Hi - I am not under reliable care at the moment, and have just been diagnosed with PMR, with pain in hip girdle area and neck. My primary care doctor "doesn't have time to see me", and I can't be seen by a rheumatologist until 11/29/22. My primary doctor has given me a bottle of 20 mg prednisone pills, and has told me to take 60 mg (3 pills a day) for the first 7 days, and then reduce to 40 mg daily (2 pills) for the next 6 weeks until I see the rheumatologist. This is much higher than I think I should be taking. Everything I read indicates a starting dose of 12.5 to 20 mg to start out. I am so reluctant to take the prednisone (the devil's own magic potion)... I'm fearing all the bad side affects, but understand that this is what I must do. Can anyone help me understand if the dosage guidance given to me by my dr. is within reason? Thank you.
Just diagnosed with PMR yesterday, starting 60mg ... - PMRGCAuk
Just diagnosed with PMR yesterday, starting 60mg Predisone to start, too much?
Gosh I started on 15mg for PMR. I could imagine up to 25mg might be necessary but not 60mg. Have any tests been run to confirm what is wrong with you?
I actually self diagnosed because my physician was too busy to see me. My mom and a friend had it a few years ago so I was aware of it. I asked the dr. to order labs for sed rate and C-reactive protein, which were both high, thus the PMR diagnosis. I don't have CGA, and I would say that my PMR symptoms are moderate. I have pushed the doctor about the high dosage, and she just repeats TAKE IT AS PRESCRIBED. I don't have any faith in this. I've already taken three 20 mg. pills in the past 24 hours, and I really want to reduce to the least acceptable amount. I've just gotten my "new" rheumatologist's email who isn't able to see me until 11/29, and I am asking him for clarification on dosage. I hate not being able to move well in the healthcare environment. It makes a bad diagnosis that much worse!
I wouldn't want to take a high dose for an extended period on the instruction of a GP who hadn't been willing to see me.
Sounds like he may be confusing PMR with GCA
60mg for PMR is certainly OTT, as you say usual guidance is between 12.5mg to 25mg.
60mg is usually for GCA patients with sight disturbances…..do you have any? If not, then really don’t understand why he has gone so high.
The only thing I can imagine is that he is used to prescribing them on a short term basis for acute occurrences in asthma or COPD for example, and really doesn’t understand PMR.
Not sure Rheumy will be too happy with such high does either, as they are going to completely mask all pain.Even when you see him you still be at 40mg, and still way above PMR levels, so not much good as a diagnostic tool.
Any possibility of contacting Rheumy before appointment for advice?
Thank you - you have confirmed my concerns. I just found how to connect with my Rheumy to tell him what my GM told me to take and asking for clarification. I hope he responds before I have to take another pill!
I hope so too… I was was on 60mg for 8 weeks -and 80mg for 2 weeks prior to that -but for a very good reason. Not the most pleasant experience I have to say.
Please keep us informed-and good luck
I started at 15mg. Doc wouldn't let me go any higher, citing possible side effects and complications as the reason, even when I had massive pain in shoulders and hips, and was as stiff as an old door.....
No it isn't within reason for PMR! The recommended starting doses are "the lowest effective dose in the range 12.5 to 25mg. Exceptionally it may be 30mg.
rheumatology.org/Portals/0/...
60mg is the starting dose for GCA with visual and jaw symptoms.
If it were me, knowing what I know, I would maybe take 30mg - 1 and a half tablets - at most. It is appalling to give a GCA dose without having seen you and when you have absolutely no symptoms suggesting GCA. They are supposed to work on the precept "First do no harm" and the potential adverse effects of 60mg for that long when you really don't need it could come under that heading.
Can you call the rheumy and explain the dosing problem? Even if you have to go via the receptionist and a nurse it might be worth the try.
You could try 20mg for the first week and see if it works. If it doesn't it may not be PMR as you should have some relief in that time. Your doctor nay be just giving a high dose as belt and braces as he is not seeing you!!
I have taken 3 - 20 mg prednisone pills in the past 24 hours, and my symptoms have reduced by about 85% - a great result. I feel pretty confident that I have PMR. I have reached out to my rheumy (who I can't see for 6 weeks), and my GP, and if I don't hear anything from either, I am going to reduce to 20mg daily. I can't see any evidence anywhere that suggests I take more. And, I have borderline high glucose so am very concerned about diabetes.
