GP started me on 20 mg of pred. on Dec. 22. Stayed on it for 10 days and was doing well. I told him my concerns with pred. and so he reduced me to 15mg on Jan2nd. Pain was very bad within 2 days so went back to 20 on 5th of Jan. Pain would not subside so went to 24mg. It worked but went to Rheumatologist and he told me to drop back down to 20 on Feb. 2. I just did this today. He wants me to stay here for 2 weeks and then drop to 17.5mg. Stay there for 3 weeks and drop to 15mg. Another 3 weeks go to 12.5. 3 more weeks go to 10mg., and then when I get to 10mg. drop 1mg every three weeks until I get to 0.
Rheumatologist diagnosis was PMR.
I am new to this. I am a very healthy 57 year old male. I live in Idaho and PMR is not well know around here. Where are the graphs showing how to taper off of Pred. when you have PMR? I would like to show them to my GP and my Rheumatologist. Any help would be very much appreciated. I am worried about how fast my Rheumatologist is tapering me off prednisone.
I also just switched to a night shift at work. I told my Rheumato logist I was worried about by body getting tired when I switch to a night shift and he told me to take the prednisone twice a day. That is what I am doing now. So far ok but just started taking 20mg/day. 10mg in am and 10mg in pm.
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stevena7
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In the UK being on prednisolone is a reason to be excused working night shift - not sure what sort of in-work protective legislation there is in the US - do you have an occupational health department where you work?
I think you are right to be concerned about the speed of that reduction - PMR is a chronic disease which usually runs over at least 2 years in a quarter of patients and these patients are more likely to develop a relapse later. Half need up to 4 to 6 years to get off pred.
This link takes you to a post on another UK PMRGCA forum (where there are a lot of people in the US by the way) which contains a lot of links to useful reading for you:
The "Bristol paper" listed in that post has a recommended taper over 2 years for PMR, 2 1/2 for GCA - but always under consideration of symptoms returning. They are always king. It is written by a top UK PMR specialist to assist GPs in managing PMR and to know more about managing their GCA patients (who should be under a rheumatologist in their opinion). This has been found to reduce flare rates to 1 in 5 instead of the more normal 3 in 5.
Many patients find that even that speed of reduction poses problems - which is likely of course if they are going to need to be on pred for far longer than 2 years and most of us are. In the replies section in that thread is a description of a very slow reduction which many patients on the 3 UK forums have used to get to lower doses successfully. It is also on this forum, here:
You look a pretty big guy (unless that is a very small fish) - you will probably need a bit more pred than a dainty lady. And remember that you also have to do your bit in managing the symptoms. PMR is name given to the symptoms of an underlying autoimmune disorder that causes inflammation which leads to pain and stiffness. The pred manages the inflammation - it does nothing for the underlying cause. Your muscles remain intolerant of acute exercise and you have to give then some TLC! Learn your limits in activity and stick to it - your muscles tire more easily, they don't warn you they are tiring until you hit a brick wall of fatigue, and they take far longer to recover afterwards. Do exercise - but walking rather than running for the moment, avoid repetitive or sustained actions if you go to the gym, the muscles do better if you do a bit, rest a bit so they recover, do a bit more.
And my personal advice? Find a rheumy with a better idea about what PMR is and how to manage it - because a reduction to zero over 10 months is unlikely to work. Unless, of course, he will modify it if you have a relapse. Men often do better than women at getting off pred - but some don't. You can't tell in advance who is going to be able to go quickly.
Thank You Thank You Thank You PMRPro and DorsetLady,
I will show this information to my GP. It sounds like I should not reduce more than 10% each reduction of prednisone. I guess I am a little confused about where I am right now. I was on 24mg and am now on 20mg. That is right at 16% drop. Should I try to just reduce by 10% and take 21.5mg? I was on 20 for some time so I am thinking I will propose trying the following.
After reading the information you sent me this is what I will propose to the Doctor. I just wish I could get down to 15mg sooner because this is where the report you sent me says most people start. What are your thoughts.
20mg for 6 weeks.
18mg for 6 weeks
16.5mg for 6 weeks
15mg for 6 weeks
12.5mg for 6 weeks
10 mg for 1 year.
