Hi Eileen if you are around....I have had PMR for 17 months and I have just dropped successfully to 10mg and will stay there for 5 weeks which suits my calender. I drop very slowly at half mg every month now as can't do it any differently without side effects.
My query is, having reached the magic 10mg, do I have to stay there for longer than 5 weeks or can I try dropping to 9.5mg and if successful try to slowly reduce to 7.5 at the same rate and then stay there for a bit. I am aware that it can be difficult dropping from 7.5 to 5mg because of the adrenal glands. I do not want to do anything in a hurry as I don't want a flare and have to go back up. Had one of those when my rheumie dropped me down too fast at the beginning of my journey and I don't want a repeat. I will definitely be doing the DSNS method once I reach 5mg if I am lucky enough to reach that, which won't be till 2018 in any event.
Thank you very much for your help. Diana
Not presuming to answer for Eileen but I don't think there is anything especially magic about 10mgs. It's more a matter of how you feel at any particular level.
I reduced more or less like you at 0.5 a month but didn't reach sticking point until 5 when symptoms bagan to creep back and was advised to stay on 5 for three months. After that I went back cautiously to 0.5 a month reductions and did, finally, get to zero. That was more than three and a half years ago. So far, so good.
Good luck and best wishes.
I started at 15mg August then down to 10 December dropping now by 1mg per month and now at 6mg a day Anke 5 in the morning and 1at bedtime splitting sure helps with morning stiffness hope to go down to 5mg in July have had no flare ups so far fingers are crossed also have eliminated sugar from my diet which makes a difference also .
How fantastic and so inspiring. Thank you. How long did it take you to get to zero from the beginning? You must be enjoying life pred free now you lucky lady! I know someone of 85 who is really active in every respect who said she had GCA when she was 50. She made a complete recovery and has never looked back. Also met a chap I know vaguely who said he has been on 5mg for years. He has had PMR for 20 years overall. Lives a normal life and walks 2 miles a day. Not bad for 82! Said he couldn't reduce but he wouldn't have known about the DSNS method or joining a forum. I also know 4 men who got to zero in 2 years. Easier for men than women it seems. All the best.
You are so lucky to be able to drop 1mg a month. I cannot do this as feel rotten for a couple of days dropping by just a half! Then I get back to feeling ok again. No pain, just feel very tired and generally unwell. The body kicks against the drop. Yes, I have split my dose too since joining the forum and take 2mg afer supper and 8mg at 4am after ramekin of natural yoghurt and this works really well for me. I have also eaten low carbs and low sugar to avoid weight gain. I looked up Steroid Diet when I was diagnosed. Every little tip helps.
Diana
send an email to pmr&gcauk northeast support (type that in you search engine) subject heading Reduction Plans and Eileen's plan will be sent to you free of charge.
Why not start withthe DSNS method now? Some people use it from the start, even at 15mg, if they find dropping hard. There is nothing magic about 10mg or any other dose - perhaps it just feels that way. The adrenal adjustment may start as soon as 10mg for some people as we all absorb different amounts, from 50% to 90% of the dose, and if you are a 50% person your adrenal glands will have to contribute a bit to the effect at 10mg.
I don't think I live anything other than a normal life - providing I'm on the right dose. It is a different matter if I try to go too low! As far as I'm concerned: no compromise!!
I assume you know my plan is always to be found on here too? It is in the replies to this thread with all the reading matter in:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and also in all its glory alone here:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
I first had PMR when I was sixty- seven. It went into remission after three years but returned when I was seventy-six. It took over five years to get to zero the second time partly because I was told not to discontinue Pred. completely until recovered from hip replacement.
Although I do have OA and some discomfort in hands and feet, it is not at all the same as PMR and I'm able to live a normal life, including doing all house work and growing own veg. Have just returned from local market shopping but I do allow myself a wheelie basket!