I was until two weeks ago a healthy active 60 year old women who suddenly developed PMR and luckily went straight to a practice nurse and two days later the blood results confirmed the diagnosis. The GP wants me to start pred at 30mg and see me in a week's time. Looking through your blog posts this seems much higher than most people start on.
He also said that in 50% of cases PMR blows over in a couple of months - a very different prognosis from that of your website. I wonder if he is trying to keep my spirits up. He also said that exercise and diet made no difference. My symptoms seem very severe, much of the day lying flat in bed with hot water bottles under my back and knees. I try to get out each day for a walk. Sitting is painful, pottering around the house easier. I can cook which is nice.
I told the doctor I needed time to think over taking steroids as it has all happened so suddenly. I wonder how often starting doses are as high as 30mg and how the decision gets made.
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Cela
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Morning cela sorry to hear you have come to join us
As for 30mg that to me isint to high a starter I might be wrong but I went on to 60 mg I am now down to 7and a half as from last week but I am in a awful lot of pain now needing help as to wether to go and get some more I’m going back to where I started and no like it so I hope your doctor sorts you out as that pain you are in is horrible so I hope to hear you will soon be sorted out
Hello, Cela you are a fellow traveller now, sorry for you. I am a Year ahead and my gp prescribed 30 Mg pred for 4 weeks. I was so confused and did it, would not do that again. Once I learned more about this disease I asked him why he answered “ to kick pmr in the ASS” hardly scientific is it. It helped me a lot to read almost everything on the subject for example the excellent book written by Kate Gilbert.
30mg is a high dose for PMR as you say. Perhaps his rationale is the same as Zofitmogelijk’s doctor- but if so he doesn’t know much about PMR. Yes you do need a higher dose to start with to sweep up the existing inflammation, and then you decrease to find the right amount to control the further inflammation which is produced on a daily basis.
You don’t kick PMR in the ass, it doesn’t work that way. PMR has its own agenda -it comes, it stays as long as it wants, and then it goes - all you can do is control the inflammation caused by the underlying illness.
And it’s not over in a couple of months! He needs to read up on it! 2 years minimum!
You might like to read attached, and then maybe educate him at your next appointment
Hello Celia sorry to have to welcome you to the club no one wanted to join. I too started at 30mgs of Pred. Steroids are no big deal you will not be on that dose for very long just until your symptoms substantially improve. It is the only drug that works for PMR you also need to get plenty of rest. Yes, there are lots of side effects but I don't know anyone who has them all! I love the idea that PMR "blows over in a couple of months" I wish! I have had PMR and it's nasty little friend GCA for 19months but have now tapered the pred down to 9mg and am more or less pain and stiffness free.
There will be our "aunties" along soon with their experience and advice and the ability to put links on their iPad!
You can always start at 15 or 20 mg. See if it does the trick. If it does, you've saved yourself some time tapering, if it doesn't, increase to the 30mg he prescribed. As the others said, bring him, or tell him about some of the resources out here. I did it by telling the doctor that I had read...and what else did she think I should read? This way I wasn't hinting that she needed educating but gave her some resources to look at. Also, more importantly letting her know that I wasn't going to just treat everything she said as if it were straight from God.
I do agree with you. Yes 30 mgs would make you feel wonderful, getting off it again would not. My own pattern was 20 mgs for 6 weeks then a steady taper until 10 mgs then dead slow nearly stop taper after 10 mgs. I am currently resting at 7 mgs ( resting being the operative word, can't keep my eyes open). I am 20 months into the diagnosed disease.
Poor you! I do remember that awful acute beginning that you are in now.
I am afraid your doctor, although well meant, is simply wrong about the duration of PMR. It is far more likely to be 2-4 years. Managed carefully though, it needn't feel like a disability. This means pacing your activities, taking gentle walks and plenty of rest. Avoid stress whenever you can. Pred is our only drug and hair raising as the side effects sound, it really will be your best friend and enable you to have some semblance of a normal life.
You will need to support your bones with Calcium and vit D ( don't agree to Biophosphonates unless a DEXA scan ( bone density) shows that you really need them. Have your eyes checked regularly and cut the carbs. That takes care of major side effects. We have remedies for the lesser ones on here.
Stick with us. This forum has transformed my experience of PMR for the better - totally.
Welcome to the club that you didn't choose to join!
