Saw my doctor today and he wants to keep me at 20mg for one year, and then start to reduce. I was diagnosed with PMR on August 11, and put on 50mg for 1 week and then reduced to 20mg. From his experience he says that staying at 20mg for one year is better than trying to reduce to fast and then having to go back up. He has had success with other patients in the past, so hopefully it will work for me.
Gil
Hi
20mg for 1 year does seem a lot to me
One way of managing PMR is staying on 10 mg for a year and is recommended by some rheumatologist ;
Experts will be along to give you more info
God luck
Rose
Hi I'm no expert but from what I've learned on here your GP sounds unusual in wanting to keep you on a higher dose. Their priority seems to usually be to reduce as soon as possible! However he does seem to be on the high side. I think 15 is a usual start for PMR and was for me. I've used the slow tapering method as recommended by PMRPRO and am just coming down to 10 after 6 months. There are various reduction approaches but your starting point seems quite high. I'm sure others will be along soon with their expert advice. Good luck with it all.
Hi I have been told to slowly reduce to 7.5 and possibly stay on that but we have to do what your doc thinks best
Although I am getting concerned as who do we go along with as I'm finding different docs have different ideas has anyone come across this if so what is your advice please it is worrying
Yes Rusty, it is quite a problem. Unfortunately this isn't a condition that has a set treatment plan. The docs have to be prepared to vary the plan according to the individual patient and many of them are not able or willing to do this. That's where these forums come in. There is so much more experience to be found here than in most doctor's surgeries. We simply have to be our own advocates, read and learn as much as possible so that we can contribute to our care.
There are guidelines for the management of PMR and the most recent ones suggest starting with a dose between 12.5mmg and 25mg - using the lowest dose that works (no suggestion how you should establish that mind!).
rheumatology.org/Portals/0/...
Then you should reduce slowly:
"Recommendation 4: (PICO 6) The panel strongly
recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events."
Experience over a period of 7 years on 3 different PMR/GCA forums has suggested to us that a slow reduction in the smallest steps possible works best to avoid the flares that have always been common using the approaches commonly used by most doctors. One paper (Quick and Kirwan) provides a reduction scheme where they reduce from 15mg in 2x 2.5mg steps, remaining at the doses for 6 weeks and then keep patients at 10mg for a year. They found that that reduced the rate of flares from the usual 3 in 5 to 1 in 5.
Here on the forums, several patients experimented with their reductions in the light of other patient's experiences. The result has been what has been called the "Dead slow and nearly stop" or "Tortoise and Hare" approach, which has been successful for dozens of people in reducing to lower doses than ever before. It is currently being used in a clinical study in the north of England. For almost everyone the first flare has been when they have reached the lowest dose that manages their symptoms - the end point being aimed for. For many they have been able to get to below 5mg before that happens. At that point, the slow reduction also encourages the return of adrenal function. Before that point the slow reduction has avoided the steroid withdrawal discomfort which has previously been a problem and which caused confusion as to whether the return of pain was steroid withdrawal rheumatism or a flare of PMR. And into the bargain, the small steps used have meant the end point was identified far more accurately, usually to within 1/2mg.
There are a couple of versions doing the rounds, this is the one I worked out and which is being used in the study:
healthunlocked.com/pmrgcauk...
Thank you, PMRpro
One thing that rarely gets mentioned here is the possible effect of Pred on eye pressure. I have had Glaucoma for a few years, with damage to one eye, and when I developed PMR 20 months ago my GP knew less about it than what I had already found on the Internet. So I was left to find out the risks myself. The damage to my eye got a lot worse, I will never know if that is due to the Pred but it might be - one particular ophthalmologist I saw neglected to take it into account. I am now dealing with recovery from a Trabeculectomy but will never regain the half of the eye I have "lost". So... Please everyone get your eyes checked more regularly than usual, particularly pressure and field of view, and make sure you mention the Prednisolone you take. I am really trying hard to get off it but know I have to go very slowly, now down to 6mg. Eye pressure has to be taken into account when considering the swings and roundabouts of our treatment.
My pressure is raised too because of steroids. I had laser surgery as I had acute glaucoma. Also amytriptyline causes raised pressure which my Dr didn't know about. I always check as it seems Drs don't know as much as we would hope.
Yes, I had higher eye pressure as well. It was nearly to glaucoma level* when I was examined, about six months after starting pred, (my idea, not my GPs) and told to come back in 4 months for a recheck. At that point with lower pred dose pressure nearly back to normal, but I have wondered if it was higher for a while. Fortunately it seems not to have gone high enough for long enough to cause damage.
*I've since learned that some eye doctors would have treated me at the reading I had at that first check.
