Made it, after three years of up and down - finally reduced to 5mg for the first time and it holding - no GCA flare up.
And the sun is shining.
very well done Mrs UK keep up the good work ..Summers coming, .. can only get better
..
Mrs UK
you are always such a help to us...
we are now CHEERLEADERS FOR YOU!!
YEAH!! you go girl!!
such good news!
Hi Mrs UK,
Wonderful news, I know something of the struggle you have had over these last years, and I am delighted for you. Good luck and good wishes for further progress.
Hi Mrs UK
I also want to join those who congratulate you! Just take it easy now when trying to get below 5 mg. As you have seen in "my story" on your group´s website, it took me a year before I could get below 5 mg but when I started the slow tapering I described there, it went much better. Hang in there!
Ragnar
And i join everyone in wishing you the grit to carry your plan out. we have all been there and know the angst...............cheers to you!!So how's it going? Are you below 5mg.? I started on 40 mg close to 3 yr. ago & am now down to 4 1/2 mg. I'm very tired when I first decrease dosage but doing okay. I'm also on methotrexate. Could it be that we're actually wearing this out before it wears us out? Good luck to you!Bluegrass
Well, I am sometimes hesistate to say anything but in June, I dropped to 4mg and had no problems. Waited till last Sunday and thought here goes and took a drop to 3mg.
I organised a quiet week this week as each time it takes sometime to adjust.
What you may not know is that I have GCA and do not have PMR. So although I have terrible problems with back pain due to the steroids both my medics are hoping that as I drop - the back pain will ease and I will be able to walk more.
Both medics think that I may not ever be steroid free - but who cares I am on a low dose now and hopefully it will keep the GCA in control and other things will resolve them selves. It was nice of you to ask.
That is interesting that you mentioned the back pain. My back and neck pain has increased since being on steroids but all the other PMR symptoms are staying controlled. My rheumy says that the steroids can play in that. Guess you just proved her right. I'm still at 12.5mg along with methotrexate but will start tapering 1mg at a time next week after vacation. I will be going slowly this time after trying to decrease 2.5 and ended up in the emergency room.
Congratulations to you both on the steroid decreases. Has your moon face faded with the reduction? My face feels so puffy when I wash it.
Glad to hear that you seem to be doing well. I was aware that you had gca. I do also & quite frankly that's my biggest concern as far as any flare ups. I had gca for months then the pmr started. I know what you mean about it all being so unpredictable that you really take it day by day. My doctor has me reduce the prednisone by 1/2 mg. and wait at least 6 wk. or more before reducing again. After being on this for so long, it surprises me that my body's adjustment to lowering by such a small amount makes such an impact on how I feel. I honestly think I'm doing great-I've had no major problems with any of my medication. We've had a very hot humid summer & I'm looking forward to fall weather-I try not to complain but I sweat so much that I'm ready for a break from it. Have a good day & hope things continue to go well for you.bluegrass
Just a quickie, the body, unfortunately gets to like pred, and when you take a drop, you are experiencing withdrawal symptoms, that is why when we take a drop, we try and organise a light week and then take the drop, if after five days (when the withdrawal seems to go away) the drop has worked, if not - then back to where you were.
Now that applies to PMR people mostly, but we GCA people have withdrawal as well, but what we have to watch out for is return of GCA symptoms - if they come back, up the dose straightaway. The first time I had to go back to 60mg, the second time 40mg, but in both cases I was able to reduce quickly back down to 10mg. My medics insist I carry 60mg with me and if I have another flare - go up, if necessary to 40mg and get to them asap.
It must be very difficult for you having both and I really mean that, but I also know a lady who has both and is on 1mg and has been for the past year. Like me, her Rheumy is not prepared for her to go to nil. Anything below 5mg is classed as a low dose. So I am a happy bunny at present.
Good Luck and try Evening Primrose Oil or tablets or Sage extract for the sweats - works for quite a few people.
Mrs UK
I wish you well, but why are you reducing prednisone after 5mgm by 1 mgm. The percentage you are dropping is huge . All previous posts and my personal experience , found that even 1/2 mgm sometimes has to be reduced by alternate days. Then at least stay on that reduced dose for at least a month.
We have all been on prednisone for many years and our bodies need time to readjust slowly. After the first visit to rheumy 4 1/2 yrs ago , the emphasis definitely to me (in pain) seemed to be reduce ,reduce reduce and we will have you off it by Christmas!!!! Ha Ha.
But what I did not get , as I really believed i would be cured by that first Christmas, was to listen to my body and not to continue reducing to the point of pain, hibernation, tears. Soooo much learnt over the years, and still sooooo much to learn. We have PMR or GCA , but present in so many different ways, and are in different stages of this journey. But one of the recurring posts is reduce very slowly after 5mgm.
Please , take reduction slowly. thinking of you all Zali
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