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PMRGCAuk
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Rheumy and Methotrexate update

Saw the rheumy on Thursday and she listened when I explained my methotrexate experience. Outcome is I’m not taking it anymore!

I’m sticking with the prednisolone and tapering gradually. The rheumy did want me to reduce more quickly but I tried to give a good explanation of why this might not suit me! It did get a bit stressful and I was glad to get out of her room as my head was clanking ! Boy did I need a lie down when I got home!

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Hi,

Good news, at least she listened to you, and has agreed to stop the MTX.

Hopefully if she sees you are also reducing successfully, albeit slightly slower than she would like, she will leave you to do it your own way.

Good luck.

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That works for me!

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A listening rheumy is a gift!!!

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I’ve been in this journey 18 months now. Am trying to stabilise at 5mg a day, but still pretty aches neck and thighs in the morning.

A friend who also suffers with PMR has found MTX fantastic and keeps trying to persuade me to see ‘his man’!

After reading your experience I think I’ll just keep battling using DSNS.

Good luck.

Pym

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Pym

Just wondering - has your friend also been diagnosed with LORA (Late Onset Rheumatic Arthritis) if so Metho is the gold standard treatment.

LORA often seem to come along later in a PMR journey..................and is only recognised by some medics.

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Not that I’m aware of. I decided to keep on the more accepted route for the time being, perhaps until the 2nd anniversary anyway

Thanks

Pym

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I decided to stick with pred, but it is a very very personal decision. I did the simple math............side effects of pred 83, side effects of metho 16 and thought do I want to add more stuff to more body which was struggling anyway ...........however we are all different, grown up and able to make our own decisions once we have listened.

Me? GCA only and 5 years down the line............remission and now into 8th year.

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You worked your magic well done.We must speak up it is our bodies and we know how these drugs affect up.x

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Not sure it was magic but I managed to get my words out for a change! I’m usually 🙃 lol!

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Well done. It's often like my mute button has been pressed despite my good intentions to get my point across. 🌻

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What was your experiences with methotrexate that made you want to stop it? Thanks.

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Hi,

I developed a chesty cough, sore throat, chest pains and my GCA/PMR symptoms (headaches, neck,shoulder and upper arm pains)suddenly became much worse . I felt that all had been going ok but wham! Not a minor skirmish with Smaug the Dragon but a war!

I’m sure MTX suits many but for me , no. I’m sticking with the Pred and all is calmer!

I also understand that some of the results of the fortnightly blood tests were not in my favour either. So all in all, depends upon the person.

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