Keep reading how each of you change the amt. of prednisone as needed. Here in the US I have to wait for the rheumatologist to do that, can’t just take different amts. or I wont have the pills here. She has to write the prescriptions. Am tempted to take the booklet to her but know drs. Today are annoyed when patients read on line info and tell them how to prescribe. Just curious how all of you alter the amts so often. Great site......under terrible stress right now putting together a museum presentation, no pain with 20 prednisone and 20 Leflumonide but what happens when I see her this week? Will she start backing down the prednisone again? I think so. Thanks.....
How do you all control your pred mgs?: Keep reading... - PMRGCAuk
How do you all control your pred mgs?
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I think you are probably overestimating the amount of adjusting of dose that goes on. And it isn't telling them how to prescribe - but getting them to allow a means of reduction that works for us. The best management of PMR and most likely way to avoid relapses or flares is to allow the patient a lot of say in what dose works for them.
In Europe we are mainly managed by GPs/PCPs who provide the prescriptions and it is relatively easy for us to discuss dose and supply with our doctors. Rheumatologists rarely soil their hands with providing prescriptions - which is just as well since often an appointment is cancelled and not reinstated for months!
I'm not surprised you have no pain with 20mg pred plus 20mg leflunomide - but you won't be able to stay at that dose for long.
I get prescriptions from both my GP and my rheumy, but more often the GP as they get my request for repeat prescriptions. My problem has been that prescribing 1 mg tablets seems to be against my GPs' religion. It doesn't matter which doctor signs, they are measly about the number they'll prescribe. On the other hand they give out the 5 mg tablets like sweeties. I've got enough for months so have to be extra vigilant about the 'use by' dates. I had to make a special appointment with one of them to point out that being on 7 mg per day means that I need twice as many 1 mg tablets as 5 mg ones. Fortunately my rheumy gave me a good number of 1 mg on my last visit.
If they are plain pred you can cut them - and it doesn't matter how accurately they are cut, even cut in 4 they are near enough 1mg. There are some good pill cutters. Why on earth do GPs have to be so intransigent?
I did resort to cutting a 5 mg tablet in half and effectively taking 7.5 mg, although with the little chalky bits that escape it was probably closer to 7 mg. By the way I find the various brands of prednisolone differ a lot as to how crumbly the tablets are. There's one make that tends to go to powder before it's even out of the blister pack.
Yes - and they probably differ in effect too if you are really picky. Tell them you want the brand that is least crumbly.
There are 2.5mgs pred available Marijo (if in the UK).
I know but I really need 1 mg tablets as my dosage is 7 mg per day (ideally one 5 mg and two 1 mg tablets). Cutting the 5 mg tablet was a compromise as my GPs didn't seem to want to give me 1 mg tablets (goodness knows why!)
Keep asking or can you see another doctor? - when you get below 5mg you'll need the 1mgs so why not now - some doctors....It's a waste of 5mgs if you have difficulty cutting them too. When on a variable taper you need all the denominations. I've never had a problem with getting the dosages needed so feel for you - not a stress you should have to be coping with in my opinion.
I am in the US. I have had GP prescribe 2.5 mg tabs and 1 mg tabs. Take as needed. Presently on one mg, Slow taper to this point. Ask GP or Rheumy to prescribe same dose in 1 mg tabs and slowly adjust. I try and manage on a 10 day rolling average. I also live near border and in Mexico no prescription is needed. I had a bunch of 5 mg tablets that way, but don't take those.
Yes I use them! I have 5, 2.5 and 1mg tablets and have to use my problem solving skills to make up the dose. All pills are on my repeat list and I order as necessary. GP asks where I am when I visit, but it is all left to me (Scotland). Gentle forays in to 6.5 mg land now.
I have 10mg, 2.5mg, and 1mg. I just have to fiddle around with hem to get my required dose. As someone else said, it is not always an "accurate" cut, but I just tell myself the very, very slight under or overdose doesn't matter in the long scheme of things. 
That has me concerned==what will occur when she starts dropping it. I have a PET scan a week from now to make sure he 3 spinal fractures are not the result of. Something going on w bone marrow since i have Bence Jones and MGUS but the M spike remains decently low.
