I beginning to think I am cured of PMR or am I dreaming. Diagnosed in December 2018
January I was taking 10 mg prednisone was feeling ok had some bad days. On February 12 saw a rheumatologist put me on 30 mg prednisone. My 2nd appointment everything good lowered my dosage to 20 mg (10 mg morning 10mg evening). I been exercising and now preparing for a 10 mile race and I feel fine on March 26 will taper down to 15 mg. Has anybody else experienced this feeling that I am cured and actually could stop prednisone
Thanks
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jensen0518
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It does suggest that you are on a dose that is controlling your symptoms. I am glad you feel so well. You always need to taper gently off steroids. A sudden stop is dangerous. You may still have the underlying disease, so pacing activities is part of self care. 15 mgs is a pretty hefty dose that would control the inflammation in a lot of patients. I would ask my Rheumatologist for an opinion on your state of health and the race.
Hello. It’s great you feel so well. However, your current dose is high of a potent anti inflammatory which can make one feel artificially energised and ready for anything, especially if pain free. I echo everything SJ says in view of the effects on the muscle and that suppression of your adrenal glands would make it dangerous to just stop. Sorry to rain on your parade, especially when you are feeling so great. If you were feeling like this on 2mg it might be different, but not 20mg.
Hi there I started my treatment at 15 mgs so it does seem that you are really only getting treatment you need. Two years on I am still on 2mgs and would be unable to reduce any further at present so please be careful
Perhaps you're feeling so well because you *are* on pred!
As a matter of interest, why did you go from 10mg in January to 30mg in February? It's a huge jump. If you had some discomfort, I could understand it being put up to 15mg or even 20mg, but 30mg seems high.
I should think the 30mg cleared out any inflammation and gave you a great start. And now 20mg is probably above your PMR requirements. I recall feeling wonderful at 20mg.
As you feel so good, in your position I might be tempted to drop to 17.5 now, then 15 at end of March. A 5mg drop is ‘doable’ at higher doses, but I couldn’t achieve it (had to do 17.5, 16, 15). Of course if you drop too low, you’ll soon be reminded that the PMR is still there.
I couldn’t manage a 10 mile walk, let alone a run! And my worry is that you’re damaging your muscles. PMR bodies are notoriously bad at letting you know you’ve done too much til AFTER the event, and with the high pred dose camouflaging things, please be careful.
Given that the PMR we talk about here has a median duration of pred management of just under 6 years and less than 1 in 5 are off pred in under a year - somehow I think what you are experiencing is being on a dose that is managing the inflammation very safely. The duration varies from months to many years - but the months end is not common. As long as you are on enough pred you may well feel "cured" - you will be reducing to find the lowest dose that manages the symptoms and that will, one hopes, be well under your current dose. It may even be only 1 or 2mg - but it could equally be 9 or 10mg. But when you get below that dose - PMR will come back if the underlying autoimmune cause is still active. And the only way to know for sure is when you get there.
And no - after 3 months of pred you MUST NOT stop suddenly. You could probably stop faster than if you had been on pred for 3 years but I wouldn't counsel it. Pred often gives you (mental) wings - it may not give you the legs to run a 10km race. Some experts believe that over-exercise may cause a severe flare or even be the final trigger to cause PMR in the first place. Be careful or you may have a nasty surprise.
Others have said it really - you have been on high doses for PMR - so you should feel good!
Once you get to 15mg (which is very often the starting point for PMR) you may feel a little different. So just be aware this may not be the end of the road for you! I wish it were, but I have my doubts. But please, I’d be delighted if you prove me wrong.
Carry on with exercise by all means, but if it is PMR then your muscles will be less resilient than before, and it’s all to easy over reach yourself.
To echo what has been written before, from the perspective of one who hasn't taken a pred dose for 8 years now - be very careful. What pred is doing is kicking the symptoms into touch, while the underlying illness is still simmering away below. Like you I was feeling much better physically about three to four months in, and was able to start gentle running again, but once I got down to around 7mg I found it very hard to get any lower. I think I was on around 7mg for about a year, and four years later I felt I was cured when, off steroids completely, I walked up a 1000ft mountainside and cried with joy. Touch wood, the PMR hasn't come back. So first come to terms with it probably being a bit of a long journey, but travel optimistically. Good luck!