My pressures became raised after1 1/2 years on steroids. Had drops in one eye for 4 months, as pressure higher in one than the other, with practically no difference. Consultant says the pressures will probably stay as they are till off steroids as drops didn't help reduce pressure. Just on 6 month checks and with Optician in between
Seems a bit excessive - most people do well by using the very slow reduction approach - then you don't cause flares that result in having to go back up. And it reduces the total load of pred which is the long term goal.
I've not met any rheumies who'd support that approach.
Good luck Gil I was on 20mg for 11 months and then did a quick wean due to teeth problems it can back with a vengeance. I have just started again at 10mg but still a little achy
Ah now your teeth problems make more sense Jevuki. 20 mg for 11 months is a huge amount of Prednisolone. No wonder there were side effects.
Totally agree - There are no guidelines anywhere that recommend that high a dose for so long for PMR. GCA is a very different matter - if vision is at risk then you need a lot whatever it might do. But 50mg for PMR and then a year at 20mg???? not necessary at all.
I am leaving November 1 for 6 months and won't see my doctor until next May. If and when I start feeling better, I will start to reduce on my own. I have 5mg tablets so I was thinking 17.5mg, 15mg, 12.5mg and then 10mg. Right now at 20mg I still have a hard time coping, but I don't want to go any higher. Does that make any sense to you? While I was taking 22.5mg, I would take 15mg in the morning and 7.5 before bed, and this seemed to work better. My doctor feels that it's better to take it all in the morning. It's been 3 days since I started this, and a lot of the old symptoms have come back.
Again appreciate your advice,
Gil
Theoretically yes it is better to take it all at once in the morning - if it doesn't work for you then it isn't! The idea is that a single dose reduces the side effects, especially on the adrenal gland function. However, that is more for being on a short course of pred, we are on it for months, years - there is going to be adrenal suppression whatever you do and so the best way is the way that works best for you.
The anti-inflammatory effect of pred lasts for 12 to 36 hours - it will be fine taking a single dose if you are a 24-36 hour person. It won't if you are a 12-18 hour person.
And to be honest - don't plan your reductions, it just leads to disappointment when it doesn't work. Nor would I go at 2.5mg at a time - 1mg (or as near as you can get) would be gentler on your body and avoid not knowing whether the pain returning is a flare of steroid withdrawal rheumatism. Have a look at this if you haven't already done so:
healthunlocked.com/pmrgcauk...
The trouble with starting on 50mg is that most things would respond some to that high a dose. PMR is felt to be characteristic in responding to a dose around 20mg - if it doesn't then another diagnosis should be considered. LORA, for example, can present identically.
And if you are struggling at 20mg - don't reduce yet. You'll probably struggle more at a lower dose.
Thanks Sheilamac that is why I am now only taking 10mg I don't feel as good but think once it builds up it will get better then I will try to wean down
I do hope so Jevuki! I was so upset to hear about your teeth. I would be devastated too. Now however, I am not blaming the Prednisolone but the Prescriber!! Oh My goodness! We have enough problems with this illness without that!
Try to rest as much as possible and let the 10mg get a chance to mop up the inflammation. Good Luck!
Thank you
Do you have GCA as well as PMR? 50mg is more like the starting dose for GCA not PMR. If not, then taking 20mg for a year means you have a huge total load of Prednisolone in just over a year. I'd be concerned about the side effects.
There is no need to reduce fast. He/she needs to read up on the Dead Slow Nearly Stop method which works for the majority of people. This would cut down on the total amount of Steroid you take during this illness.
Hi,
As others have said 20mg for a year does seem excessive for PMR.
With regard to other responses regarding the onset of glaucoma on higher doses of Pred, you should be seeing your optician regularly if you have been diagnosed with GCA. Even if you haven't, as you are going to be on 20mg for a long it might be wise to.
One of the side effects listed for Pred is glaucoma so maybe we should take it upon ourselves to request an appointment even if the doctor doesn't mention it. We shouldn't expect our GPs to know every side effect of every tablet they prescribe - we have to take some responsibility.
My advise would be to anyone, if you are on highish doses of Pred, after a few months request an eye test specifying you are concerned about glaucoma - even if you have to pay for it.
If glaucoma is caught early enough it can be treated, mine was discovered when I was on 20mg (a year after treatment started at much higher doses) but reduced as Pred reduced and it was back to normal once I got down to 6mg - fortunately no extra treatment required, just monitoring.
At one time everyone who was put on pred was supposed to get annual sight checks on the NHS - because of the pressures problem they were to be treated the same as relatives of established glaucoma sufferers.
Don't ask...
Yes unfortunately our NHS is grinding to a halt! And it's all the "baby boomers" fault - we've spent all the money and lived too long! Wonder who put the money in, in the first place! Ho hum! Whinge over.
Have you seen the BBC report yesterday/today? Not just the doctor's strike stops ops. And emergencies have to come first - so routine stuff (one assumes) then end up as emergencies.
