I am 70. Experiencing weakness arms, thighs, increasing fatigue over two years before finally being diagnosed in March 2017. Was on and off prednisone every two to three months, as GP kept saying it was not good to stay on. Each time it was stopped I was back in bed within a day or two. Finally saw a ruematologist and diagnosed in March. Started on 20mg Prednisone, and told to decrease every few weeks till 5mg. It is very difficult to decrease it without fatigue and pain returning. Have had to go back to 20 and am now decreasing by 1/4 mg. every four weeks. this week stated on 13 3/4mg. However I am experiencing pain in my shoulders and left arm, and increased fatigue. The pain I can deal with but the fatigue is really hard. I have always been quite active, plus my husband and I have been and still are raising our grandson since he was 4, now 13. My question has anyone stayed on 20 mg for a long time say months, I am reluctant to do this because of possible side effects. I cannot take Fosomax or the other med for prevention of loss of bone density because of side effects. I would just like to have a few months of feeling able to function at a near normal leval. I would really appreciate hearing from anyone who is on 20 for any length of time. Thanks
Hi carolann35477, I have about 10 years on you. I had a flare in April had to go to 30 mg to get relief and stayed at that dosage for about 6 weeks till I was PMR pain free. I then started to taper 2.5 mg every 2 weeks, walking daily trying to stay active. Always listen to my body, trying not to over do it and pain free. I am worried about my bones so I take supplements and walk, I am an ski instructor in the winter and yes we do fall! I sorry that you are having problems on your journey, try and get PMR pain free, then active a little at a time do not over do it, think positive and try to put a smile on your face for the rest of your journey. I have a smile on my face. 🙂
Hi CarolAnn. I am 67 and diagnosed 10 days ago. On 20 mg for 5 days then 5 mg thereafter. What a mistake! Huge pain so stepped up to 15 mg now. Haven't had pain free day yet. Up and down but optimistic it will come right. This forum really helps. I realise now that doctors just prescribe the recommended dosage but we all different and have to manage this ourselves. Good luck.
Hi Carol, what I have learned here is this. Pred relieves symptoms but the underlying inflammation giving rise to them takes a long time to sort itself out. In the meantime you try to get to a dosage which manages the symptoms through trial and error. It's important to do this because the fatigue is a response to the condition, pain and Pred! Rest is as important as walking or household tasks. It sounds as if you need to increase your dosage - perhaps to 15mg, stabilise for two or three weeks before trying slow reduction once again. It doesn't mean you'll never get there just slower than you would like. Pred patience is the mantra! Are you taking Adcal for vit A and calcium? People have been on higher dosages for long periods of time, I'm sure they'll respond. Pain is very lowering, especially when there's a child to look after - I know that feeling! I try to save energy pockets with rest before an active period with my two and a half year old grandson, finding new muscle aches when I play with him!
Hi Maria, my GP said 15mg - 25mg initially. I found 20mg did the trick, and kept it at that for five weeks. I am now tapering using the dead slow method as steroid withdrawal pain is like Polymyalgia. You can read about the method on the home page. It seems to work. Managing pain is the challenge, giving our systems a chance to sort themselves out then reducing the dosage to cope with side effects. It all takes time! You already know more than your GP - this Forum is on your side.
Hi carolann35477, I am tapering down from 30 mg to 17.5 pain free. I stabilized on 30 mg for about 6 weeks before starting to reduce my dosage. Everyone is different, but I would get pain free before reducing.
Try and have a positive attitude and reduce slowly. Good luck on your journey. Smiling 🙂
I really do wish that when a GP decides it is PMR the patient has (there is no point giving pred otherwise) they would at least look it up and then treat it properly. Getting someone into a yoyo pattern of pred dosage just makes things worse and in the long probably makes things harder for them.
The fatigue is a separate part of the illness though and the pred doesn't really help that except for the Duracell Energizer Bunny effect at high doses which balances out the fatigue of the autoimmune disorder. That has to be managed by pacing. It's hard and especially so for people who are used to being active but really it is the only way.
How pain-free were you at 20mg? Did you take it long enough for your symptoms to really be improved? Do you have raised ESR and CRP blood markers? If so - were they checked once you were on pred to see if they were falling and had reached normal levels?
It is also possible that your shoulder and arm pain is due to bursitis or myofascial pain syndrome. If so, local steroid injections and physiotherapy using manual fascial release techniques would help relieve that pain and then that might help you manage better on a lower dose of pred.
Hi Carol Ann. Diagnosed 4 months, my GP tried to get me down to 10mg from 30th within a month. He put me up & down like a yoyo & pain always returned.
Found this site & decided to do it the PMR Posse's way...25mg & feeling good now. I was good at 20mg for a month but I went away a couple of weekends & overdid it. So no extra curricular for me whilst I try to get back there from 25mg.
Hi Carol Ann. Diagnosed 4 months, my GP tried to get me down to 10mg from 30mg within a month. He put me up & down like a yoyo & pain always returned.
Found this site & decided to do it the PMR Posse's way...25mg & feeling good now. I was good at 20mg for a month but I went away a couple of weekends & overdid it. So no extra curricular for me whilst I try to get back there from 25mg.
Quick question, Eileen - what are 'normal levels' of ESR and CRP please? I had mine tested recently as have been going downhill for a couple of months and wanted to check my bloods. My CRP has been 12 for a while (in keeping with pain levels!) and my doc said they were 'normal' and to remain at my current dose of pred. I decided (and probably later than I should have done) to go up a couple of mg. Now at 13mg - probably need 15 to be honest and struggling daily. I don't know why we resist pred so much - but I was so hoping to be going down on the DSNS method by now, not increasing!! Sorry to hijack your thread, Carol Ann x thank you
ESR should be under 20, CRP depends on your lab and the units and whether it is "ordinary" or high sensitivity testing.
