Hi, glad to find this site today I am 51 yr old female diagnosed with PMR in Feb. My most recent 2.5 mg reduction in Prednisone from 10 mg to 7.5 mg has brought on some shoulder and neck stiffness and pain but also I am feeling so tired after work. Feeling frustrated because I have been trying to increase my activity. Interestingly, on diagnosis my labs were normal it was by sudden onset symptoms that PMR was diagnosed and treated. Is fatigue expected at this point?
Hi shelly, I was diagnosed in March and I'm 54. I'm no expert but fatigue has been a constant problem for me. And from my understanding at 10 mg you should only Reduce by 1 mg or 1/2 mg at a time at this point. I'm currently doing the dead slow method and reducing from 10 to 9 mg, on my first nine day I was very fatigued so considering changing it to 9 1/2. But I'm going to try 9 again tomorrow and see how it goes. I hope this helps
Be careful not to reduce to quickly. I was diagnosed last dec. I am 61 years old. I I was put on 20 mg took pain away + easy to reduce until I hit 7 mg then it has been tough to get body to make cortisol again symptoms and fatigue came back. My dr. Had me take 6 days at 7mg and 1 day 6mg. Next week 5 days 6 mg 2 days 5mg adding 1 day new dose each week. At 6mg trying to get to 5mg now but it is working. This slow reduction really works. I so want to be off the prednisone so I have previously tried to rush it and symptoms came back. Active but stiff in morning. Fatigue is gone. I do Pilates's one day, walk next day, Pilates etc. I feel the exercise really helps and a really healthy diet. Best of luck. It is tough.
HI Shelley, I think the problem is that you have reduced prednisone dose too fast. The rule is not to reduce dose more then 10%, which means that when you get to 10mg, reduction should be in 1mg steps. In addition, search the PMR site for DSNS method of reduction ( slow method with alternating days of now and old dose). This gradual reduction takes 4-5 weeks.
When you get to 7mg, it is better if your reduction is done in 0.5mg steps. The goal is to find the lowest dose of pred that manages your symptoms as well as first does did ( 20 or 25mg). You can only reduce IF PMR activity is slowing down. If you reduce too much too soon, pain and stiffness will be back.
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Hi shelleysinclair, I flared reducing from 8 mg to 7 mg. This time I am going to reducing using DSNS in smaller step. I am enclosing a link to DSNS, if you have questions just ask. Good luck on your journey, I doing my journey with a smile on my face and a positive attitude.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Once you get to 10mg you are much better to taper your dose by 1mg steps. As you get lower you are obviously getting closer to the dose you are looking for: the lowest dose that manages your symptoms as well as the starting dose did. You aren't tapering relentlessly to zero remember.
Below 10mg you are in the realms of your adrenal glands having to wake up and start to produce cortisol again - if they are lagging behind in that you will start to experience the symptoms of adrenal insufficiency and the cardinal effect is fatigue. The smaller the reduction steps the easier your adrenal glands and the complicated feedback system that govern them will have. And the more likely that you won't miss your end point dose - if you overshoot you run the risk of developing a flare of the PMR and needing to go back to a higher dose to manage it.
My gosh, 2.5mg in one go to 7.5mg, why so fast? Under 10mg I was told reduce .5mg a month and things should go well. At around 7mg your adrenal glands have to start doing some work again which can make you very tired as the steroids are no longer producing enough cortisol for the adrenal glands to stay on their holiday.
Hi shelleysinclair, looks like you would be safer with smaller reductions and a longer time between reductions. We all want to be off Pred as soon as possible, but it is safer to take your time, probably short, less painful to reach your goal. Think positive and try to keep smiling. 🙂
Can't add anything to what other have already said. It's not a race to get off pred in a set time scale - we are all different. I atarted at 30mg and with a couple of ups and downs finally reached zero two and half years later. The fatigue persist for quite a while after you stop and it will take months to get back to 'normal' plus my muscles are still weak some 7 months after reaching zero but improving slowly. Keep the faith Shelly!
I bombed out when I tried to go from 5 to 4 1/2...so I have been back at 5 for a week and don't feel ready to think about reducing further any time real soon. Am experiencing really bad fatigue to the point where some evenings I can't do much of anything, barely get myself to bed.
My question is this: I have stiffness and soreness in my groins and thighs especially in the morning. I walk funny. Some days I can walk a couple blocks at a time before resting, some days only maybe 1/2 block. So...is this symptomatic of pmr and therefore to be expected, or does it mean I need to increase pred even more? Thanks...I feel so alone, this forum really helps.
Twopies, I believe in pain free, so I would increase one more time, but wait and see what some of the others have to say. I am sure some of the others will jump in. Good luck on the rest of your journey. 🙂
If the pain goes away when your pred dose kicks in I'd say stick with 5 for the time being, but don't reduce any more. If you are never during the day feeling right, you probably do need a slight increase. Pred doesn't help fatigue and if you don't need it to control PMR symptoms you shouldn't take more, you want your adrenals to start working. That being said, there is a school of thought that people should stay at 5 mg for a number of months, anything from six months to a year.
Good that you are walking, and also that you aren't pushing yourself beyond what you can do these days. Keep at it, slow and steady, and you will find that you start to get stronger and develop more stamina.
I'd say you are a bit too low on pred. If I had those symptoms - I'd try a bit more. I don't really hold with a "pain-free" concept - you know what your best was, that's what you are aiming for. Some people simply aren't pain-free.
So maybe 5 1/2 for a week or so...see if there's improvement? And if so, stay there for awhile? Awhile is...??? It sure seems to be a touch and go thing, doesn't it? (Rhetorical question, I know).
Very likely!!!!
Even 6mg - see what you need. Then give it a month or two and try a 0.5mg reduction again - that is the sort of pattern to adopt. If you don't quite succeed at the new dose, go back to the old one, wait a bit and try again.
If it's any help I've actually found at these lower doses that even a day or two at a slightly increased dose has been helpful. But I have to concede that this is probably dealing more with pred withdrawal than with actual activity of PMR.
Ever individual and ever case is different. You have to try and learn to listen to your body. How you feel and what and how much you can do. Everyone is going to be different, but you can figure it out. Think positive with a smile. 🙂
Thanks Nick. I have not heard of any rules and thought the instructions given by my rheumatlogist were standard guidelines.
Thanks. What does DSNS stand for. Very helpfull info.