Hi Cela. Re diet and exercise. Diet is important because cutting your carb intake, particularly grains and sugar, will make a big difference in how your body responds to pred, whether you start packing on weight or not. And this will also guard against raised blood sugar levels, which pred can cause. Many of us think that consuming some of the so-called anti-inflammatory foods and spices is helpful to a small degree. Exercise depends somewhat on what your previous activity level was like. If you were athletic it will be easier to pick up again, probably, but not in a competitive kind of way (not trying to do your "best"). The key really is pacing. Activity, whether physical, social, emotional or intellectual, needs to be balanced with a period of rest. PMR is a serious systemic disease and needs to be treated with respect. We may feel fantastic when we start pred because we feel so much better than before pred, but we must be careful not to overdo things, or let others believe we are completely recovered and become more demanding of us than is good for us.
Hi Cela, if you had a severe infection, would you need to “think “ about taking antibiotics”? I would hope not!
It sounds pretty clear that you are miserable, “lying in bed with a hot water bottle, and sitting is painful”.
You are fortunate in that it sounds like you quickly have an accurate diagnosis, and have been prescribed the only medication known to treat this disorder. As you probably have also read, PMR is the little sister to a much more severe disorder that can cost your vision. Take a look at some of the archive posts on GCA.
All that said, I understand your reluctance to use prednisone. I felt the same way....however...after the first dose, my pain eased and I could fasten my bra without pain...! Prednisone became my new best friend!
I suggest you try the pred, maybe 20 mgs if you feel more comfortable with that dose...not much harm in trying, as long as you do not have GCA.
My disclaimer here...I am not a medical professional, just a fellow traveler on this journey...I have been using prednisone for 4 years...and hopeful that my PMR is near extinguished. Time will tell.
Until a few years ago the starting dose was commonly 30mg until it occurred to them MAYBE not everyone needed that much and perhaps it was just adding to the pred effects. So they dropped it to 15mg. In the meantime they have reaslised that 15mg isn't enough for some people and the most recent guidelines say "the lowest effective dose in the range 12.5-25mg, exceptionally 30mg but never above".
Your doctor obviously doesn't know ANYTHING about PMR except POSSIBLY the symptoms! And his decisions seems purely arbitrary.
If you want to be out of pain and it is PMR (and sorry, Dr GP, symptoms plus raised ESR/CRP are not 100% confirmation, just make it more likely) then you should try 15mg. If in a week that hasn't given a good result, try 20mg. Some pain will respond quickly, other things such as bursitis and tendonitis/synovitis may take longer to go altogether. My hip bursitis took a few months to go altogether on oral pred, when it flares now I usually get steroid injections which work much faster.
Gentle exercise DOES help you mobilise - and you can even manage the symptoms relatively well with exercise without pred if it isn't TOO bad - I did for 5 years (not my choice though). After an aquafit class in the morning I was able to move enough to do Pilates and yoga, both heavily adapted for me - and as a result I could function fairly well despite the pain. I couldn't without it. And adding anti-inflammatory foods (e.g. oily fish, turmeric, garlic) to your diet and taking out sugar and simple carbs (very pro-inflammatory) will also help. They won't replace pred though.
"I wonder if he is trying to keep my spirits up" - well possibly and that is the excuse doctors have given me. But most people who are told such fictions end up finding one or other of the forums in tears when they haven't been able to reduce in line with their doctor's desires, never mind stop their pred, in 12 or 18 months. And it is the "experts" on the forums who have walked the walk who have to clear up the mess.
There is PROBABLY a reactive form of PMR that does go fairly quickly. But only about 25% of patients get off pred in under 2 years and they appear to be at a higher risk of relapse. Half of us take up to 4 to 6 years. The rest of us - longer. The high speed version seems to be purely English-speaking: the standard German rheumatology textbook says an average of 5 years - which is far more realistic. And the local rheumatologists where I live (northern Italy and German-trained) just laugh at the idea of 2 years for PMR.
It'll be fine - try a moderate dose and see how you get on. You can stop it immediately after up to a couple of weeks, you can taper down to zero from 15mg in 6 weeks quite safely. Your PMR won't have gone away in that time but starting pred doesn't mean you can't finish with it if you choose to.
This forum has been so good for me, many thanks again to everyone who wrote in. I felt last night I could make an informed decision to start the pred so at 2 am I took 10 mg and the pain is gone. Amazing - I'm just left with fatigue and a feeling on unwellness, but at least I can function.
Also helpful I went yesterday to a "singing-for-health class" which began with exercises and then onto singing - simple folk songs from around the world. I suddenly realised towards the end of the class I was out of pain and my whole body had become relaxed. (afternoons though have been my best time of late) I wonder if other people have tried singing
If I am pain free after 10mg of pred do I need a higher dose?
Some reading - because now you are free from pain you will think you can go back to normal - and you shouldn't!! If you do you may get a return of pain and panic - your muscles are still intolerant of acute exercise because the underlying cause of the symptoms is still running in the background and the pred does nothing to that.
