Got down to 4.5mg Suddenly started a flare. Advice please
Posted , 14 users are following.
It’s taken me 4 & half years to get down from 30 to 4.5mg. Now I’m suddenly having a dreadful flare. I’m in so much pain. Tried just increasing to 10mg but I’m still in pain. I’ve only just got rid of my moonface. I really don’t want to go back there again. HELP ME PLEASE
0 likes, 34 replies
calimushka wenhaz
Posted
I’m sorry you’re starting a flare. I know how discouraging that is myself.
Is your Rheum willing to prescribe Methotrexate in place of Prednisone? That worked for me for quite a long while.
Best wishes,
C
wenhaz calimushka
Posted
EileenH calimushka
Posted
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.
calimushka EileenH
Posted
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.
EileenH calimushka
Posted
calimushka EileenH
Posted
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.
wenhaz EileenH
Posted
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".....
EileenH calimushka
Posted
EileenH wenhaz
Posted
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.
wenhaz EileenH
Posted
Thank you. That really helps. 😘
Michdonn wenhaz
Posted
Good luck, think positive and try to smile. ☺️
wenhaz Michdonn
Posted
I think you are right Michdonn. I'm going to go up to 15 tomorrow for one week and see what happens. Thank you.
Michdonn wenhaz
Posted
r.d.s26296 calimushka
Posted
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.
r.d.s26296 EileenH
Posted
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
🤗
EileenH r.d.s26296
Posted
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.
r.d.s26296 EileenH
Posted
Thanks Eileen
I'll go to my eye doctor asap. Does sound like an infection. 👍
Gaud, I feel I'm falling to pieces. 😀