You have to see - but we should all make attempts to reduce the dose. If you feel worse at the end of a reduction step then it was wrong - and you should discuss firmly with your doctor at what dose you should continue. Our management should be a collaboration to achieve the best possible control of symptoms. It is going to be complicated if you have other illnesses/conditions as I have found over the last couple of years - high steroid doses (up to 15mg for several months) have been needed to manage a cardiac problem that the cardiologist couldn't sort. Eventually it was identified I was having asystoles of up to 7 seconds and a pacemaker has cured that. The result - I have been able to reduce to 10mg in a matter of 2 months!
To take an active role in managing your PMR I suggest reviewing the 2015 Recommendations link below which states treatment should be based on a shared decision between patient and treating physician:
"Box 1. Summary of the 2015 European League Against Rheumatism (EULAR)/American College of Rheumatology (ACR) recommendations
for the management of polymyalgia rheumatica (PMR)........................
D. Treatment of PMR patients should aim at the best care and must be based on a shared decision between the patient and the treating physician."
rheumatology.org/Portals/0/...
2015 Recommendations for the Management of
Polymyalgia Rheumatica
A European League Against Rheumatism/American College of Rheumatology
Collaborative Initiative
By default really. I am still being prescribed 7 mgs so I am afraid that I hoard. I need to watch expiry dates though.
My doctor leaves it up to me. My repeat prescription is for 28 x 5mg and 100 x 1mg of prednisolone a week. I am now on 4.5mg a day so only order the 1s and occasionally the 5s.
Sorry I am daft! That is for a month (must be Pred head)
Know that feeling! I imagined you sitting on a Pred mountain 😂
I'm also in the USA, and early on I had this issue, so I "dropped the entire bottle in the sink" the day after I picked up my prescription.
Rinse and repeat as needed.
I am in the states and took the tapering plan to my primary care physician, she is letting me use it and has used it for other patients.Worth a try!
In Canada, I only get 1 mg tablets now, but I get them by the bucketload. Current prescription is for 200 x 1 mg, three repeats. This is indeed so I can adjust my dose as required to follow the dead slow taper.
I have had the impression from the dr that she thinks some people actually LIKE prednisone! I hate it, but I do feel good right now so won’t complain and will face each day with whatever arrives on my doorstep..
These misguided souls crop up every so often. If the alternative to pred is constant, debilitating and disabling symptoms, who WOULDN'T like pred? The only reason I take pred is because I have no pain and can move. And despite repeated questions to the cardiologist, until recently she claimed she couldn't see/do anything about a cardiac symptom I had, I was taking more than I now need.
My GP thinks pred makes everyone feel better - I have tried to disillusion her of that idea! In her case it must have something to do with everyone starting to eat better on pred - works for my OH. But that is also because there is something going on with him that pred improves - even if the doctors can't see it.
One of my GPS said the same. I suppose for some steroids give an extra whoosh of energy, although they make others feel tired. And then I gather old aches and pains can come back when tapering in the low numbers. I’d still rather that than Pred though!
Here is how to do and have some reserve of pred if you need it... When you see Dr next time, and he/she tells you to start taper, you can say that you will try, but just in case it does not work, you would like to have enough pills to cover 20mg until next appointment. As you reduce, you will end up with extra pills before next appointment and that is what many use in case they need temporary increase.
I do not go to rheumy, just to my GP (in the U.S) diagnosed last December, started on 20mg. I am now down to 6mg per day. This is through my own volition. I think we have to assess not only the relief taking prednisone, but the harm that medicine can do to the body. Each of us is different. I am willing to put up with a certain amount of discomfit, such as heavy tired legs, which constrict some of the activity I was used to doing, in order to protect my eyes ad my heart.
I hear what you're saying, but there's another factor to consider.
Pred is not a pain killer. Your pain is diminished by taking pred because it is clearing out the inflammation settled in your circulatory system by PMR. That inflammation does damage in and of itself. PMR can cause damage to the aorta, leading to aortic aneurysm.