If you really are free from pain and stiffness there is no real need to try a higher dose - but don't rush to reduce from 10mg for a few weeks at least Some people are lucky and a low dose works for them. If you don't need more - you won't have to reduce as far either!
I would have thought it is definitely worth trying pred for a few days. If it works you will feel a miracle has happened, if it does not you probably do not have PMR and can stop taking the pred immediately. I agree 30mg is a bit belt and braces so you could always start on a lower dose.
Goodness knows why your doctor thinks it blows over in a couple of months, perhaps he misread it for a couple of years somewhere! Has he ever had a patient with PMR before I wonder.
I live in a large city known to have the best doctors in the USA. My rheumatologist started me on 60 mgs. of prednisone and am now down to 5 mgs. PMR started in October of 2016. I have never had any pain since starting prednisone. I work out at the gym and am very active. (I am 65 years old) I am decreasing prednisone by 1 mg. monthly. I must also mention that my rheumologist also has me on leflunomide. From what i have read on this site, i feel very fortunate to be pain free and very active. Best of luck to you.
I did have a lot of anxiety which is the most common side effect. My family doctor prescribed a low dose of Zoloft which has been very helpful. I just wonder how many co-morbidities some of these people who reply have.
To everyone who has so kindly replied to my posting
how amazing such information can be learnt on this site! thank heavens I have this disease now rather than in an earlier pre-internet age when getting hold of information must have been so much harder.
I'm now reading through other threads and learning so much. I shall go on reading.
many thanks for all the trouble everyone went to to reply to my posting.
Wasn't even pre-internet! Just over 10 years ago there was only one forum, the patient.info one, and no charities in England. There was a charity in Scotland and a support group in East Anglia. Five ladies met on patient.info - and, as they say, the rest is history! The NE of England charity, support groups, website and forum were first and the national group and this forum came later. Now there are 4 charities in the UK and loads of support groups.
Hi Cell, like you my GP prescribed 30mgs starting dose of steroid. However he wanted me to see Rheumy before starting them, since taking them would mask any bloods Rheumy might want to do. I fast tracked with a private Rheumy appointment and was glad I did. Rheumy said starting dose for PMR should be 15mgs. The reaction at this level is a real indicator as to whether it is PMR. He told me I should be operating at 80% of my norm within 3 days and I was. My advice is start at 15mgs - 20mgs and see the effect.
I am a very fit 68-year-old and have been a month on pred, effectively treating myself. In the month before pred, I lost weight and some fitness but kept exercising a few hours most days. My diet has long been singularly prudent.
After a week-1 of trial and error, I settled on 17 mg pred, which only gave 9 hours relief in the late afternoon. By mid week-3 , I hit upon a 16 - 5 split dose (8am - 8pm), which yielded 24 hours of low-level symptoms (shoulder pain) that slowly began to increase (worst at dawn). By mid week-4, a week ago, I increased to a 17 - 7 split and PMR symptoms are now very mild.
I have read that, if you are otherwise healthy, the side effects of pred are insignificant except perhaps for the eyes. Without the pred, I believe the PMR inflammation, itself, will cause damage elsewhere in body but I have yet to verify this. Can anyone help here?
Before PMR, my exercise level was energetic and extreme: high-impact aerobics, badminton, tennis, running, skiing, in-line skating, cycling and gym. In the past fortnight, feeling much better, I have returned to this high level without ill-effects, other than the expected sore muscles that I habitually have anyway.
Goodness knows who said the side effects of pred were insignificant, probably someone who had never taken it. I had fourteen different side effects, but no eye problems, some worse than others, I would not say any were insignificant.
Hi Cella- I have had PMR since January, diagnosed in March (2017), am 59 years old, was put on 20, but realized 15 mg would've been enough. Have had 2 flares, first time in April had to go back up to 15 to knock out inflammation, as PMRPRO said. Second flare in August (when I was at 6mgs) I had to bounce back up to only 8 to be functional (mostly pain free in a.m). The big difference I have found for feeling well are 3 things that have helped me immensely :
1-gluten free diet
2-lots of walking (but NOT carrying heavy loads)
3- Taking anti inflammatory supplements and eating anti inflammatory foods --regularly
You may want to start with simple carb/sugar cutting, as has been mentioned several times here. The thought of Gluten free scared the daylights out of me, but it is not as awful as it sounds, and actually that choice has made a huge difference in how good I feel. But, as others also say "we are all different, and our bodies respond differently " --so , for what it's worth, this has been my journey. All the best to you!
Thank you for this. I've started cutting carbs and no sugar and will think about gluten free' This morning will order an anti inflammatory cookbook.
