I am trying to taper the pred. as the doctor has suggested. My problem is that I am not anywhere near pain free. I have a high pain tolerance and a tendency to think I can cure almost anything with mind over matter, but man I hurt--My wrists and lower legs and ankles are very painful. I feel like I'm not even walking on my own feet anymore--but am flinging planks in front of me and trying to shatter my ankles and the bottom of my feet. I admitted defeat today and upped the pred by 5mg. and will see if a week of that helps. I think I have been reducing too fast at about one half to one mg every three to four weeks.
So please tell me--should I be feeling pain or only aching mildly?
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Looking back at your previous posts, and to be brutally frank, I would say you are trying to run before you can walk.
You have only been diagnosed for just over a year - so your PMR is still in it’s infancy despite what some may tell you - and you seem to have had problems most of that time.
That tells me you have either never taken enough medication at any one time to control things, or YOU have been trying to do too much.
Your doctor may suggest whatever plan he likes, but, as many of us have found out, it’s the disease that dictates how that works out.
The general idea on diagnosis is to take a high amount of medication to get the built up inflammation under control - preferably for about a month - that should give you at least 70% relief hopefully nearer 100%. Then, you reduce SLOWLY - again monthly- to find the lowest dose that gives you the same level of relief.
If you do not have that relief, you do not reduce!
You must remember the steroids are only addressing the inflammation caused by the PMR, it does NOTHING for the underlying illness. That’s still there, chugging along creating inflammation on a daily basis - and if you aren’t taking a high enough dose of Pred allowing that inflammation to build up again. Hence a return of your symptoms.
Hope your increase works, if it does - stay on it for at least a month until you are sure it is working. Then, and only then consider tapering again- maybe only 0.5mg a time and using a slow taper like this -
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Hello. Do you think this is your Achilles problem or the PMR? It will be interesting to see if an extra 5mg will help. Remember PMR pain (as opposed to withdrawal) equals inflammation so toughing it out could be counterproductive.
It might be helpful to change your head a bit so to speak. Your language, like beating, setback, stupid disease and girding yourself with a high pain tolerance, is like fighting a dragon. Remember this is your body crying out as its confused immune system attacks it. It might be that if you used your willpower and resolve to give yourself care and healing it might be an easier ride. It is mind over matter in many ways but not I think in a way that uses a mental stick.
What pain relief did you achieve on the starting dose? How high was it and how long were you on it?
If you have PMR you should start at 15-20mg and remain on it for at least a month or until your symptoms and blood markers are stable and you feel as well as possible. Then you start to reduce slowly - and that doesn't mean every couple of weeks though what you mention should be OK.
The level of pain and other symptoms that are left at the beginning on the highest dose are your guide - you should never feel worse at the end of a taper than you did at the beginning. If you do - you go back to the previous dose.
DL and Snazzy have said everything! If you have that level of pain - why haven't you been back to your doctor? Pain is a sign that there is something wrong and your poor body is screaming at you - you are ignoring it. No wonder it is getting worse.
Mind over matter doesn't reduce inflammation due to an illness - that's why you get pred. This is worth considering:
I agree with what's been said by others and you haven't found the right level that suits you. The dsns method might make you feel impatient but if you follow it closely and listen to your body you will get there quicker and without the yoyoing. Everyone is different and what works for one doesn't another, you'll get to know what's right for you. PMR lasts for a minimum of 2-3 years and isn't like any other where you can work your way through it. If you don't find that level you risk getting GCA as well. Once you've accepted you are ill you will be in a better position to pace yourself in your everyday life - there is no reason why you can't do the same but at a much slower pace. Best wishes.
I tend to feel a bit sore and stiff the first couple of days at a new dose. This resolves itself within 5 days max. If it doesn’t, or pain emerges after the 1st 5 days, in my experience it’s been a flare. Sometimes it’s hard to distinguish between pred withdrawal, a flare, or overdoing it re physical activity (DOMS).
Sounds like you are “suffering through” your symptoms rather than stopping your taper. As mentioned by you and others, you may need to increase your dose, mop up the excess inflammation and start all over again with a slower tapering schedule. Of note, my former rheumy textbook taper caused me to flare and go back up to 15mg for 6 weeks. Best to listen to your body....symptoms are the guiding factor.
Also try and accept your condition instead of trying to “tough it out”. PMR will win every time. Hope you get some relief soon!!
my fellow Canadian---you are right. I had myself convinced that the medics were wrong and I did not really have PMR. Well, I guess I'm wrong and Reality Is Ridiculous!
Wwhen I arrived here I fouind it hard to accept the realities of PMR, time tought me I was wrong and accepted this new life. The simple taper worked very well for me until I got to about 7mg, then I moved over the a different taper and on my 3rd attempt seem to be stable at 5mg.
Take your time and love yourself, chat to us and enjoy the help and fun stories on here.
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