Hi all

[Missmylife]

I have had PMR for 12 months and would really like to get off the steroids. I’m going to try this method and hope that it works. I miss my life and miss riding my horse

[Rose54]

Just be patient you cannot hurry this illness and life does get back to normal, you do need to do your part as well 12 months is a very short time.

Thay say 2 to 9 years now so you are still in the early stages

[Missmylife in reply to Rose54]

I understand that it takes time but it has affected my job and like most of us I need to work

[Rose54 in reply to Missmylife]

Totally agree

I worked full time for some time but after a flare and going back up to 15 a day dropped my hours and have done this for last 18 months .

I am lucky as able to retire in July but I do know that health wise it will be the best thing I have ever done.

Good Luck

[Constance13]

"Acceptance" is one of the most difficult things to achieve.

12 months? I've been on pred for 7 years and MUST accept! Fighting it won't make it go away.

[Missmylife in reply to Constance13]

12 months isn't long and I know others have had it a lot longer than I have

[Soraya_PMR]

What ‘method’ are you going to try?

[Missmylife in reply to Soraya_PMR]

Dead slow and nearly stop

[Soraya_PMR in reply to Missmylife]

Ah-ha! Yes that’s a wise choice. Slowly does it!

What dose of pred are you on now? What was your start dose?

[xdbx]

I understand! We can’t rush this though and PMR sets the pace. Softly softly and DSNS have been working for me.

There are also other lifestyle factors we can attend to or maintain that have really helped me: sleep, nutrient-dense diet, exercise, hydration, stress management and support network (like this fab forum!). I find these also help to give me a sense of being in charge of my health and well-being as much as possible.

Knowing I’m doing everything I possibly can, whilst accepting I have a serious long-term chronic illness, keeps me optimistic even through the darkest days and helps me stay present and enjoy what I can in this moment.

I started on 15mg 2.5 years ago and now on 4.5mg - will soon be ready to try DSNS to 4mg...

Wishing you well 😊

[PMRCanada in reply to xdbx]

Well said xdbx!

[SnazzyD]

It surely is very difficult to lose doing the things to their fullest that make your heart sing, or even at all. The Pred is the thing that stands in between you and worse things developing. Work means, money, identity, social contact, purpose etc etc and losing that is a heavy blow. From personal experience trying to learn to accept it and work with it is all irritatingly Zen and happy clappy, but it’s essential. Personally, at 56 and not working, I now wrestle with the conundrum, do I hope to get back to what I was, even if in a much reduced capacity, or do I just let go completely and wait for whatever turns out? Not being strong and not being able to earn money is a tough one and to be so due to an unseen not well defined condition can be frustrating.

[Hidden]

Sadly Missmylife we all do 😔

What dose are you on now & read below your going to use DSNS

Good Luck 🍀

Keep in touch.

MrsN

[Hidden]

You have to find comfort and pleasure in the day to day otherwise you aren't living. It's possible to live a happy life with a chronic illness. It is tough working. I spent about 10 years with herniated discs, fibromylgia and diabetes and I I couldn't adjust that work schedule because as you say we need money (and purpose). Eventually I burned out. I went off sick and spent 6mths in bed eating only porridge. I was 46 and I never got back to work. I had to start accepting it was a long term thing. I regret the time I only thought about feeling well and only thinking of things that were "my life" then as valuable. Once I realised getting to feel better is a process I started to mentally feel better. Wellness isn't a product we can consume by wishful thinking. If we could wish ourselves well the world would be a better place! It wasn't overnight, but I started seeing beyond my limitations and focussed on what I can do.

I hope you start to feel better. Pat yourself on the back everyday you get through work. I don't envy your position at all.

[Sailormo in reply to Hidden]

you are so right,I have had pmr for 3yrs now it's very hard accepting what you can do now.It shakes your self belief especially after flare ups.I have learned so much from all of you've made such a difference in my life Happy Days.

[suzy1959]

You have all my sympathies.

I got PMR at 52years, 7 years ago. I was in denial at the implications of this condition and continued to work as hard as I could as my husband had just been made redundant ( the trigger for my PMR). I fought it all the way and refused to give up my hard won successful private practice ( counsellor). Eventually I had to concede that I couldn't keep going at that pace- I kept having flares and loads of minor infections. I cut down a bit for a couple of years and then I was forced (again) to accept that I was not coping and cut down to working a day a week. All this time, I kept hoping that it would go away soon so I could get back to my life. After another year, I realised that I need to stop altogether as I had also developed serious OA in both knees and a hip. It was as if my body was saying "no" and I wasn't listening , so it upped the ante and kept getting worse.

Acceptance of "what is" is hard, especially the acceptance that we are not in control! So you keep fighting it for as long as you need to . It is no use any of us telling you you need to "accept". You have to find your own way to it. The lucky ones, and you may be one of them, never need to face this the way I have had to because they get better relatively quickly, so let's hope you don't have to!

Good Luck!

[lesley2015 in reply to suzy1959]

Suzy1959, my story similar to yours only 4 years in , fought it first year and slowly acceptance krept in, life completely changed, yes I miss my work, doing everything at 100 miles per hour but try and accept the changes. Got careless and now flared and back to 30mgs - it's a long frustrating journey!

Best wishes to all

[Thomas45]

I had PMR for 3 years and 7 months before I stopped the steroids. At the end end of that time I wasn't as well as I was before PMR started. My leg muscles are much weaker than they used to be. I can't just get out of a chair without pressing down on the chair. Last week I was at a friend's, sat on a low seat by a coffee table. To get off the seat I had to kneel on the floor and press down on the table to lever myself up. This may just be down to aging, but I suspect PMR was the culprit.

[Noosat in reply to Thomas45]

Probably both I find the same thing. However, I am down to 3mg of prednisone from 20mg to 3mg in 4 months. I know it is fairly fast, but when I got to 7mg, I started doing half a milligram. Although I have had problems tapering, they are no worse that the prednisone problems, so I am continuing, with the realization that I may at some point have to increase dose.

[Thomas45 in reply to Noosat]

That's a fast reduction.

[lesley2015]

Just take care and be patient, you will get there- I only ride a little now, when well enoifh and have to listen to my body. Enjoy being with the horses though and chills me out - summer makes it easier on my body too 😊

Good luck

[scats]

I sometimes think that it might be easier to have to accept we will never be able to do a thing again from the beginning. We all miss our lives but we travel in hope because we have been told things will improve, but some of us are let down time and again and the repeated disappointment is very difficult to accept. I am well into my 4th year now and having a major flare again, back to 15mg again. PMR is not life threatening and there are far worse conditions but it is frustrating and difficult to live with sometimes.

Good luck with your journey.

[Purplecrow in reply to scats]

Scats, You are so correct. We are always holding onto hope, but I suspect, after 5.5 years, this may be the new normal😖

[arthur463]

I do know how you feel. I lost an eye to GCA and was put on 60 mg - partly to try to save the other eye. - and they have demolished me physically. Now after 17 months I am down to 3mg, and really worried about a flare. Lately I have been taking it very slowly, having read the experiences of others on here. 0.5mg reduction a month.

What of your horse? Can you at least get to the stable and spend time with him/her? . You should, if you can. . maybe therein lies your salvation. . What do you think? . If you don't own the horse, then get to the stables anyway, and find a horse to just spend time with.

I grew up on a farm, and I am utterly convinced that animals, especially "advanced" animals like horses and dogs - have knowledge that we cannot even dream of. - So go and talk to your animal. I mean it. I could tell you more about this, and the knowledge of animals that my Grannie had.

And softy-softly on the preds!

Take care

Arthur