Posted , 25 users are following.
I have finally managed to get off Prednisolone. I seem to have more energy and my appetite has reduced so the weight is also coming down. I just hope I am not celebrating too soon. The last bit from 1.5 to zero has, surprisingly, been the easiest part. I'll post at a later stage to update. Best wishes to everyone on your journey.
0 likes, 41 replies
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daisylazy Silver49
Posted
Well done Silver. Hope all goes well from now on.
jillian92038 Silver49
Posted
Well done! You give hope to us all. look forward to hearing your 'tapering' story.
BettyE Silver49
Posted
Congratulations and best wishes.
After five years and more than one setback I finally got to zero more than five and a half years ago and have not looked back. Hope it's the same for you.
I found that I continued to feel better and better for around eighteen months after getting to zero and just the other day found to my surprise that I no longer needed to restrict myself to small watering cans. I felt really chuffed.
brian75018 Silver49
Posted
Great to hear this.I had pmr for a couple of years but have been off pred for maybe up to about a year with harly any symptoms. Best wishes.
Twopies Silver49
Posted
oh, im happy for you! do keep us posted--
diana21296 Silver49
Posted
CONGRATULATIONS.. and good luck!
lynda62707 Silver49
Posted
YEAH Silver......I'm SO happy for you!!!!😂😁🎉🎇🎆
keep up the good job!
i ended up having my bone biopsy early (LONG STORY)....should be getting results tomorrow or Tuesday.
please pray.
freda07782 Silver49
Posted
congratulations Silver, im down to a half but if i have an extra busy week i find i have to occasionally go back to one meg. Sometimes i wonder if I'll ever have the confidence to taper too nothing and be able to stay there!
still im very happy to be able to ger this low.
GOOD LUCK and keep well! Freda
mary19068 Silver49
Posted
Hi Silver49
Many, many congrats on reaching the end of a very long journey. Now you are at your journeys end enjoy the destination you were heading for.....very best wishes your way...
Michdonn Silver49
Posted
Silver49, that is great news best luck stay off Prednisone. That you are off Pred, gives us all hope.
Congratulations. 🙂
sandy08116 Silver49
Posted
Well done Silver. Welcome to the Zero Club! Hope you stay free.
Silver49
Posted
Thank you to everyone for your kind words and good wishes. I can understand the reluctance to go from .5 to zero. I admit to having been slightly hesitant but decided to go for it as I waken with no aches and pains. Admittedly, I go to bed with aches but I have put that down to doing more. In fact I have found the more I sit around the stiffer I am and the answer is to move more. I suspect my muscles are still a bit weak as it has taken me just over 4 years to reach this stage. It will take me too long to reply to everyone but I appreciate the encouragement and thank you Betty E for the hope that this will continue on the up. Lynda, I hope your results are good and I wish you all the best for the future. Michdon, you are an inspiration. Keep smiling. I do and often get a response from strangers. It's a two way approach to life. Eileen, last but not least, I am especially grateful to you as we all are for your knowledge and words of wisdom. Perhaps we will manage to meet one day if you are in this area. I'm not going away and will continue to follow the forum. Best wishes to you all and thank you everyone. To all those still ploughing on I sometimes felt that I would never reach this stage but decided to make the most of what I could do as I did not want life to pass me by on the Pred journey.
missmagwumps Silver49
Posted
That is such good news to hear on this site....rare but brilliant...well done you. I am down to 2 mg this week and doc has suggested I try 1 mg next week and that's it...fingers crossed I will be shouting from the roof tops like you in two weeks....happy days x
Silver49 missmagwumps
Posted
Thank you, misswagmups. I reduced by .5mgs as the dose lowered and I did it by the DSNS method although I didn't follow it completely when I reached 1.5 as I felt so good but I did go more slowly than 1mg a week towards the end. I hope you are successful as it is a good feeling to finally be off.
