How do I know if I'm taking enough prednisone

Hi--I'm new to this web site and am so glad I found out about it! I was diagnosed with PMR in December 2016. Started on 20 mg of prednisone. After I got down to 10 mg, my doctor prescribed some 5 mg pills and some 1 mg pills. I'm supposed to slowly lower my dosage as I feel better.

I was feeling really quite good on 10 mg, and my doctor said he didn't want me "feeling too good." So I went down to 9 mg for a few weeks, then 8 mg for a few weeks, and now I'm trying 7 mg. My doctor leaves my dosage up to me, but I'm not sure how to do this and my doctor isn't that helpful. Right now on 7 mg, I feel pretty good most of the time, but I'm stiffer after sitting down and also my legs feel quite stiff when I walk up hills. Other than that, it's not bad. I'd love to hear about anyone's experiences or advice in how to taper off prednisone. Thank you!

21 Replies

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  • Hi there. Congratulations on doing so well. 7mg is reducing it very nicely. The only way to find out what the right dose of prednisolone for you is to try reducing your dose by 1mg every 4 weeks. Getting down to 5 mg would be considered a low dose. Below 5 I have had to reduce by half a mg a month. You seem to be fine on your current dose. If your dose isn't the right one for you your painful symptoms will return. There are members on here who are very very knowledgeable and very very helpful and I'm sure they will help with how much to increase by should your symptoms return. Nice to see you posting.

    Best washes from Liz.

  • This is a wonderful web site! Much more helpful than my doctor. I think I've been reducing the pred too fast and will try going slower. Thank you!

  • Good question. You have made great progress. I'm still at 17. Started at 15 in Dec. 2016 bumped up to 20 because my markers weren't responding fast enough, feeling good at the time. Then down 1mg per week to 14 but my markers went up and was put back to 20 though I was feeling fine. Down to 17, 1 mg per week, where I decided on my own to stay while trying to recover from a case of bronchitis and a cold and a big family gathering that included me hosting a big dinner. I actually bumped myself up to 20 the night of the dinner...was afraid of a repeat performance of Thanksgiving. (I came down with PMR after hosting Thanksgiving.) Just had new blood tests and despite the stress of the last month my markers have held steady. So even though I'm feeling more sore and fatigue after the big weekend, my doctor wants me down to 15 by next week. I find this all quite mystifying.

  • You are one sweet selfless person. Hosting others while suffering yourself and on medications. Keep going! Get well soon :-)

  • Very well done to have reduced to seven. Personally I would suggest that you get a pill cutter and continue by half a mg from now on. I was doing this from ten mg and although a bit slower I have had no problems and am now at three to two and a half. The recommendation is reducing by 10 % and you may find that one mg is too much at your current level. At one point my body said enough and so I upped the level by one mg for two days and that worked. It is a case of listening to your body and taking it slowly and you will get there. I sometimes think I could come straight off them but know that I must keep to the recommendations. So I carry on like the tortoise! I found that if I had a busy day ahead I would take the upper dose and on quiet days take the lower dose.

    I hope this helps you but it worked for me.

    Best wishes

  • Thank you for the good advice. I think I've been reducing the prednisone too fast and I should remember your motto to "carry on like the tortoise!" It's encouraging to hear about your system that worked so well for you.

  • Hi Judy,

    What a strange comment from your doctor! Was it meant to be a joke?

    You have done very well so far, but as Patrica implies it may get more difficult as you get lower, for a couple of reasons - you may be getting to the level of Pred which is only just controlling your inflammation ( we are always started on a higher dose to get a grip of things, and then have to reduce to find the correct level) - and the 10% mantra - I.e. don't reduce more than 10% of your existing dose, that obviously becomes more difficult as you get lower.

    Also once you get to around 7mg Pred, your own adrenal glands need to start working again (above that level they are letting the Pred supply the cortisol (adrenaline) your body needs). That's sometimes makes you feel a bit more fatigued until they get going again.

    Would suggest you stick to reducing on a monthly basis, but only if you are virtually symptom free (some people are, but most of us have some twinges). Your stiffness could imply you are just about at your optimum level of Pred at the moment, or it may be because you are doing a bit too much because you feel better. The Pred is controlling your inflammation, but you must remember you still have the underlying PMR, it doesn't cure that. So you need to give your muscles time to recover, and that takes longer than it did pre-PMR.

    It might be sensible to try 0.5mg drops as well rather than 1mg. As you were only diagnosed in Dec 2016, your PMR probably still has a lot of life left in it, unless you're very lucky. Two years is the very minimum it seems to last, but for many it's a lot longer, so don't rush.

    Good luck.

  • You're absolutely right--I've been very tired after going down to 7 mg Pred. You and the other people on this forum know a lot more than my doctor! I hadn't thought about needing more time to recover from exercise because I still have PMR. I've been trying to get back to my old pre-PMR level of exercise. Maybe this is not a good idea. Thank you.

