I have had PMR for a year - or at least that was when it was diagnosed. Looking back I may have had it for a while before. Near the beginning there was suspicion of GCA developing so was on a huge Pred dose for a month or so. Finally tapered to 10mg and on that for 6 months. Have now slowly tapered to 9 then over last 2 weeks tried 8. I have been having a lot of discomfort in knees and particularly left hip. General stiffness and aching which comes at night too so that its uncomfortable to lie on that side. On the tapering side one GP in the practice seems to think 'tough it out' to get your body used to the reduction. What do people think about that?
Also having a stressful time with an elderly (96yr old) mother in hospital and then my catching a cold and a chest infection. Going from being an very active 71 year old to the present rather crook 73 year old has been a difficult transition. Am I being too impatient? Probably. I always have a very positive ' things will get better' approach to life but equally know there are plenty of people far worse than me. I really appreciate all the posts I read, and I do not write often. Thank you everyone. This forum is very helpful.
Do you think I need to put up my pred or seek any more doctor's advice?
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Stargiver
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See this link which explains the difference between steroid withdrawal (when you may be able to "tough it out") for a few days and a flare, when you definitely cannot!
Maybe nip it in the bud quickly and it will settle - so adjust the example to your situation - and down to 9mg not 8mg.
Stress will not help you illness - whether from worrying about your mother or an inconsiderate GP...and neither will the winter weather.
Plus at a year or so in, your PMR has some way to go...
When at 9mg would suggest you stay there for a few weeks then try reducing by 0.5mg a time, not 1mg (plain white tablets are easily cut with a pill cutter).
From then on a slower taper might need to be introduced because you will be entering into the realms of adrenals needing to start working ago.
As far as I am concerned ‘toughing it out’ is fatal. If the pain has not gone within a week, when it could be steroid withdrawal, you have dropped too far. As DorsetLady says I also think that under around 10mg 0.5mg drop each time is preferable. Particularly as you are coming up to the point where your adrenal glands need to wake up.
Don’t be fooled by the apparent short hop to zero after being in the teens. This is where you really have to slow down both in dose a possibly activity too for the reasons stated by others. At this stage I was caring for my unpleasant father-in-law so I know how that can take it out of you. I got general aches and pains with withdrawal for a few days but not such that it was waking me up and in specific areas. Also, bear in mind that after a year of Pred your muscles will be less tolerant of being over used. I found they hated repetitive movements and anything that needed a short sharp heave ho.
You are never reducing relentlessly to zero - you are tapering or titrating the dose to find the lowest effective dose for YOU and YOUR disease at any given time. If you go below that dose that gives the same result as the starting dose did, there will be some inflammation left over each day and over time it will build up - as a dripping tap will fill a bucket and eventually overflow - until you have symptoms again. Try to tough it out and you will end up back where you started and needing to start again.
Pred cured nothing - the high dose was a spring clean and now you are finding the dose to do the daily dusting. PMR is the name for the symptoms caused by an underlying chronic autoimmune disorder that causes inflammation and that causes the symptoms. Doctors will try to tell you it lasts 2 years - they don't understand the nature of the disease. It comes when it wants and it will go when it wants if you are lucky - nothing you can do will change that and until it does, you need some pred. In most cases it does get lower over time but you need what you need at any given time.
And stress does increase the need for pred - both because it can make the PMR flare and because of dealing with the stress and poor adrenal function.
PMRpro, I am one of those that are experiencing some of the bad side effects from prednisone: frequent urination, insomnia, anxiety, and worst of all depression with the doctor also having me on anti depressants with only some degree of success. I was diagnosed in April and put on 20 Mgs of prednisone , after 5 weeks the Rheumatologist started me on a 2.5 mg wean every 20 days, all the while suffering from shoulder, groin, and wrist flares that would cause my hands to puff like balloons. I finally got down to 12.5 mgs and the flare was so bad I demanded to go back up to my initial 20 mg dose, which worked almost immediately.
Now here's where it gets strange. Prior to the increase and after a number of months of weaning, I really could not figure out what all the fuss was about as I had experienced no side effects...none! But after the major increase in Aug back to 20 mgs not long after the side effects hit me hard: insomnia, anxiety, and depression, on top of the I would get these strange dark feelings that are hard to describe. I am currently down to 10.5 mgs and still side effects although to a bit lesser extent. So you see I am quite interested in weaning as fast as possible. I recently went from 11.5 mgs to 11 for a week, then from 11 down to 10.5 for a week with very little problems. 10 days later I tried to go down to 10 mgs and three days after that I had a major shoulder flare and went back up to 10.5 which helped a hundred fold. I've been at 10.5 mgs now for five days and are only getting some very minor shoulder pain ( I would call it minor discomfort ) and often find I am prone to " cracking " my neck, ( I think you mentioned that in a prior post )which is not really bothersome at all. I know it's a lot to ask, but how would you advise me going forward?
For me my mental health depends on getting off prednisone as fast as possible, but that being said a major flare for any length of time won't due either. I am truly between a rock and a hard place, and I now think that if my Rheumatologist initially would have paid more heed to my symptoms and not just stuck to a weaning schedule I may have been better off instead of going down over 3 months from 20 mgs to 12 mgs. Keep in mind that I was suffering no side effects during this rapid weaning ( except the pain, swelling, etc from poorly treated PMR )until the major flare had me going back to 20. I wonder if this contributed to my body all of a sudden not tolerating the prednisone as well as before. Any thoughts on this?
I really don't I'm afraid - though I think you are right that the rheumy caused a lot of your problems. There are 3 versions of corticosteroid used in PMR: prednisone, prednisolone and methyl prednisolone. Possibly another version might suit you better.
Bear in mind that reducing too quickly or with too big steps can cause withdrawal symptoms that can be almost identical to those of the disorder for which you are taking the steroid. There have been people on the forum who were put on methotrexate or hydroxychloroquine because of intolerable pred effects and they have done well without pred - always worth a try,
Otherwise it is Hobson's choice: pred to control symptoms or no pred and live with PMR.
Thanks everyone for your advice and support. I feel lucky that I am not getting too bad effects of the Pred - a bit of weight gain, a bit of insomnia, but not the anxiety and depression that some people clearly do. I have upped my daily dose a bit temporarily to 9.5 and will take it much slower to reduce and play the long game, especially with cold weather and stressful family circumstances.
Thanks again, all these comments are valued. Happy Christmas from Stargiver.
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