Inflammation that is barely controlled, or uncontrolled, by too low a dose has its own risks. Your dose should control your symptoms to the point where you can lead a normal life on most days. Barring other conditions complicating matters, and making minimal accommodations, you should be able to exercise, get in and out of a chair or bed, walk, move about normally, and socialize. You may be somewhat less active than before, needing more rest, but you should not be dealing with "heavy legs", nor with a level of pain that significantly restricts your ability to move for significant periods of time each day. And, any increase in stress, whether from life or from infection, is more likely to send you into and/or intensify a flare, setting back your recovery and likely resulting in needing more pred for a longer period than had you taken the 0.5mg or 1 mg more needed to adequately control your level of inflammation. And none of this takes into consideration that approx. 20% of us with PMR progress to GCA, which required expotentiially higher doses of pred to to prevent blindness and stroke.
I understand the concern about your eyes, but let me tell you that having had cataracts and had them removed (both long before having come down with PMR), it's less painful than going to the dentist. Glaucoma is easily treated with eye drops. And you may have developed one or the other or both anyway depending on a number of factors, including the genetic heritage that may predispose us to PMR.
I often say that useless suffering is useless. The reasons above support that argument.
I second what you say about the cataracts operation. I had both my lenses replaced a few years before I took ill with GCA and PMR. The operations were very easy and straightforward and it was one of the best decisions I ever made.
It's great being able to see the stars again!
I'm sure it is. Unfortunately the light pollution in London means I don't see stars. I remember being amazed that I could count the bricks in the block of flats opposite my living room.
I live in New York City. I thought it was light pollution, too.
It was the cataracts!
Golly, you can actually see the stars in NYC? I'm very envious. When I visited my daughter in Brooklyn I don't think I bothered to look for them...
Off topic, but NYC is my most favourite place on earth! I don’t care if you can’t see the stars. Atb x
I am willing to put up with heavy legs. I do not want to take risk of ending up again in hospital due to heart problem. Already had double bypass surgery. Also have raised eye pressure for which I take eye drops twice a day. All risks have to be evaluated. I prefer trying a couple of Tylenol to see if that helps rather than take a medicine that s known to have various deleterious effects
Despite Good Grief's generally excellent comments I must disagree about the "heavy legs". I have found throughout the tapering process that various symptoms developed, then as the taper continued, diminished and eventually went away. One of them was "heavy legs". I can't remember now exactly when it was but if memory serves me it might have been at about 4 mg and lasted for some months. I often felt like I was walking through treacle. I had trouble keeping up with my son, for example, if we were out for a walk together. But the symptom, whatever it was, gradually went away, and now I am walking quite speedily again. I didn't ever consider increasing my pred dose, nor even slowing down my already slow taper, because the significant effects of PMR were as far as I was concerned still completely managed by the pred dose.
Good Post. I agree with you. Part of my heavy legs, I believe, is due to muscle strength loss which has to be rebuilt over time. Yesterday I had, somewhat, my rusty robot legs, to-day they are OK. I have just tapered from 6mg to 5mg. I would like to have gone down just a half an mg., but the pill content is difficult to adjust, even with a pill cutter.
I'm in the US also. You will find as you begin to reduce you will have leftovers. My rhuemy gives me either a 30 day or 90 day supply. I must see him once or twice a year. The pharmacy calls in for refills. I've never had a problem having what I need. 3 yrs 5 months 6.5
I'm also in the US. Early on, my rheumy forced me into a too-soon, too-steep reduction that resulted in a flare that nearly crippled me for 6 months.
When next I saw her, I told her that I needed to go back up to 20 and stay there until the symptoms abated, that I wanted control of my dosage, that I could sue her for the effects of uncontrolled inflammation just as easily as I could sue her for the side effects of pred, and that I chose not to sue her for either as long as we worked together and used my pain as the barometer of my condition. I told her that I wanted to recover, and with a minimum amount of damage from either, and wanted her expertise and guidance, but that I was going to be in charge. The decisions were mine to make, not hers.
She listened. Since I took control of my medication, I've had no flares, no injuries, and have made a slow and steady reduction to my current level of 5.5mg. My blood pressure and insulin levels are normal. My inflammation markers are within or barely above normal. My Dexa scan results are excellent and I show no signs of osteopenia or osteoporosis.