I think probably starting on 10mg pred might have been optimistic - the pain cam back with vengeance last night so I took 12.5 mg.. Let's see how it goes over the next few days.
Also I want to thank everyone who has helped me so much during the last week. How lucky we are to have this forum!
Yes, this forum has been a life saver for me!!😊 If 12.5 doesn't work, I'd recommend a jump up to 15, and then wait a couple weeks before taper to 14. Allow 2 weeks (at least) for each taper thereafter. Once at 10 again, 1/2 mg tapers over bigger spans of time. It's so hard to do this slow method, but worth it.!! I have advanced osteoporosis, so it's hard for me to accept a lifestyle dependent on pred. 🙁
But as I said , it's much easier with the 3 things I listed in last reply AND I'm much more tuned in to when I'm starting to flare. Best of luck, Cela!
thank you for the kind and useful reply. I'm really sorry about your osteoporosis, I hope it does not confine your life too much - I fear I know little about it.
I saw my doctor a couple of days ago and he said that I should start reducing from 15 mg - though I'd only been on this dose for a few days and so I went down to 14 mg - and 18 hours later was in much pain - so last night took 15 mg again. I was horrified that just reducing 1 mg could take me from a place of no pain to one of not being able to function from pain.
The doctor won't budge from his position that polymyalgia is something that in half the cases just goes away in a few months. When I mentioned this forum he said that people on the forum are only those for whom it does go on to become a long term condition.
which says "Evidence from published cohorts of patients suggests that the dose should then be slowly reduced and that stopping PMR treatment is feasible from two years onwards. Rate of steroid tapering at more than 1 mg/month is a clear predictor of relapse."
It's bad enough when they have the 2 year fixation - when it is months you are in trouble.
So sorry to hear about your pain, Cela, after reducing1 mg. I'd been on 7 mg for first 3 weeks of Nov, then reduced to 6-1/2 and the next day felt like a flare was starting so promptlywent back to 7.
6-1/2 again and no issues whatsoever!!! Still doing really well on 6-1/2 tho blood draw will tell me more on Tuesday It's good you're in tune to your body and jumped back up to 15 when 14 didn't work. Take heart tho, it eventually will work . Adrenal glands have to be ready (as I understand from this blog) before the next taper succeeds. Maybe try 1/2 mg next time you taper(?) just a thought. Agree with PMRpro assessment-- your dr is ill-informedsadly. Is it possible to switch docs?
Hard enough to battle the disease, but then when you have to battle yr doc's advice --only adds to your stress.
The column gets narrower each time someone different replies to the previous post - a particularly stupid aspect of the way this forum nests its posts. Doesn't make sense because suddenly it jumps back to full width as the conversation progresses.
Cela, sorry I'm so late to the party. Wondering how you are doing? If I'd read this post about how soon and quickly your doctor told you to reduce I would have said this is why your medicine didn't seem to work any more. You weren't on enough for long enough. I started at 15 mg and it took three days before I was completely pain free. I stayed at this dose for about 5 weeks before taper was started, I had a pretty uneventful but slow taper (the lower the slower) all the way down to 1.5 (took about two years) when I made a mistake (triggered by my optimistic doctor who had up to that point been sensible) and have had a relatively minor but rather persistent flare. So the secret may simply be to make sure the inflammation is properly controlled at the beginning, and then to taper slowly enough that the body and PMR don't notice the pred is being gradually withdrawn.
But! The acute phase has to deal with more radically, with steroid, and pain management is important so you can move and have a good sleep.
I would do what your doctor recommend for start, but change the lifestyle. Cut out any food your body is not benefiting from. I was just recently reading a study, about cutting out all dairy products, banana, and reduce carbs. Eat healthy protein have less caffeine and if possible avoid stress.
I am consider myself lucky. The painful part lasted for a month, like May 2017.
I am tapering the steroid , down to 3mg in December. Cut out most sugar, alcohol, no need for pain killer since June. My doctor started 5mg in May, had the biopsy for GCA , and it was negative.
I do not have GCA, that explain the low dose of medication. Would have started 30-40mg or more if I did not have the biopsy I was told, to prevent blindness and other problems from the possible GCA.
If you have a choice, have the biopsy of the temporal atrery, so you can have the right diagnosis.
It doesn't help to exclude - at best it can prove 100% it is GCA if it is a positive biopsy. If it is negative all it really means is that they didn't find the signs they were looking for. Which means it wasn't in the bit of artery they looked at. GCA often forms what are called skip lesions - one section of artery has them, the one right next to it doesn't. So it is the symptoms they have to go by. Unfortunately there are even experts who fall into the trap at times.
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