Just as OH went to Durham they built a new hospital. Using PFI (for everything, not just to build it: it cost him £450 to have an electric socket in his department replaced for example! And they had fewer beds and fewer parking spaces. Because you'd have everything done as a day patient and not need the beds. And you were to use public transport to get to the hospital. When you are ill or visiting your friend/husband/wife so the 1 hour visit would take 3 hours to get to. There weren't even enough parking spaces for staff - anyone who had to go to another hospital had no guarantee they could park when they got back and if you started/finished at 6am or midnight there were no busses.
Don't get me started on hospital parking! What a nightmare - wherever you go!
At our local hospital, which is medium sized but covers a mainly rural area, they've stopped the buses dropping off at the main entrance because of cars parked in the way (all BB holders incidentally!). The buses now stop on the main road which means that anyone, whether in good or poor health, has to struggle to the various departments.
The motto seems to be, if you're walking wounded - tough!
Exactly!!!!
The Durham hospital covered a mainly rural area - whoever has these stupid ideas has obviously never lived in the country! Or are so rich they can take a taxi...
We manage to keep 3 "families" off the streets in safe and acceptable private rented accommodation (I'd live in any of them). All our properties together are worth less than the one house the SIL lives in - 2 of them in a 5-bed detached. But we won't go there.
And bank of mum and dad has sorted a lot of problems in the last few years...
Actually the pred. may cause raised eye pressure which is called ocular hypertension. This is usually treatable with eye drops and is therefore reversable. It is this raised pressure which, if undetected and thus untreated, causes Glaucoma which is the loss of vision due to permanent damage to the Optic Nerve. So the word Glaucoma should only be used when there is permanent loss of vision due to untreated ocular hypertension. There is a lot of misuse of the word Glaucoma so I make no apologies for being pedantic on this point.
Ok point taken - thanks for clarification. Pred paperwork does say under side effects 'abnormally high pressure in the eye (glaucoma)' - I checked before writing.
As for eye problems caused by GCA - I have the T-shirt, unfortunately.
You'd better tell the RNIB that then!
"Glaucoma is an eye condition where your optic nerve is damaged by the pressure of the fluid inside your eye. Most types of glaucoma have no symptoms, so a regular eye test is the only way to know you have the condition. Treatment with drops can often prevent glaucoma causing sight loss."
What I'm getting at - you are unlikely to notice yourself that you have Glaucoma until the permanent damage is quite bad, so get tested! The first I knew was when a Field of Vision test done when I needed new glasses showed that I had lost some peripheral vision. It deteriorated further last year quite quickly. It is quite common to have ocular hypertension (raised eye pressure) for years without any damage if it is treated. Our daughter has it, in her early 40's. That sentence ought really to read "prevent glaucoma causing noticeable sight loss!"
Did see an optician, and she wants to see me every 6 months now.
Thank you
Good, as we all know, some of us too much, sight cannot be messed about with!
Your treatment for the onset of PMR is somewhat atypical..... as you will soon see if you review many of the other PMR medical histories on this website. My own physician started me with 30 milligrams which I felt was atypically high compared to other patient histories on this chat room site.... 15 to 20 milligrams may have been enough to cut my severe symptoms of pelvic girdle pain and malaise. Once I became asymptomatic my physician kept me on the same dose for approximately a week or two and then repeated my sed rate aiming to keeping it below 10. there are many different tapering schedules all of which lead to approximately 7.5 to 10 milligrams of prednisone... Beyond this point tapering becomes a bit more tricky since you are dealing with a physiologic dose range... my definition of a physiologic dose range is the prednisone dose that you need to carry on normal bodily functions when your own adrenal glands have sort of been "put to sleep"by the supra physiologic higher dose of prednisone that you started out with... the longer you are on prednisone the trickier it gets to "wake up"your adrenal glands.... unless U remain symptomatic with regard to your PMR condition I would never allow anyone to put me on 20 milligrams of Prednisone for a year ...since the high dose prednisone carries its own side effects which you can look up on the internet.. the bottom line is that U do not want to be made cushinoid when U don't have to be... I believe the latter is more dangerous than the original PMR for which you"re being treated for.... as you probably know long-term prednisone can make you prediabetic if not diabetic, hypertensive , Etc. There are multiple ways to determine your course for prednisone treatment and or tapering... to repeat the sed rate is very useful once your PMR symptoms have subsided.... I fail to understand how any physician can predict your need for 20 milligrams of Prednisone for an entire year before he has any input as to how you will respond to any given dose.... in this regard I think that prednisone is a very dangerous drug when you don't need it and of course it's a lifesaver when you do need it.. the bottom line is to take as little as you need for as short a period of time as you need.. this requires trial and error and a more reasonable tapering course than you have been given.... you have not mentioned whether your physician is a rheumatologist or an endocrinologist.
Is 20mg a lot?
12 days since upping Pred . Now on 20mg and still hurting with PMR symptoms 
OMEPRAZOLE 20mg
One year
Should I continue on 20mg pred?
