Hi Everyone, It's like winning the lottery (not that I have) but I was able to do a 20 min walk today. The first in a very long time. I have tried twice before and only got a short distance because of calf muscles pulling/aching and my son was with me just in case I needed his arm. He came with me today and I was so over the moon, just a slight pull on the left calf and I sat on someones window sill for a tiny rest but then continued. No one knows what this means to me (or maybe you do). Having a choice is good but when you have no choice it's terrble. I was diagnosed November last but I think PMR actually started June/July last year. Started at 20mg and am down to 12.5mg and am hoping to go down to 10mg middle of the week. Any comments welcome and thank you in advance.
Well done to you Pat. Any definite signs of improvement is just wonderful and feels like a personal triumph ! I hope this is just the beginning of many. And summer is coming too . . . . Kind thoughts, J. x
I'm so pleased for you Pat, I was wondering how you're doing as I had missed your lovely posts to everyone.
Hope the reduction goes well for you 2 1/2 is quite a lot.
Take care
angelcake
Hello pat, it's great to hear that you are feeling so much better, infact so much better that you attempted a walk, good on you! Hopefully this will be the first of many.
hooefully you've been on on 12.5 for at least 6 weeks? And, during that period have not experienced any return of any PMR symptoms. It is indeed the next reduction from 12.5 to 10. However, if you want to be on the safe side you could always reduce to 11mgs for 6weeks, then 10mgs. Don't forget once you get yo 10mgs then follow Eileen's go slow and almost stop regime. I sort of follow this regime but only ever reduce by .5. Good luck pat, regards, christina
Good for you!! It is a wonderful feeling when we have these successes.
I have been on pred for 2yrs 2 mths and have been through 3 flares, all due to reducing either to quickly or to soon. I urge you, as Christina did, to take it very slowly because if you're not ready the PMR will bite you back and it's harder every time to get back to your management dose.
I wish you the best for both you new found freedom and in your reduction.
Hugs, Diana🌸
How wonderful for you to be able to take that walk! Keep on keeping on, and lots of luck as you reduce the pred--Barbara Y.
22 min tomorrow!!!!!
Know exactly how you feel - I was there 3 years ago when 5 min felt like a marathon...
Try the 2.5mg drop but if it is too much go back and try 1mg next time - it isn't a race!
No it's walk, sorry couldn't resist x
Juno thank you so much. I feel human again. Thank God for small mercies. Yes more walking to come. Easy does it. Thank you
Hi Angelcake, thank you so much. Yes a walk, what I took for granted and most times chose not to walk. But sure you live and learn (the hard way) I don't care. Thank you, one day at a time with no days off. I need to pace mayself and be sensible about it. Pat (((Hugs))))
Thank you so much Christina, yes a walk, an ordinary walk yet extraordinary because of PMR and didn't think it would ever happen. I know the reduction is a dodgy time going down to 10mg from 12.5mg, I will see. Tomorrow will be a better indicator from my walk today, so easy does it for me. Yes and I have Eileens reduction plan written out. Thanks again. Pat
I am so happy for you. Hopefully you are on the road to full recovery!
Oh Mrs. Mac, thank you so much. It seemed like Mount Everest and it would never happen, but it was so good to get out. I live beside the river Lagan and there are beautiful embankments, also the Botanical Gardens. I have had no flares to date but I take nothing for granted. I may go down to 11mg and yes I always stay on dose for 6 weeks or 6.5 weeks depending whats going on. Thanks again. Pat
Hi Barbara, yes it's a wonderful feeling to accomplish a very small thing, but yet a milestone that I am glad to have reached. Yes keep on keeping on. Onwards and upwards. Thank you again.
Oh Eileen thank you so much. Isn't it a wonderful feeling. There were times when I thought it would never happen. I was enduring life and not enjoying it, just getting through and accepting my lot. House bound, driving short distances just once a week.
I know what you mean about 5 mins feeling like a marathon. I feel as if I have finished the London marathon metaphorically speaking. I am going to rest tomorrow, don't want to push my luck. I am going to try the 2.5mg reduction and if its too much I will accept 11mg. Only for this site and yourself and other good people I wouldn't know where I would be. I am more or less doing this myself with the support from the forum. Seen Rheumy once. Oh and the new dr. about the new medication which wasn't new. So thank you and Bless you for all your knowledge and all the others on this forum. (((((((((Hugs)))))))))
Hi Phyllis, thank you so much. I feel as if I am getting a wee bit of my life back and it's wonderful. As much as I am optomistic I am also a realist. Easy does it and "take nothing for granted" Bless you Regards Pat
Pat, I am so very happy for you. I know what a huge accomplishment it is to walk for a bit. 😀
Good morning Pat ( or Gidday how are ya) How lovely it is to wake up open my emails and see that you have had a win!!!! A 20 min walk is fantastic. I think you may have inspired me to have a go on the treadmill. Might try 5 minutes. Have a lovely day. Slowly, slowly as they say.
Cheers
Kathy
Christina. I was just diagnosed with PMR Doctor gave me 5 mg with instructions take 1-2 prentizone daily. 5 mg isn't enough. May go to 10. My question is when people talk about reducing by 1 mg is there a 1 mg pill?
Hello barb, sorry to hear of your diagnosis. I have no medical qualifications at all so I cannot offer you any definitive advise but simply examples of how I am approaching my PMR and medication.
there are a few very wise members on this forum, Eileen and Mrs O just to name two, and many of us with queries always wait and value their advise and replies.
however, I will say this, if you have just been diagnosed with PMR, your Dr has prescribed the most unusual treatment plan. The first standard dose of prednisolone should be 15mgs taken daily in the morning for 6 weeks, then 12.5mgs for 6 weeks, then 10mgs for anything up to a year. Please google Bristol PMR plan, that will explain the tapering regime. When many of us get to 10mgs then follow Eileen's go slow and almost stop regime.
currently your 5mgs is simply not enough and it's not a surprise that you say it's not. I personally would up the dose to 15mgs and stay on that dose for 6 weeks, then follow the Bristol PMR plan till 10mgs then follow Eileen's regime. Also print off the Bristol plan and take it in to your GP, he/s needs to read it without delay because it sounds as if they are clueless as to how this condition should be treated, as it cannot be cured.
ordinary prednisolone tablets come in 5 and 1 mg. the 5 mg tablet has a central indented line that enables the tablet to be cut in half.
however, you really need to start on a proper treatment plan and as from tomorrow take the correct dose of 15mgs daily.
hopefully Eileen and Mrs O will read your thread and hopefully offer far better advise than me.
all the best, christina