Could not dress get in and out of the bath or on or off the loo with high C-RP Test.
24th Dec 2018 20mg of prednisolone 12 hours later 100% reduction of above issues. 20mg for the rest of the first week next two weeks on 10mgs then
Self tapered from then for 8 days one day at a time with 10, 9.5, 9,9, 8.5, 8 ,8 ,8 ,8.
Male 6ft 2inches 100kg hoping to drop fast while my adrenal gland stands a chance of still starting up again at maybe at 8 or 7.5mg ?
I am hoping my own adrenal gland can help by making its own steroids. What do you think ? The idea is to get a few mgs from my adrenal gland going before it gives out so I dont have to take so much Pred
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survivalist
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It doesn't work that way, unfortunately. You are taking pred to deal with inflammation which has caused pain. You will probably for a few months need more than your body makes naturally. However if you can taper to 8 mg without return of pain you are ahead of the game, I was able to taper to 7 mg in about six or seven months and was down to 3 mg by the end of the first year But mostly people said I was very fast! I am still on low dose pred after more than three years. Yes, it took time for adrenal glands to get up to speed, but a small price to pay for relief of pain and disability of PMR.
"I am hoping my own adrenal gland can help by making its own steroids."
That isn't the problem in PMR, although there have been suggestions of poor adrenal function in PMR in the past it hasn't been found to be generally associated with it. The pred is to reduce the inflammation - not to replace cortisol. Your adrenal glands aren't producing cortisol simply because they know there is more than enough corticosteroid present in the body and the function almost always returns as the dose is reduced. It isn't a case of needing more - what is present is doing two things at the same time. It is a bit like your central heating boiler and the wood burning stove. While the room with the thermostat is warm enough because the wood burning stove is on, the thermostat tells the central heating boiler that there is enough warmth and it does nothing. As the wood burner dies down the temperature in the roo falls and the boiler eventually starts up again.
You may be lucky - when I first started on pred, I reduced from 15 to 10 to 5mg without a problem after 2 weeks at each dose. But the symptoms were back within 6 hours of missing the first 5mg. I never again got reliably under 10mg for the best part of 4 years. If you let the inflammation flare up you may find it difficult to get it under control again - many people have. Don't push your luck - because PMR will always turn round and bite you on the bum.
Obviously you are very lucky to be able to reduce Prednisone very quickly, as it usually takes a month to two weeks for each stage of reducing.
Now you are still tapering your Prednisone I think our experts here on site would advise you to take it much much slower in order to avoid a severe flare up.
Thanks I'm already thinking I have gone too far way too soon but I suppose if I just keep taking 8mgs and it stays OK for a while I might get away with it
The reason you were in pain was because your adrenal gland can't make enough cortisol to mop up the inflammation from the PMR.
I'm no medic, but I doubt your taper is going to work. The original dose was enough to make you feel better, but pred does absolutely nothing for the underlying disease. All it does is clean up and supress the inflammation. While you're still feeling alright, I think you're going to start feeling pretty poorly again in the next couple of days.
PMR is not an acute condition. It is a chronic condition. If it is PMR, it can last as long as 6 years. Rushing your taper is only going to result in being more uncomfortable for longer, and in ultimately taking more pred.
If it's not PMR, this might relieve your pain symptoms sufficiently for whatever it is to go away.
But if it is PMR, this is really, really, unlikely to work.
Wow! I've got down to 13mg in 5 weeks (from 15) and even this feels TOO fast. I am struggling!
See how you feel over the next couple of days but if you have a good read through the posts here, the people who seem the happiest are the 'slow and steady wins the race' types. Haha. Good luck!
Thanks I feel I have definitely done the wrong thing to go down so quick.
To be fair is was partly the GP's fault he told me to go 20mg for a week then 10mgs and then said taper 1mg every two weeks. I then got all keen and went 2mgs in one weeks.
I think I will stay on 8mgs and pray nothing bad happens.
Yeah, I had one of those guys too. Had me reduce from 20 to 15 in one fell swoop. I wound up with a flare that practically paralyzed me for 5 months. After that, I took control, went back up to 20mg, and reduced by no more than .5mg every couple of weeks to a month. It took 18 months, but I'm currently at 6.5mg and had no flares after that first one. If I'm facing a particularly long or stressful day, if there's a big bad storm moving in, if I catch a bug, I go up a half or full mg for a couple of days, then go back where I started. Seems to be working so far. We'll see how the next few steps go. Lower is harder.
I identify with this. I'm newly diagnosed and tapered too quickly.
Dropped pred from 20 to 12.5 in four weeks. Pain back. GP said go back to 20mg. Rheumatologist at first appointment 4 days later said reduce to 15 immediately, then 10 five days later, then 7.5.
Gave me an intramuscular injection for what she said was sciatic pain.
Injection had no effect.
Reduced to 12.5 (not 10 as advised). Had one good day.