Good move. You have knocked the PMR on the head with the 60mg. It seems sensible not to take more steroids than you need as they do have side effects.
Hicanadacando 😊
I hope 20mg works for you and that you hear soon from rheumy or GP. It seems to me to be totally out of order for a doctor to put you on high dose steroids for weeks on end without seeing you!
I wish you all the best. Take care - and in the event that you get head pain/jaw claudication/visual symptoms, then obviously up the dose again, and get in touch with those docs x
Thank you!
Absolutely dreadful ‘service’ from your GP. It’s shocking to prescribe such a high dose of steroids without actually seeing you. If GCA is suspected then you need to be seen urgently by a specialist.
I would change GP as soon as you can. She sounds unprofessional and I would not have any confidence in her.
I fired mine especially because he told me not to speak but only answer his questions.
that’s disgraceful 😮
Yes, luckily open enrollment starts soon, and I will definitely be changing to a PPO. That said, I still need to deal with the next 3 months.....
Well, I sent the College of Rheumatology guidelines to my GP, and she responded: "Glad you are researching your condition, please go down to 40mg for 3 more days, then drop to 20mg po daily until you see rheumatologist.. Do you have any eye blurriness, temporal pain, or jaw pain?" Goodness, now I see the true meaning of being one's own health advocate. Sometimes we have to fight with our caregivers to get an educated treatment plan. I should report her..
I would ...
One of our aims here is to provide the information patients need to stand up to poor medical care. We shouldn't have to - that doctor could have googled the recommendations herself. And another patient would have accepted the original instructions. It is all very well - that high dose has achieved the desired result. But the whole point is that using a moderate dose of pred and achieving a similar result is not only a whole lot safer but it is a characteristic of PMR that it responds in this way to a moderate dose - a lot of other things will respond quite dramatically to 60mg and you have lost the opportunity to use it as a diagnostic tool.
Exactly! When I spoke to prof. Dasgupta, he told me he has revised his opinion of using pred as a diagnostic tool unless the symptoms are very clear. Pred will work for a number of conditions and it is easy to jump to the wrong diagnosis because of this. I would be putting in a complaint about that GP if it were me!
Too many doctors take a response to pred as diagnostic or not - but the original concept was for 15-20mg. As soon as you make is a criterion you are on shaky ground - a lot of people need a bit more, it only works if it is enough, but if they don't respond to 15mg it is immediately said it isn't PMR. And others use far too much as I said above . All you can do is use it as a brick in the wall of evidence and definitely not as a keystone. But anyway, they are selective. I took 15mg and 6 hours later had at least a 75% improvement - and he still didn't want it to be PMR as it didn't fit his view. No evidence after 18 years of symptoms that it is anything else.
I think that's exactly what the prof was getting at. In my case the symptoms were patently obvious, but because there were no inflammation markers in my blood the rheumy would not accept this. 😡 The second rheumy I spoke to agreed tht it was PMR and wanted to start a trial of pred but would have to run it past the 1st rhemy as I was not his patient. Of course he said no - not enough evidence. That's when I exploded! Consequently I was passed on to the head of rheumatology in the hospital trust who put me on a week's trial of pred (15mg). The rest is history... My point is you have to know your stuff and SHOUT! Thanks to this forum I had the knowledge to do this.
I wonder how much members of this forum had to do with his change of tune!!!! Not the only thing we changed ...
I was textbook PMR except the symptoms started when I was still 51 and crept up gradually over about 9 months and my ESR/CRP were never out of range though the ESR may have been raised for me. I didn't know enough to ask then. At one point during a major flare it was 16-18 - my normal is low single figures.
Not sure he did change his tune - was taken out of his hands and I have never seen him since!
I met him a long time ago - a few things he said that day disappeared over time to adopt the views a few of us on the forum championed.
I liked the prof enormously. He was easy to talk to and very open about how his views have changed. He was also very impressed with how much I knew about my condition and I did tell him why!
When did you see him?
About a month ago - he was doing some clinics at our hospital at the time of my monthly review and my rheumy asked me to meet him. Apparently he is particularly interested in patients who have PMR at a younger age. Don't think I was a particularly interesting case though, as he confirmed I have no longer any active PMR! Nice to have met him though, although he did say I was to have no more fternoon naps😂
Yes, we do have to be our own advocates and your situation is clear proof. Well done for persevering.