  • No definitely not a good idea! As I said the Pred is only addressing a symptom of your PMR, not the PMR itself.

    Although the inflamed cells in your blood vessels are obviously not causing as much problem as pre Pred, all the time pre diagnosis you were not getting enough blood, energy, oxygen to your muscles - that why they were stiff and hurting - and gradually getting weaker. It's like any living thing, if you don't feed or water it enough it just gets weaker and weaker.

    Add in the fact that Pred itself can cause muscle weakness, and you have a double whammy. That's one of the reasons we're always saying pace yourself - if you exercise one day, you need longer to recover than somebody who hasn't got PMR/GCA.

    You will be able to get back to your exercising regime again, but not whilst you still got the PMR. In the meanwhile you need to do gentle exercise - Pilates, Yoga, Tai Chi, or walking - but not a marathon, and no circuit training with lots of reps!

  • I've been walking and I'm going to try Tai Chi. I have to walk my dog regularly and it's quite hilly where I live. But thanks again for the advice to do gentle exercise. Before I signed up for this web site and learned more about PMR, I was thinking I could get back to my old level of activity pre-PMR.

  • You may well do - but not immediately. There are people on the forums who were competition level athletes before PMR and who have been able to continue at a high level. Most people find that something like 70% of their previous level is what they are comfortable at. Others still struggle to walk - everyone is different.

  • Have a look at the post "Help required to test and evaluate a steroid taper web application". That will give you a link to Sandra, a computer student's project with several different ways of tapering. Sandra has PMR herself. I am using the Dead Slow Nearly Stop (DSNS) taper which PMRpro put on this forum. I use the DSNS version 3 which takes 26 days to reduce each step, but version 2 is also good, taking 38 days, or version 1, 52 days. It depends how slowly you want to try each step and how your body reacts to the reductions. Her work is an excellent resume of so many different ways to taper.

    Best wishes.

  • I'll take a look at Sandra's post. I'm so glad I found this web site after struggling in the dark not knowing how to reduce my prednisone.

  • Just another thought... prednisone also comes in 2.5 mg. I use them, adding the 1mg to get to the correct dose when tapering by .5. Less pill cutting until you get below 2.5! You're at a tricky point now, go very careful and don't over do the day's activities.

  • Thank you for your good advice! I'll check on getting 2.5 mg pills. This forum is so much more helpful than my rheumatologist, who leaves everything up to me and encourages me to take as little pred as I can tolerate.

  • How do you know you are on enough pred? You either don't have any symptoms or they are the same as when you were on the original starting dose. It is your guideline.

    healthunlocked.com/pmrgcauk...

    is a reduction approach that has been used by a lot of patients on the forums and is being used in a clinical study in the north of England - so rheumatologist approaved.

    It is a strange comment from your doctor - but I would suspect he is one of the people who believe that pred cures everything and makes any patient feel like Superman! Would that they knew the truth! And it isn't that!

  • Thanks! I definitely have more symptoms than on my original starting dose. My doctor told me "not to feel too good," which made me think I'm supposed to suffer a little. I'm going to try the dead slow and nearly stop reduction plan you referred to. I wish I had done this when I recently dropped from 8 mg to 7 mg. My stiffness has increased (although not terribly) and I'm unusually tired.

    This forum is so helpful! I read about it in Kate Gilbert's book.

  • Hi Judy, of course some of the symptoms you now have may be due to the steroids, which would not have been true when you first started taking them.

    I am sure your doctor was trying to be funny about not feeling too good. Strange sense of humour some of them have.

  • I have been active, doing 2 miles a day on treadmill (12% grade at 3mph). So you can keep up some form of exercise. Just don't make sudden changes. I can do 3 and be okay. I just do this almost daily. I want to keep my muscle strength.

  • Hi I have just joined and already feeling better about polymyalgia rheumatica. was diagnosed in December 2016, having had stiffness problems throughout the year, I had a bad dose of flue in April 2016, and never seemed to get over it. I had blood tests and my doctor put me on steroids recommended I start on 10 mg Prednisolone I took 5 mg and felt wonderful I told him this he said to try 10mg for a while, I had an appointment with a specialist who took more blood and I had a scan, apparently my bones were ok but he put me on Adcal -D3 then my doctor suggested I start reducing by 1mg per month so on March 1st I took 9 mg April 8 mg May 7 mg, I am now wondering if this is too fast as I seem to get aches I used to have back again. I dont know if this is connected with polymyalgia rheumatica but today I have experienced dull pain in my hips and my knees and legs feel very weak, should I up my dose ?

    Mike

  • Are these pains just as you reduce and improve or are they there all the time? You are closer to the dose you are looking for than most of us would have been at this stage since we started on a higher dose. The result you got with that starting dose is what you are aiming to maintain. No reduction should be more than 10% of your current dose - so you are already above that with 1mg drops.

    Have you seen this approach:

    healthunlocked.com/pmrgcauk...

    It does slow the process down to allow 1mg drops.

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