Have managed to reduce down to 1 mg per day.....using the very slow method. Feeling fine now no PMR pains, tiredness gone, energy good. This is after 3 years of PMR. Have had hitches and bad times along the way but have stayed on a dose, and rested if I felt I needed it, to avoid the yo yo situation. Dr says blood is now "Normal" so thinks I should be able to stop the steroids as I am feeling so well. Hoping it has finally gone! This support group has helped me so much- thank you anyone who has replied to me.
Will keep you posted on my progress over the next few weeks.
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suzieh
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Wonderful news, Suzie. I went from 1mg to zero Pred via 0.5mg just to be sure - either that or after 5-6 years I was hooked! You must be so relieved to be free of all your symptoms - just remember that it can take our bodies up to a year to totally recover after being on steroids. Lots of good luck wishes for a PMR-free future.
Ha! I have feel 'hooked' at times.....now feeling as if I can get off the steroids. Will do it slowly though 1/2 mg at a time. Not taking a risk at this stage or taking it for granted.
Thank you especially for your wise words throughout. PMR is awful to deal with and family and friends don't really understand.
Thanks! One of the best things is waking up feeling ok. I can now get straight out of bed if I want to. At the worst point I'd wake but feel awful for ages, needing to take pills straight away and then having to stay in bed for at least an hour before I had enough energy and motivation to get out of bed.
Great for you, I a, down to 2 which I have been on for a month now, but feel so tired in the afternoons, great in the mornings, gym walks etc, but come afternoon I feel shattered, hate that, when does that start to go, did you have any vitamins?
I do have Gca/Poly, and had to start on 60 msg a day
Perhaps it will take me longer. But Fab for you, well done.
I do take a multi vit each day and extra vit c. I used to feel worn out pm but not any more!!! Hopefully you will recover gradually too, you will know when the time comes. I felt much better once I'd got down to 2.5 mg per day, and now normal at 1 mg. Hope you find it works that way for you too
Gave in to it .......and sat/ dozed/read/left jobs. I am fortunate as retired early and can do more or less what I like.
Husband happy to drive most of the time so journeys were/ are also nap times! Actually felt so rough/ tired at times I don't think I could have driven much....only short hops
Oh thankyou Suzieh that so helps me, I have been trying to fight Tim by going for afternoon walks and pottering, but after felt so so tired as soon as I sat down I nodded off.
So I will listen to my body and rest in the afternoons, I am retired too, so luckily no problem,
Don't forget to join Club Zero when you get to the end of Pred. You will find more useful comments for us ex steroid folk, not all nice I must warn you, but hopefully helpful! Good luck with the final wind down.
Hi suzieh, I found a link that takes you to the parent site for the forum: pmr-gca-northeast.org.uk
Hopefully you can access the CLUB ZERO forum without having to be a member, but if not just sign up with the same I'D as this site! You will find lots of posts relating to us ex-steroid takers which are highly relavent I feel! Good luck, raymck
I hope so too..... It does seem to leave some folk and not others. My Dr says the steroids will mask other things so I hope I don't fall apart when on zero. After all I am 3 years older!! 61 now
Dead slow...stop for a while, took 6-7 weeks to get to each new dose. Now 1/2 mg 2 days; 1 mg 5 days- next week 1/2 mg 3 days, 4 days 1 mg. (lower doses spaced out alternate days)
If I feel worse I'll stop on this for a while
Having said that very optimistic as I feel " normal" now!
Congrats Suzieh. I'm currently on 9mg so still a long road ahead but it is wonderfully encouraging when I hear of people getting to 0. It is frustrating but I am holding myself back and doing it slow and hopefully sure
Congratulations Suzieh! We love to hear about a situation such as yours. It gives us all hope. Thank you for sharing. As for the reduction: At this dose--who cares? If you wish you can do it in increments of a quarter of a mg.
Hi Asbeck... How can you get 1/4mg. I have a pill cutter and used this when I was at 12.5mg but that was very fiddly and most of the time not a clean cut. The 1mg pills I have now (I'm down to 9mg) are even smaller than the 5mg so I think it would be inpossible to 1/4 the them?
Hi Since reaching 2.5mg and aware of 10% one day a week advice gained here,I have used a sharp knife and shaved a little off the 1mg tab-not entirely accurate but at least ensuring tiny reductions, now down to 1.5 and am prepared to take several more months at this rate. Until I joined this valuable group I expected follow GP and be off pred after 2 years, then realised how long it takes to get off lower doses! 2.5 years since diagnosed, pred has really worked for me with only a few hiccups so quite happy to be patient and go carefully for longer . Good luck
Fantastic news. Well done. So encouraging for us with a long way to go. Its so tempting to try and reduce quickly and with the help of this wonderful site I'm on
6.5 after 1 year. Doctors generally just don't understand.
You have done well to get to 6.5mg in a year. Take it easy for a while to make sure you are stable before going lower. Seemed to take me ages to get down and feel "normal". Good luck.....
Well done you, I'm also almost off the Pred. I have about 2 months to go until zero so I'm praying I dont have any problems until then. Just wondering as I've been taking 1mg for the last 6 weeks (with 2 more weeks to go) could I just stop now or is it still worth waiting and going to 1mg one day then miss a day for the next 2 months as recommended by the rheumy. My last 2 bloods have been fine. Thoughts anyone?
I have only ever had Dr advice...no rheumy. I am currently taking 1/2 mg some days 1 mg on others. Going down very gradually to 1/2 mg every day. The tablets are easily to cut with a sharp knife. May even do 1/4 mg after I've reached 1/2 mg every day to make sure, before attempting some pred free days
If you think about it. 1 mg per day = 7 mg per week
So pleased for you, just started my journey - diagnosed 7 weeks ago with PMR and TA so enjoying the full effects of steroid symptoms - lovely to hear there is light at the end of the tunnel. Very best wishes to you.
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6 months on zero pred?!!!!
Finally reached zero preds!
Zero day prednisolone and goodbye GCA