As far as reporting your GP, I feel that a letter to your GP (with a copy to the practice manager) would not go amiss. His praise for you researching your own condition is not an excuse for what amounts to negligence. To prescribe high doses of potent medication without seeing the patient is, I feel, highly irresponsible.
Best wishes going forward.
I actually started on 20mg. After a few days I felt great.
The people that started on 60mg were usually the ones who had giant cell
This is what I was led to believe anyway.
I started on 40 mg - could be to do with your weight? I am obese on BMI scale.
So was I - miracle with 15mg. Weight isn't as important as you might think.
Call your doctor’s office every day to see if there is a cancellation. Sixty milligrams is much too much unless you have GCA symptoms.
I started at 40mg bumped to 50mg for a week it depends on your size/weight how intense your symptoms are and your inflammatory markers… any less than 40mg I question if it would have helped me right at first.. the bump to 50mg made all the difference but everyone is different you could always take 15-20mg see if it helps then adjust best of luck
Hi…I was seen by Dr Alam a Rheumatologist at Marshfield Clinic in Wisconsin. He diagnosed me with PMR and prescribed 20 mg Prednisone. It worked like magic. Over 11 months he guided me to 0. I do believe in following your doctor’s advice but maybe a second opinion is advised.
Thank you all for your support and encouragement! You all have really helped give me the focus and motivation to keep speaking up - being my own strong advocate when no one else seems to care. I woke up this morning feeling 90% better than 2 days ago, and I will be taking 20 mg Pred. for 7 weeks until I see the Rheumatologist. I am pre-diabetic. The way it is going, I will have no doctor overlooking my progress for the next 7 weeks - shall I monitor my glucose myself? Does anyone have a suggestion about how to handle that when no one is monitoring me?
I’m 140 lbs, 5”5’, so I don’t think a higher dose would be needed because of that.
Cut your carbs - especially processed carbs and added sugar though I imagine if you are diabetic you are pretty good about that anyway. Some have tested frequently to identify when their BS is up - one found it was during the afternoon so didn't eat to add to that during that time. Someone else found if he exercised immediately after eating - just a walk did - it modified the sugar spike. Like everything else, I suspect everyone is different.
I had a tendency to run high sugar when on initial dose of pred (15 mg) and to some extent until at or below 5 mg. I controlled this by giving up virtually all "white" carbs (wheat mostly) and not much of a sugar consumer anyway so that was easy. Filled up on non-meat protein (eggs, nuts, seeds, cheese) and salads full of good veggies. I was shocked to realize how much wheat I consumed through the course of a day and it did take some planning when giving up old standbys for evening meals. My daughter, a dietitian, told me to eat some protein any time I did have carbs, and I didn't give up root vegetables like carrots and sweet potatoes, nor fruit.
You have had all the sensible advice needed and glad you have taken on board. You are in better hands than that Dr. Good luck with the journey.
I was given 80mg by my internist to start with. Not good! I grew cataracts in two months to the point of needing cataract surgery because my vision was so bad.
I’m in the USA also. I don’t know what is up with doctors here. He said it was because of my weight! If I’d had known I would have only taken 20mg.
Others will have more to say. Hope they get it right soon. And don’t let them push you down too quickly because it caused me to flare twice and have to start again at 15mg.
Good lord - what do you weigh? A few tons? In GCA they have a maximum starting dose, 1mg per kilo up to a maximum of 70mg (I think) although the usual recommendation is 40-60mg/day. there is no such weight recommendation for PMR. Where on earth do they come up with such claims?
The exception is a 3 day pulse therapy in GCA of 1000mg/day administered by infusion in hospital.
I know! Crazy and I fired him when he said I had to choose between him and my first rheumatologist.
I'm SO happy - my "new" rheumatologist, who I won't be able to see until 11/29, just messaged me about what Prednisone dose to take. He said that yes, the dosage given to me by my GP is not at all advised. He said "You can start at 20mg daily for 2 weeks and then 12.5mg daily for 1 month. My office will contact you." Wow! I would have been taking SO much Prednisone had I followed the original instructions of my GP. Yes, self advocacy can also be a life-saver! 😅😀
Oh what a relief! Much more sensible advice. Although - be a bit careful about that recommendation for dropping from 20 all the way to 12.5 in one go. I'd be tempted to drop to 17.5 , then 15 and so on. If you feel the symptoms building up at any level wait longer and don't taper again until you are back to the best you felt when starting treatment. At lower doses a slow taper plan tends to work better for most people and several have been developed by patients.
