Got down to 4.5mg Suddenly started a flare. Advice please

Yes my rhuemy did prescribe methotrexate, but my body couldn’t cope with the side effects. I came off against his wishes (he hates steroids) but I felt so much better in myself. My flare started about 3 months after coming off methotrexate 

Methotrexate does not replace steroids in PMR - it may make the pred work more effectively but the chances are you will have to take both and for many people it makes no difference at all, merely adding extra side effects for them.

There is also considerable thought that when methotrexate works well it was either a case it was not PMR or not just PMR that had been labelled as PMR. PMR also comes in different versions it seems - some may respond to mtx, others don't.

Fair points for consideration, Eileen.  As we are each individual in our biology and illness there is no “one size fits all” medication.

Mtrx  monotherapy worked quite well for me keeping me in a durable remission for nearly two years at 30mg/weekly.

My PMR diagnosis was confirmed by Mayo Clinic in NYC.

Thank you for your perspective.

How did the Mayo confirm the dx?

Thank you for your interest Eileen.

I merely posted an idea to Wen in reply to the request for help.

I’m not interested in further discussing my own diagnosis and/or treatment.

Thank you kindly.

Hello Eileen, My rheumy said Methotrexate would make coming of steroids a lot easier, but he also said that once I had come off the steroids I would need to keep taking the methotrexate for around 2 years. This really wasn't an option for me because of the side effects. It has taken me 2 years to reduce from 10mg to 4.5 (during which time I was diagnosed with bowel cancer, had the tumour removed, and had 6 months of chemotherapy) Each tiny reduction was taken very slowly without any problems, until I got impatient and reduced from 4.5 to 4 in 2 weeks.

When the flare started I went back up to 5 but found no relief. I then tried 7.5 The pain eased for a few days but then came back even worse. I am now on 10mg but fear I may need to go up even more. I am so depressed about all this. All I get off my GP is "well if you can pull through cancer, you can pull through this".....

I beg your pardon indeed - all such info is of use to others. The forum exists to help everyone.

You will get there - getting down to 5mg in a couple of years is good, I know it doesn't seem much like it but most people take 18 months or more to get to 5mg. You will get there - just not yet.

Thank you. That really helps. 😘

Wenhaz, do yourself a favor and increase to get ahead of the inflammation do not let it accumulate, I did and end up going from 7 mg to 30 mg. My Rheumy was rushing me, but no longer.

Good luck, think positive and try to smile. ☺️

I think you are right Michdonn. I'm going to go up to 15 tomorrow for one week and see what happens. Thank you.

Hope the 15 mg does the trick, get yourself stable and drop back down in steps. Good luck. ☺️

That's a shame you feel you can't tell us about your diagnosis...especially that you are using other medication than prednisone 

By us disclosing our individual problems,  it most definitely can help someone else get a handle on theirs.  

We don't know who you are Calimushka so it's not going to be "gossip"...

Have a nice day. 

Mornin'. Eileen

Just to keep you in the loop 😉

I'm on 22:5mg preds for the past 6 days. From 25mg. 

I'm still feeling stiff legs in the morning together with a very slight heavy feeling in my arms. During the day it passes. 👏

I'm taking the preds at 3am , that's half an hour after eating a banana and then go back to sleep after..

My  eyes are extremely swollen and my GP said I look like I've had Botox.  😀

I feel like I have a mucus all the time in my eyes, but again I put it down to the pred...

I mentioned in an earlier post that I'm 75:5

 ( but young at heart) and have a long list of autoimmune problems.  Including lichen Sclerosis...

I'm still perspiring an awful lot, but I think that it's a combination of the thyroid medication...together with all the other meds. 

Anyway Eileen thanks so much for all your help and advise. You are a star and greatly appreciated..

Cyber

🤗

Thank you! Could the eye problems be hayfever (though with pred it shouldn't be) or an infection? But the most likely is blepharitis - google it.

Thanks Eileen

I'll go to my eye doctor asap. Does sound like an infection.  👍

Gaud, I feel I'm falling to pieces.  😀