Just for fun today I looked back at the very first post I made to this forum. Wow! Just about everything I have ever needed to know was contained in the ensuing thread. Thank you, thank you, everyone who's been helping me along this road, especially Eileen, also Ptolomy, and others. ❤
Maybe you should put the link in - would be interestingto see what was discussed
Same here. The best resource EVER and thank you Eileen!
I agree with you. There is so much information available and other places to look. I've also learned some important things not to do ... such as not messing around with Prednisone dosage without consulting with my Dr. Thanks to all of you.
Are you PMR free, if you are congratulations. I would not have had a clue about PMR without this forum, Eileen you give such positive feedback. The one I make sure I always follow is when I am out I always have some predesolone with me just in case. So far I have not had to use it,
Yeah it is a definate journey with this illness I'm at 10mg of pred after a slight set back and feeling like sitting on the edge but doc wants to go to 9 in 2 weeks then 8 and sit there. I know I've got way to much going on in life at present to be doing any reducing but see ow I go. And yes I love to read everyones posts has been of help and good health to all. Yesterday I had a complete bed day and today I'm up and about what a difference it makes that rest day.
Yes, I carry it in my handbag in case I was involved in an accident or if I mistakenly forgot to take a dose!! (not happened yet thankfully). Also wear a purple rubber band on my wrist saying I am steroid dependent. No good shutting the stable door after the horse has bolted!
The original thread:
https://patient.info/forums/discuss/prednisone-reduction-466312
Wow, I read through that entire original thread and found out some important new information. I love it when something is said in a slightly different way and then it hits home for me, thanks for posting this - it was very helpful to me!
Anhaga,
I agree with you. This website has gotten me through some very tough times, thank you all. And yes Eileen has been great, knowledgeable, patient, understanding, and strong enough to control the pain induced emotions of a group like this.
Charles92035
A fascinating old thread, especially in view of all the help you and Eileen have given me.
Interesting that you went from a pred dose of 15 to 9 mg in just 10 weeks. I'm on 13.5 mg after 20 weeks, now dropping at 0.5 mg a week!
I looked for an older thread, when five people met on this forum.
Result, 3 registered charities, support groups, coffee meet-ups, profile of both PMR & GCA raised by 100% and much more research.
This site is the best one in the world, as far as I am concerned.
Thank you to the two Tyneside Doctors who started it up and the people who work on this site for their integrity and help.
I, for one am grateful, big time.
I used to be mrsK...........
FAILURE ONE BIG ONE.
Meant to add, one thing we have not achieved is an 'EDIT BUTTON' on this site.
It really is a good thread isn't it!!!! Has a tremendous amount of info in a relatively small space.
I think the only important point which is missing is I still didn't know not to take pred and calcium together. That information probably arrived a month or so later. I've recently looked at the information sheets which came with my first pred prescription, and it does not mention the possibility of a pred/calcium interaction.
No, not PMR/pred free. Last year I got to 1.5, but a mistake by my doctor (finish up your tablets and see what happens) and me (I have enough tablets to taper by DSNS to zero so try it) led to a flare, relatively minor, which meant eventually going back to 7 for a few days, then quick drops down to 4, and since then dead slow again. I'm in the process of reducing from 3 to 2.5. I feel this incident probably set me back by a year. I may simply be someone who will need to take a very low dose (hopefully like 1.5) for quite a long time before remission really arrives.
I agree Anhaga, I do not know where I would be today with if I had not found the forum a year ago. I was in a wheelchair, had too increase my dosage from 7 mg to 30 mg to get any relief and was depressed. With the help of people on the forum especially EileenH I got moving again. Current dosage 9 tapering to 8, working as an ski instructor and feeling good.
Thanks to all of you on the forum. Thinking positive with a smile on my face. ☺️
Hi Anhaga. Because of the prednisone I have a bone scan every two years. 2 years ago my bones were good, in my last scan they were poor. I have been put on once a week Fosamas plus tablets to help build up my bone strength. I am at 2.5 / 2 mg DSNS method at the moment.
Wendy, I to get a bone scan every two years, will do for one this fall. I take calcium with vitamin D and magnesium twice a day, not at the same time. I try to stay active walking and now riding my bicycle. At a rest stop on yesterday ride we had a discussion as to whether riding would help with bone density. Normally bike riding will not, but whether we put enough stress on our bones on our climbs will help is the question. I will be interested in seeing the out come of my bone density scan. I try to stay active hoping that it will help. ☺️
As it's said that bouncing, jumping, heel drops, and otherwise gently jarring the skeleton helps to promote bone density, I imagine cycling over a bumpy trail would too. Now how about horse riding?