I am careful. Mostly, I stick to the program. But when something is on the horizon that is a stressor that could set me back or induce a flare, I am proactive. I don't wait for an increase in symptoms before I act. I know that when bad weather is coming, especially ice and snow, I'm going to need to up my pred to handle the increased activity and keep my balance and flexibility to prevent injury from a fall. When I feel a cold coming on, I don't wait until I'm in pain to up my pred. I go up 0.5mg or 1mg for a few days, then resume my former level.
If your condition is not improving, is is prudent to look for reasons. I am an executive at a financial institution, so I understand long hours and work related stress. Look for ways to reduce both. When you're good at your job, you really don't have to respond by being stressed. You were good enough t get it. You were good enough to keep it. Nothing's changed except maybe you're doubting yourself because you have PMR. Don't. Look for ways to offload tasks that can be done by others. Delegate jobs and projects to staff and monitor them instead of doing them (you'll actually be doing them a favor by increasing their responsibilities and giving them a path to promotion). If you just need some physical assistance because yoor hands or arms or legs don't want to do it, let someone help you. You'll be shocked to find out how many kind and competent people surround you.
Be strong. Be well. Be in charge. Don't sweat the small stuff.
Great advice !
I’m in Canada and my GP diagnosed the PMR and gave me my first 2 months of pred while I waited to see a rheumy. When I did, she insisted that I follow the same (textbook) taper as all of her patients. The result, I flared and had to go back up. She wrote the pred prescriptions but refused to give me 1mg uncoated tablets so I could taper at my own rate. Meanwhile I went back to my GP and he gave them to me, and after 3 appointments with the very unprofessional rheumy, I dropped her and am now overseen totally by my wonderful GP. Of note, I did save some of the 5mg pred tablets I was first prescribed for emergency purposes like when I travel, and I always have a dose with me at all times just in case.
Try to advocate for what your health and what you need. As already mentioned we need to be able to collaborate with our health care providers. We are experts in our bodies and symptoms, many of us self educated about PMR, and they (should) have expertise in auto immune conditions.
All the best with your next appointment.
I also live in the U.S.A. I have a Rheumatologist that has been taking care of my Giant Cell Arteritis and PMS. I started at 60 mg Prednisone when it was first diagnosed by temporal artery biopsy. I had a GI bleed and had to go into the hospital for a colonoscopy to stop it. (Most probably caused by the steroids). I have gradually decreased my Prednisone and after two years I am now down to 3mg a day. Every time I have decreased I have a week or more of feeling yukky...then it seems to get better. I am decreasing to 2 mg next month (for the month) and then hopefully to 1mg. However, every time I decrease I am pretty terrified that it will all come back again. Every time I get a headache I think it is the GCA coming back.
If you re not happy with your Rheumatologist you should find another one. Mine has been very sensitive to my needs and how I feel. I am sure there must be one out there that can listen to you and be responsive to your needs. Good luck.
Stella, I'm glad you are able to reduce so well, but at the lower doses, I have read from PMRPro and others that it might be safer to reduce by .5 mg rather than 1 mg at a time. However, if it is working for you, maybe you are the exception. I also am glad to have found a decent Rheumatologist here in Michigan, thankfully. Good luck with your taper.
What a nice reply. Thank you! And i do hope you continue to improve. I should withhold judgement for a bit, I think. What threw me off was the first time the decrease brought on a major relapse, she said she didn’t think i could tolerate the prednisone and she added Leflumonide and i’m Just now at the one month mark taking both. The idea is to now start backing down the prednisone but keep the Leflumonide. Just since the steroids were started in October I have had 3 stress fractures in the spine, sacral and thoracic, so I know she is concerned .
My Dr, here in Michigan, allows me to taper as I see fit...I get a script for 1mgs and 5mg, now that I’m under 10mg.....he will be the first to say that he is not an expert with PMR..in fact he “thinks” he only has one who has had it...I won’t be visiting a rhuemy unless I think it’s very necessary...so far I’m on a nice slow taper, currently at 5mg..was attempting 4 but decided not until the summer holidays and all the family parties are over...only real problem I have now is occasional stiff and sore joints and fatigue, mostly in the morning..evenings I’m fine..
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