I have similarities with you, diagnosed with PMR late October 2018 and started on30 mg/day and tapered down to 7 end of last month, that’s when mild PMR symptoms reappeared so went back up to 10 for a while and things have cleared up so just started a slower taper. Seems when you get close to 7mg/day you need to slow down as advised by most on this forum. I have had no muscle or fatigue issues to date, still doing weights and gym work and playing golf twice a week but fingers crossed things won’t change when I get under 7 again. One thing is for sure even though I feel great I know PMR is still lurking around. But as they say everyone is different and you may not hit any obstacles.
My experience is identical to yours, except I went back up to just 7.5 mg where I remain seven months later. In the main, PMR and pred have been symptom-less. Since October 2018, I have engaged in all manner of vigorous exercise without a hitch.
Incidentally, I understand from my son—a middle distance runner—that pred is banned as a performance enhancing drug!
Sounds like you're enjoying your Pred 'honeymoon' ! I was diagnosed March last year and started on 20mg Pred. After I got rid of the residual inflammation I felt amazing and got back to my weekly Zumba, Pilates, body conditioning and body balance classes without any repercussions. I decreased in 2.5mg per month increments until 10mg . Then I got some aches & pains back after an active Alpine holiday so went back up to 12mg while I tried to figure out whether it was a flare starting or just old injury problems unmasked. For me, my test is if I can get a reduction in pain by stretching or exercise or co-codamol then it's not my PMR , a dull ache inside my shoulders may be PMR .Currently at 6mg and still doing all my classes and have completed my 'Couch to 5K'. ( I have no desire to get to 10 miles !). I know what you mean about wondering if the PMR has gone but I think that's the wonder of pred. I am taking the slow tapering advice from the forum to try and avoid a flare. I remember with horror not being able to turnover in bed and being overtaken while walking by an 80 year old on crutches and do not want to go back there. Sorry this is a bit of a ramble but I hope sharing my experience of being active with PMR/Pred might be helpful. Short version - the Pred is doing its job so don't rush too much to get off it, listen to your body and good luck !
You got lots of comments on pred and PMR. Unfortunately you are not cured because pred only manages symptoms and does not impact underlying immune system problem.
I want to warn you to be aware that pred numbs pain and it is easy to overdo your exercise. You are one of the few lucky ones that was in good shape before getting PMR( my guess) and is able to get back to training relatively soon. In spite of how you feel, be gentle to your body. It is very easy to injure yourself; I did it and recovery is very long because of PMR.
Hi Jenson. Sorry to burst your euphoria bubble, but what you are experiencing is the miracle of pred! Wonderful isn't it? I remember thinking I was cured of PMR after the first dose of steroids which was 15mgs. (30mgs is a high starting dose for PMR so it will be giving you a very false sense of security). I also thought others on this forum were all soooooo pessimistic! Oh how the tables have turned
Enjoy the Euphoria whilst it lasts, however DO NOT stop taking the steroids. Any tapering should be done under the guidance of a qualified physician.
Also a word of caution - try not to overdo the activities since 'pacing' is all with this disease. We all live and learn.
Best wishes on your PMR journey. It is likely to be a bit of a roller coaster and this forum will support you all the way.
That is why you reduce slowly, in small steps, and take close note of what your body says. As long as you are taking enough pred you won't go back to the severe pain and stiffness - and that is what you are looking for: the lowest dose that gives the same result as the starting dose did. You reduce until symptoms start to appear and then go back to the previous dose that worked well.
Hmmm, beware that “great” feeling. I was running 10ks just before diagnosis. On 20 and down 15mgs Pred, (with the help of MTX at 17.5), I had no problems and was back running . Then the wheezing started and the fatigue. Be very careful. I’m on 5 now and some days I can hardly walk. Whatever you are, you’re not cured. Take it easy on the tapering and you will be fine!
You've had lots of advice and please don't stop the pred instantly, that is dangerous. Keep to the gradual reduction plan and don't go too mad with activities because you feel well. Pace yourself throughout as it could bite you on the bum!
It is good if you are getting through it so well, lots of us are envious.
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