Those new to PMR

[Linny3]

Hi Everyone

Just want to say how much I enjoy this forum. It has really, really helped.

I wanted to say to new folks dealing with this disease; let prednisone be your friend. I have been scared of it since I began taking it. Have tried and tried to get below 10mg and I am pretty miserable most of the time with 4 major flares in 1yr 9mos.

I was decreasing very slowly and have tried the plan laid out here, but still had flares

After reading many of the posts from all the great folks here, I have come to realize my body wants to be on 10 mg of prednisone to have a somewhat normal existence.

The side effects can be miserable but the pain and stiffness is really worse.

I am trying to take better care of myself, worry less about the prednisone and go about my day. I will keep watch on all the side effects that can happen, but I'm not going to obsess about it.

I have developed; a spinal fracture= osteoporosis

the pressure in my eye is rising but is still in the normal range.

and my feet and legs swell a lot. Even given all that, I am the most content I have been in over a year.

Thanks again to all the lovely people here and Good luck to all those new to this disease.

Take Care

Lin

[HeronNS]

Now that you have reached this stage of acceptance you may well find that things progress more smoothly.

One of my favourite poems since I developed PMR:

Things Take Time by Piet Hein

Put up in a place

where it's easy to see

the cryptic admonishment

T.T.T.

When you feel how depressingly

slowly you climb,

it's well to remember that

Things Take Time.

[Linny3 in reply to HeronNS]

Thank you

[Nerak12 in reply to HeronNS]

Sooooo true. Wise words. X

[scats]

A lovely positive post. I still have to be reminded of this after 21/2 years.

I have the same problem with 12mg, my body doesn't like less. This is the third time of trying, but I will stick here at least until after my cataract op. in 10 days. Good luck.

[Jackoh]

I think " rolling " with this condition is really important but very difficult at times especially when things go pear shaped. The more acceptance we can muster the less stress we put on ourselves and this in turn helps us to be able to reduce slowly. All the very best for your future reductions. Good that as you say you're not obsessing about things and just looking after yourself and trying your best. Can't do more than that!! All best wishes xx

[Hidden in reply to Jackoh]

Even though l’m very accepting of PMR now (no choice) but my friends say aren’t you over that yet?..........

I’m on 7.5/7mg Pred, still on Methotrexate & trying to reduce despite the Fatigue & the Hot Flashes. But onward & upward as we say! 😄

[Jackoh in reply to Hidden]

That's so annoying isn't it! I get asked " Are you better now?"😬

[Linny3 in reply to Hidden]

Those cursed hot flashes. Can't figure out why they happen. I had pmr for over a year before I began having them. Not taking anything new in that time only the prednisone. These began right after the warm weather started this year and yet I wasn't bothered last year. Go Figure! It's not my age.

[Gaycreasey]

I completely agree with you Linny3. There are so many negative aspects to this interminable condition and it can become all consuming. Sharing with the good people on this forum can lighten those dark days by knowing that what you are feeling is not unusual and not life threatening. So many times I’ve opened one of the posts to find a discussion on something that I’ve been experiencing and not known what it was all about. The humour is so important to keep us all going so cheers everyone.

[Hidden]

Yes, there was a thread about driving/being a passenger & it was amazing how many of us have similar experiences.

It’s good to know we’re not on our own!