For comparison (I'm also in Canada), in 2015 I started at 15 mg for a month, then dropped by 1 mg a week until 9 mg. I'd been told to stop tapering if symptoms recurred. At 9 they did but I didn't know if I could increase back to 10 or not. I went on line in the middle of a sleepless night, discovered another English forum where I learned I could indeed go back to 10. I did that for a couple of weeks and afterwards tapered only by using a slow taper method. I was at 3 mg by the end of the first year - and 1.5 after another year, but since then have been mostly (not always) at about 2 or 2.5. Currently at 2.
Good to hear.
But agree with HeronNS the recommended drop from 20mg to 12.5mg in one step is too much. Even after high start and 2weeks at 20mg, stepping down to 17.5-15 for 7-10 days then 12.5mg remaining period might be too quick.
If it is, you’ll have jumped from one extreme to the other.
Just monitor things -and if you get problems please call Rheumy again.
Yeah - I agree with DL & others dropped easily from 20 to 15 then 12.5, 10 then VERY slowly x
That's the other extreme - for many a drop to 12,5mg that quickly just won't work. Recommendations say 20/15/12.5 and some can't manage 20/15 and need 17.5 in between. So when you do drop, be wary and don't try to tough it out.
hello, I was diagnosed at 69 with PMR. By the time I visited my rheumatologist I was really in a lot of pain….couldn’t put socks on ,lift my coffee mug or get off the couch without assistance. My initial dose was 30 mg prednisone for 2 weeks, then 20 for 2 ,then 10 for 2 then 5 for 2 weeks. I am currently at 2.5 and attempting to taper slowly. Best of Luck to you.
That taper seems awfully fast. Do you currently have any symptoms? Are they trying to get you off pred fast for some reason? The median length of time before true remission is about 6 years, although some do recover within a couple of years or even less, and some take longer. Unfortunately pred is not a cure, all it can do for us is relieve the symptoms until PMR itself decides to go away.
my pmr symptoms are close to 2 years now. Initially a previous rheum doc misdiagnosed me with rheumatoid arthritis. Thankfully current rheum dr is excellent. She told me that I will know where to be as I taper slowly with respect to prednisone dose. Right now at 2.5 mg daily
So how are you? I still remember with a shudder those days when even getting out of bed was a slow four-step process. Once it took me half an hour to get up from the floor after I'd done my back exercises.... Even the teenager next door remarked to her mother after seeing me struggle up my front steps that Mrs ___ must have really bad arthritis! After many months of this suffering prednisone truly was a miracle, but I didn't get to 2.5 until after more than a year of tapering.
Whoa nellie. I would take 20 per day until you feel more normal.
I suspect you have this sorted but just Incase I started with 40mg but had to bump to 50mg before relief I am younger than their typical PMR patient, bigger 6ft 1” heavier 270lbs and also had painful symptoms unable to walk etc.etc. I wonder if I had been started at only 12-15mg I likely would not have received relief and would still be looking for what was causing my symptoms my rheumatologist is now seeing 5 younger males who’s symptoms are a bit stubborn and have required higher than normal amounts of prednisone so methotrexate had also been added all had PMR symptoms begin after vaccination… best of luck to you
Interesting about the possible vaccination link. I had my Covid booster about 2 weeks before symptoms started. So sorry to hear about your rough path, and am happy you’re finally getting through it. I’ve been taking 20 mg prednisone for 9 days now. Neck pain persists, but hip issues are so much improved that I’ve been able to walk 7k steps daily- GREAT success since I could barely get out of bed before. I also find myself grumpy, blue. Luckily I’ll get in to see the rheumy next week due to a cancellation.
I assume it’s best to be on as low a dose as possible, being able to function reasonably well? I suspect that if I increased the dosage I’d get neck relief, but I think the idea is to be as low dose as reasonably possible, even if some manageable symptoms persist - am I right in this view? Thank you!
Only if the symptoms aren't increasing - whatever you manage at the starting dose is your guide, you should never feel worse at the end of a taper step than you did at the start although at lower doses things like osteoarthritis may reappear.
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