Prednisone reduction: retrospective

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.

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!

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.  

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!

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.

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?

I know pred may influence bones down to minute doses, but the effect will be really slight at 2 mg.  I improved my bone density when my dose was over 5 mg for the year between the two scans.  What is your t-score now?  How long have you been taking pred, and what else are you doing beside the Fosamax to improve your bone health?  

If you google healthunlocked my osteoporosis journey you will find an account of what I did to improve my bone density.  I will not be eligible for a third scan until late next year, and then only if "they" agree to let me have it.  They tried to cancel my second one in 2016.

Anhaga, stopped jarring exercises number of years ago they started to bother my knees. It will be interesting to see the results of the bone density scan. Hopefully the walking, skiing and cycling will have had a positive effect. ☺️

I can't do jarring exercise because of quite a lot of osteoarthritis in my spine.  I wear a weighted vest sometimes, gradually over time increasing the weight, and I think this is useful to maintain and improve vertebrae density.

That sounds like a good idea Anhaga. Do you think it works? Same idea as riding a bike to stress the bones. Working hard climbing the hills, put stress on the whole body. This fall's scan should provide some answers. Think positive. ??

I suppose the weighted vest must help as my vertebrae scores improved, although I do so much else it's hard to know what has the most effect.

What about getting a motorbike and off roading?!!

Anhaga, I would think that just walking with the vest puts stress on your bones and help with the bone density. Your next scan may give you a partial answer. Thinking positive,☺️

Being cuddly (aka fat) is protective against osteoporosis! The weighted vest is for the slender of this world to exert more stress on the long bones when walking.

I won't get another scan until late 2019 at earliest but the difference between first and second was very encouraging and they don't recommend the meds any more - the ones I refused to take.  Weight bearing exercise is the best for osteoporosis.

Exactly, the reason I bought the vest, to help replace some of my lost weight!

That has to be one of the least appealing activities, other than crazy daredevil things, I can think of.  I completely disapprove of activities which disturb the shrinking habitat of other species.  

My sister and I were talking about this yesterday as several of our friends get diagnosed with osteopenia and osteoporosis. My sister decided that chocolates and wine had paid off! 

You could always go off road on a powerful motor bike!!!

As I said in reply to your previous mention of this, I disapprove of such activities.. Sorry if i have no sense of humour about this but I strongly dislike motorbikes on ordinary roads, let alone destroying what now passes for wilderness.