1mg lower each month here after. (But try the alternating option you showed me)
Yes PMRPro I am pretty good size. I am 6ft 245lbs. I am in very good condition. Yes that is a big fish. I love to fish and hunt so I am trying to figure out how to keep doing this while I have PMR. I did purchase a tree stand and am buying a new bow that is easier to draw. I want to keep doing what I like to do but I realize I may have to modify some things. We will see how it goes. One problem I also have is this pain is also in my left knee. So I know I will not be running for some time now. But at the same time I am just glad it is not something more serious like cancer. We can and will get through this stuff. Thank all of you for all of the advice.
This is what I have started doing every other day and it seems to be helping me feel strong and well. Especially right after I get out of the Sauna.
I am currently working out but with light weights. I walk on a treadmill and ride a stationary bike. About 20 minutes on each. I lift 20 lb. dumbbells. I do curls, extensions, butterflies, chest presses and flat rows. Before I would be doing 40 or 50 pound dumbbells. So far so good with 20lbs.
After this I get in a sauna and do the following: I sit for 10 minutes to get my muscles hot. I then stretch shoulders forward and back. I then stretch hips, quads and calves. I then do 2 sets of 10 body squats. I feel really good when I get out of the sauna.
I also am drinking green power drinks in the morning and trying to stay away from all but a small about of sweets. I also am mixing chia seeds in juice or milk. I drink these drinks and it helps with the cravings for food. Plus chia seeds are good for you.
Please let me know what you think of the plan I put together to reduce prednisone.
Also please let me know what you think about working out and taking a sauna and stretching at the same time. Yes I drink lots of water to keep my hydration up.
Thank you again for all you do to help people like me who gets blindsided with PMR. I decided to do what I think is best. It is a blessing to see all of this information you provide.
It is comforting knowing I have a place to ask question. And a place where I can go and not feel like I am alone in this process.
You probably don't need 6 weeks at each new dose - at this level 4 weeks would be plenty, maybe even 3 weeks. You just have to try it and see if it works for you - but big steps or every weeks steps isn't really a good idea.
For 5 years my joy at the gym with untreated PMR was the steam room! I could move afterwards. If you are OK with those times and weights fair enough - but it's less how you feel when you get out of the sauna, it's if you are in pain the next day! If so, then consider doing maybe 10+10 instead of 20 mins with a break between to rest the muscles and let the waste products of exercise wash out - or keeping the walking for later in the day outside perhaps????? Your muscles can't tell you they are tired and the waste products take far longer to go, keep the levels within limits and you won't get sore muscles next day.
But I have seen that people who were trained before PMR are able to do far more with PMR and, in some cases, with graded exercise during recovery, are over PMR faster than women or less trained men. There is a role for exercise in recovery from PMR - but it has to be appropriate.
Thank you for all the help. Yes I think stepping out of the sauna is the highlight of my day. I feel so good and revived. I will try to cut down the duration of the prednisone when on the higher doses and draw out a new plan.
20mg for 3 weeks.
18mg for 3 weeks
16.5mg for 3 weeks
15mg for 6 weeks
12.5mg for 6 weeks
10 mg for 1 year.
1mg lower each month here after. (But try the alternating option you showed me)
Hello PMRPro, I have an odd feeling between my shoulder blades on my back. It happens multiple times a day. It feels like my nerves are firing off. It feels like a little electric current is shocking me by my left shoulder blade on my back. It is between my shoulder blades but a little closer to my left shoulder blade. I tried to explain it to a friend and I said it kind of feels like a bee is under my skin and buzzing. It will last for a couple minutes and then go away for a couple minutes and come back and number of times in a row. Then I will not feel it for many hours. It seems to have started after this PMR pain started. Have you ever heard of anything like this? Also it feels like my heart beats very hard at times. I can feel my pulse in my hands when I put my hands together and cross my fingers. Any ideas? This is very intermittent. Maybe I am paying to much attention to my body these days?
The first could be due to myofascial pain syndrome which is often found alongside PMR. It is a more localised effect of the same cytokines that cause the inflammation in PMR - and they can form concentrations as trigger points in pairs on either side of the spine, in the shoulders, about rib level and in the lower back. These in turn can either trap nerves or make other muscles go into spasm and trap nerves - leading to this referred pain that feels like electric shocks. There is another effect which I suspect is also due to PMR which also leads to sensations of electric shocks down your limbs but it is different. A good physio or sports massage person can mobilise these trigger points with time or a faster way is using cortisone or muscle relaxant injections into the trigger point. That requires a doctor, even in the US I imagine. However - I have had it sorted out using a technique called needling in the US and that appears to be available in other physical therapy practices sometimes.
