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Anhaga Anhaga

Prednisone reduction: retrospective

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.  ❤

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  • EileenH Anhaga

    Maybe you should put the link in - would be interestingto see what was discussed wink

    • lodgerUK NE EileenH

      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...........

  • frances80868 Anhaga

    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.

  • margaret89358 Anhaga

    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, 

     

    • diana21296 margaret89358

      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!

    • Anhaga margaret89358

      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.  

  • alley2 Anhaga

    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.

     

  • Anhaga

    The original thread:

    https://patient.info/forums/discuss/prednisone-reduction-466312

    • Anhaga EileenH

      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.

    • Joydeck Anhaga

      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!

    • Michdonn wendy64238

      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. ☺️

    • Anhaga Michdonn

      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?

    • wendy64238 Anhaga

      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. 

    • Anhaga wendy64238

      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?  

    • Anhaga wendy64238

      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.

    • Michdonn Anhaga

      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. ☺️

    • Michdonn Anhaga

      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. ☺️

    • Michdonn Anhaga

      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,☺️

    • Anhaga Michdonn

      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.

    • Anhaga ptolemy

      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.  

    • ptolemy EileenH

      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! 

    • Anhaga ptolemy

      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. 

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