It isn't the tests taht are significant - it is the SYMPTOMS!!! In some people the ESR/CRP don't rise again wen they are taking pred - don't know why, just is so.
Thanks for your reply Eileen. I was wondering if the on off again routine by my GP had any negative effect. When I first started on Prednisone it was like a miracle, then off and within a few days back where i had started. It seemed that the more times I went back on the longer it took to feel better.
Up until yesterday the fatigue has been more disabling than the pain. However yesterday and today the pain in my arms, shoulders and neck has been very bad 8 !/2 out of 10. ON Monday I had gone from 14 alternating with 13 3/4 prednisone to 13 3/4 daily. Who would think that a 1/4 mg. daily decrease would cause such a difference. I feeel like I have been hit by a truck. It is very difficult to get off the couch up from lying down, and doing any housework is totaly out of the question. I ffelt much better on the 20 mg dose but am feeling that I cannot stay on that forever and have to work at decresing it despite the problems, but perhaps I should just go back to the higher dose so that I can have some of my life back. I do not mind having to have a rest in the afternoon if I can function inthe morning.
I do not know the numbers for the ESR and CRP. All I was told was that there was some elevation of the inflammatory markers. To be honest then and right now I am experiencing the brain fog thing and feel like I just do not care and cannot keep up with it all.
Looking back my first symptom was arm pain in my right upper arm. It was really bad at times, kept me awake, the Dr. really had no idea what it was and sent me for physio. They did acupuncture and it did help. The other main symptoms were extreme fatique and weakness in my thigh and arm muscles. walking is difficult. from Nov. 16 to March 2017 I spent most of my time sleeping and lying on the couch. In between I would be at the Dr. asking for Prednisone again and finely in Feb. after being seen by an endocrinologist who called to tell me that bloodwork she had ordered showed an elevation of an inflammatory marker and she would recommend that I see a reumatologist.
I do not see him again until the 29 of August.
I am going to speak with him about Actemra as I have been reading about it just recently. Seriously like everyone else I just want this to go away quickly. at 70 you just do not know how many good years you have left, and I would like to be able to be up and around a bit and enjoying them now if I can.
Thanks Michdonn, will try your advice about the smile on my face, but some days it is difficult. i find walking difficult, but I do have a three wheeled bike, and enjoy getting out on it.
You are right about having to perhaps manage the doseage yourself Maria. And the forum is helpful, just to know you are not alone. I have had health problems in the past but it was always surgery, ie new knees, and 8 weeks later all is well. I am not liking this as it is taking too long to feel better. Good luck to you as well, and hope you get pain relief soon.l
thanks Celia, I think I am going to do exactly that, go back to 15mg, hope that stabilizes the pain and then go from there. I am taking Calcium and a multivitamin daily. Enjoy your little grandson, they certainly are a blessing.
Hi, thanks for your response. My GP did the same to me, like a yoyo. That was because he really did not know what my problem was only that when I was on prednisone I felt so much better. At that time my bloodwork was okay. He did say that you can get a kind of feeling very well experience when on prednisone. I am going to increase my prednisone starting tomorrow as I am having a lot of pain at the moment. We like to get away in the summer we have a trailer in a campsite we go to, but honestly it is just to much work and difficulty at the this time.
Yes carolann34577, we are traveling a bumpy road, some days it is much more difficult to have a smile, but I think it does help. Hang in there and get the PMR pain under control then move on from there! Good luck. 🙂
I have been on 20 mg for six weeks now and am just starting to taper using a dead slow method which takes 16+ days to get to the recommended 10% reduction. I think rapid drop in pred is painful and the body has to have time to adjust. It may also be that I will need to maintain a higher dosage to keep me going. I don't want it to become a contest between me and tapering, and I am prepared to put up with the side effects etc if it gives me mobility and quality of life. I'm 70 too and time is precious. I also think that rest is important and some form of gentle activity. On a fatigued day going round the corner to a shop can become a challenge but I try just to break the rest cycle and it helps to make me feel part of the human race again! We are all in this together and that is a great comfort.
Thanks Celia, I think I was reducing the 20 mg far too soon but that's what the dr recommended. Have gone back onto 20 mg and will see how I go. Can't believe that just 3 weeks ago I was happily climbing a mountain, start d callenetics and generally in excellent Health. Amazing how ones life can change overnight. But life goes on and I wouldn't let this take over mine. You ladies so helpful as this is such a learning curve for me. Thank you
"When I first started on Prednisone it was like a miracle, then off and within a few days back where i had started. It seemed that the more times I went back on the longer it took to feel better."
Exactly - a lot of people find that. And you were displaying typical PMR responses: responds to moderate doses of pred, symptoms return in a similar time frame when you stop it.
What is more likely now is that you were only just holding things before you cut that 1/4mg - and now the inflammation simmering under the surface is enough to cause symptoms. Have you said how long you were on 20mg? At a guess, because of the way your GP has messed about, you didn't start now on a high enough dose to really clear out the inflammation and until you do that you can't reduce significantly.
It's like a dripping tap into a bucket - if the bucket is almost full it isn't much use taking out a cup-full of water a day to stop it overflowing if the tap is dripping 2 cups worth a day into it.
I really would counsel trying pred used properly by a rheumy FIRST. Actemra is sweeties either and just jumping in at the deep end may not be a good idea.