Pain now not controlled. Am going to have to go up again, but to where?
I have more faith in advice from here than anywhere else.
The standard advice here that I've read seems to run that you go back up to where you last felt comfortable, sit there a while to clear out the accumulated inflammation, then start again very slowly, never reducing by more than 10%. I, however, took my own path and descended by .5mg or 1mg every couple of weeks. Down to 7mg now after 128 months, with no flares. It may not owrk for others, but it worked for me.
I expect the next stage to be more difficult as the .5mg drops are a higher percentage of the dose now. I might be trying one of the DSNS plans that change doses up and down every few days, blending along he course of 4 weeks to get to the new dose. We'll see.
In fairness we assume - in the beginning - that they know what they are doing. Which in a lot of cases is not the way it is! Take care with it - it does seem VERY quick.
I am sure the GP was not familiar with PMR. He was talking about me just going from 10mg's to 5mgs instead of 1 mg at a time every two weeks.
What happened was he was checking on the computer for what to do and changed his mind about dropping from 10mg to 5 mg because I said I couldn't do that in one go after only a couple of weeks on 10mg.
He then decided on the 1mg every two weeks because he read it on screen somewhere.
I was the one that booked myself in at the local GP practice without taking to a doctor for a C-RP blood test after a couple of weeks on 10mg. The Nurse just took a blood sample and then asked what they were doing with it. So I just said its for C Reactive Protein ( I had read that on the internet and I sounded confident. How could I know that if a doctor hadn't asked for it ? )
I've been sort of driving the show from the word go but as I had no idea what I was driving I think I have been ultra lucky I haven't got myself into a right mess.
I'm now five days into taking 8mg and so far its seems like I have had beginner luck in getting away with it but I'm not about to change anything from now on in for a long time.
Yesterday I got this book from amazon by Kate Gilbert and I read it all the same day so I can teach the GP anything they need to know LOL and my daughter shes a consultant but not in this field she great on pain killers though.
Yes - seems most of us have had to be the "driver" in this - not the medics. I was sent to a Rheumatologist who made a holy mess of it - so you can't win. Some of us end up having to "talk nice" to our GPs so we get the Pred - while trying to do a slow taper!!! There are some lucky people here who have had good GP's or Rheumys. Just take care - hope you have a smooth taper going forward!
I think what a lot of people on this site want/need is a GP who has had or is still suffering from PMR. That might be very helpful not to mention interesting .....
A few years ago there was a retired lady GP on the forum (very briefly) who commented that she had a very different view of managing PMR now she had it herself, reflected on the number of patients she had tried to rush off pred and now realised that 1 or 2mg here or there really was immaterial.
OTOH, another who was obviously feeling threatened, went ballistic at the forum suggesting alternative ways of helping our problems, in particular Bowen therapy as it happened - saying we might as well dance naked under the moon. If someone said that had helped them - I'd seriously try it!!!
Doing things like that caused my PMR in the first place.
Seriously though they do say cold water swimming it not bad for you. My mother now nearly 88 with rheumatism used to do this a lot and she felt great for weeks s afterwards.
Germans do all sorts of cold things - including alternating playing warm and cold water over their arms and legs in the shower. I have tried it - the PMR muscles just objected violently!!
You have already been given good advice, so I won’t repeat, but you might like to read this - it will give you a better understanding of your illness -
Welcome to the forum. These folks are a wealth of knowledge and have helped me through my first 8 months of diagnosed PMR. We understand what it is like to live with the symptoms, the medication (pred), etc, so we will "get it" better than most.
You are brand new to this condition, and were in part following your GP's instruction. You will learn, with time, to listen to your body and symptoms that will guide you.
I started on 20mg but was so afraid of pred I tapered down to 15 after three weeks (despite my GP wanting me to stay at 20 at least a month as I had undiagnosed symptoms for 5.5 months prior). Next I followed my Rheumy's "textbook taper" dropped to 12.5 and flared. Back up to 15 for 5 weeks. From there I dropped 15, 13.75, 12.5, 11.25, 10. Now I drop by .5 and am tapering down to 9. My journey was 8 months in the making.
Yes, you've tapered quickly, and I hope there isn't repercussions. I'd stay at 8mg and watch for emerging symptoms. If you manage ok, only drop by .5 and settle at each new dose for a few weeks. I believe a test can be done at 5mg to see how adrenal system responds.
Good luck moving forward and keep us updated. Feel free to post questions at any time.
Thanks I'm going to need that luck I'm on a wing and a prayer at 8mgs I can see that now. I feel fine at the moment bit stiff first thing and unfortunately I have a bit Capel tunnel as part of the PMR but it goes away by lunch time. I think to begin with on 8mgs I was right on the edge of a flare but its not happened so far, its getting a little bit better each day instead.
And I dug up a red current bush and replanted it this morning how about that.
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Good luck!
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