist added aspirin to the mix & that helped. I understand from PMRpro that aspirin used to be part of the treatment for GCA, but is no longer recommended .

[PMRpro Ambassador in reply to Janstr]

"My GP said I should be virtually pain free" - in his dreams!!!!!!!