The palpitations bit I'd really see your doctor about. I developed atrial fibrillation that wasn't diagnosed until I had a reaction to a drug but the cardiologist is confident it is due to the autoimmune part of PMR which has damaged the electrical cells in the heart. Once it was managed with medications I realised it had been there for a long time, since early in the PMR story and I had asked the GP but of course, these things never happen when you are at the doctor! He did suggest that when it was happening I should call the emergency services - in the UK all ambulances carry an ECG machine and get there quickly so have a better chance of catching a trace of whatever it is.
I think we are more aware of our bodies when we have a chronic illness, especially when it is a new experience. However, that isn't always a bad thing!
But you will learn in time, and it's not easy for someone who is usually very active, to pace yourself. Just because you feel good one day don't think you can do what you did prior to PMR, because your body can't cope - the following day you will think you've been run over by a truck!
If you reduce the Pred too quickly your pain will return, as you've already found out. The Pred needs to get control of your inflammation in the first place, which yours did, and then as you reduce it needs to keep control of that inflammation - which is why it needs to be done more slowly than your doctor instructed. I don't know why they insist on such fast reductions, they must know the reaction of most patients. Most experts recommend no more than a 10% drop at each reduction.
You say you are concerned about Pred, we all are, and yes there are some nasty side effects, but it is the only thing that controls the inflammation - so we're stuck with it! And the last thing you want to be doing is yo-yoing up and down because you are trying to reduce too fast.
Not sure about the night shifts, probably too stressful, and that's the last thing you need. As PMRpro said can you discuss with your managers, union rep or whoever to change back to days. You may find in a few months you feel well enough to try nights.
Nice king, spent most of my adult life in Alaska. Missed the entire hunting season this year due to PMR and am being very careful with outdoor activities since a PMR flare could be dangerous. I cancelled all multi-day river trips until I really am confident. There is a lot of information on this forum for prednisone management. It is different for each individual and you really have to listen to your body. Each time you drop a dose reduce your activity for a few days and pay attention. I now live in the Upper Peninsula of Michigan and the information and understanding of PMR was lacking. That is where you come in as an educated patient so take the time to look up some of the previous posts (especially PMRpro) as there are several links to articles as well as the Dead Slow dosing schedule. One thing that I have found that so far has worked for me is a week of alternating old and new dose before going onto the new dose. I go three weeks on the new dose, a week of alternating and then the new dose for another three weeks. The rheumatologist I saw suggested I set it up so the new dose always begins the first of every month to help with planning. As my dose lessens I plan to go the Dead Slow method. You can expect to be on prednisone for a minimum of 18-24 months. Because you won't know if the disease has gone into remission or burnt out there is no alternative other than go too fast and have a flare and go about to the previous dose. That is what most people want to avoid. Rest is another critical factor to this disease. If night shifts prevent you from proper rest consider any alternatives and if not make sure you get your rest somehow. Last thought is do the math, never exceed a 10% drop from old to new dose (or as close as practical).
Thank you for the information autrainriver. Yes one great fight to get that king (Chinook) in. Yes it is going to be a challenge for me not to overdue it. I am making plans to only hunt where I have cell service. (Call for help) I also just bought my 25 year old son a bow so he can go with me. I got my elk last fall and I know it will be a challenge this year to get the meat out. But I purchased a tree stand and my son will go with. The funny thing about this PMR is that people just think I can go do anything I want after I tell them about PMR and how Prednisone is working for me. My nephew just asked me to put in for a permit with him on the Middle Fork of the Salmon. I told him I better not and he was a little shocked that I would not go on a trip like that. If you do river trips you may have heard about the Middle Fork of The Salmon. But I plan on trying to take it a little easy for a couple years to give me the best odds of getting through this and not having it come back. I am curious what you hunt and where you hunt and what rivers you float. You can email me this information and maybe we should encourage each other and plan a fishing trip when we get through this PMR. My email is sasaleen@msn.com
I am also going to ask PMRPro another question so feel free to look at it and let me know if you know anything regarding my question. Yes I am trying to get all the information I can and do the best I can to have a plan. Thank you for you advise. Hope to hear from you.
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