EileenH Silver49
Posted
Brilliant - and fingers crossed it lasts xxx
freda07782 EileenH
Posted
Hello Eileen, glad you wrote as i was getting worried you were not feeling well because i hadn't seen any recent replies from you. your writings are always most interesting and informative. I for one am most grateful for your patience and all the info you so generously shared with us especially when one is newly labeled PMR . Once diagnosed then what.....
i was in shock when told to reduce by 1 mg a month. i remember saying but that would take me two years! HOW MUCH I HAD TO LEARN!!!!
OK i'll quit now while I'm ahead.
thanks . Freda
EileenH freda07782
Posted
I've been around, I see the forum every day but it has been very quiet recently. The other forum is manic! I have been ill - had a pacemaker fitted 2 months ago after they discovered (at last. I suspected it) I was having asystoles (pauses in heart beat) of up to 7 seconds! I hadn't realised they were that bad ...
Silver49 EileenH
Posted
Gosh, Eileen, I hadn't realised it was so bad. I know you mentioned the pacemaker but I hadn't appreciated the situation. So glad it has been picked up and not before time.
Michdonn EileenH
Posted
Sorry to see that you have been feeling poorly and had to get a pacemaker. Good luck better living through modern technology. All kidding aside hope you are back to our old self again shortly. Do you think I should post that article on Statin and PMR or is it old news? Hope you get well soon!
freda07782 Michdonn
Posted
yes please post the article I'd be interested to read it. Freda
jillian92038 EileenH
Posted
So sorry to hear you are having a rough time Eileen and hope the pacemaker has had the desired effect. Both my mother and father in law had one fitted after their 90 th birthdays with the advice that it would not extend life just make it better. No way -both had another great 7 years !!
I hope you realise how much we all appreciate your support and knowledge. I found it a great comfort when I felt I was floundering- and a couple of times since. Take care .
Michdonn freda07782
Posted
Okay Freda, here is the article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3402515/#s1title , I just found the article yesterday. I don't that Statins they don't agree with me. Good luck 🙂
EileenH jillian92038
Posted
Seems to have stopped the wobbly waves and I have also been able to reduce the pred dose at last - I was having to take a higher dose to manage the waves 😉
Silver49 EileenH
Posted
That's great news, Eileen. Glad you are able to reduce the Pred as well.
freda07782 Michdonn
Posted
thanks for sending me that interesting article on Statins. I too don't take them now but did years ago on my doctors recommendations based on family health history. I've never been a pill taker and when i started getting bad leg cramps stopped taking them. I believed it more important to watch my diet than take pills.
a friend once told me in a restaurant she could eat creamy buttery cakes as she was on statins!!!!! work that one out!!
I hope they continue doing their research!
thanks again for bringing this to my attention! Freda
EileenH freda07782
Posted
That's what a lot of people think - same with diabetes, I can eat carbs because of the drugs!
Michdonn EileenH
Posted
GREAT NEWS Eileenh, with help and knowledge and encouragement you have provided; you are do some breaks and good fortune. Hope this is a start of a bump free decline of dosage. Thinking positive for you. 🙂
Michdonn EileenH
Posted
Freda, Eileenh, I found 57 years ago this month that I was a diabetic and through years I have also found out you have to stay on your diet. Currently I eat an organic anti-inflammatory diet, not much fun, but I am in the gym three days a week working to get in condition for the next ski season, which is great fun. I guess we all have to set are priorities. I remember when I could not walk and you Eileenh inspired me to get moving and I have not stopped. Prednisone helped, Diabetes medications help, but in the long run the individual has to want it and do what is necessary, that doesn't include a piece of Creamy Buttery CAKE! 🙂
Twopies EileenH
Posted
such good news, eileen! you take such good care of us, im very happy to hear youve been able to reduce and that the seas are a little calmer.
jillian92038 EileenH
Posted
Calm waters ahead!
jean_b EileenH
Posted
best wishes eileehH so glad you getting sorted with pacemaker you are valued so much by us all thank you and hugs x