Are there any typical tapering schedules?
Worried (very). Diagnosed in June and initial 30mg 'cured' everything and more. Tapered down to 5mg by dropping 2.5 to 5mg per month . November had a relapse - body more or less ok but severe pain in fingers and wrists so went to see doctor - a DIFFERENT doc
Initial dose of 60mg and tapered down to 5mg in four weeks!!!! 'Cured' finger pain but now it's back. Have I got a bad doc? Don't know what to do - worried.
Sorry - dropping by 2.5 / 5mg per WEEK ( not month)
In my opinion, your starting dosages were atypical in that they began too high (unless GCA is suspected) and your tapers are far too rapid and steep.
PMR and GCA are not "cured" by pred. They symptoms are treated with pred. The aim of the treatment is to control the inflammation that leads to the pain, and to taper slowly to find the right level that keeps you functional and comfortable until the condition "burns itself out".
At this writing, there is no cure for PMR/GCA, but it does go into remission or completely resolves over 2-6+ YEARS, not weeks and not months.
You need to find a rheumatologist who will listen to you, and do some research on this site to become knowledgeable about the condition, and about living well with the condition.
PS: Stop worrying, which I know is easier said than done. But worrying won't change anything except to elevate your stress levels, which will increase inflammation, which will make everything hurt more.
Try to relax and get deep rest, eat a healthy diet going light on the carbs and processed foods, and get gentle exercise with the emphasis on keeping your range of motion.
Learn to enjoy a life that's a bit slower and calmer, shedding obligations that bring you no pleasure and indulging in good books, good music and good movies.
The good news is, we get better, but only with care, rest and time.
Best to you and yours for 2020.
These two need retraining!!
Have you neen diagnosed with pmr or gca or both? Thats far to fast a taper for anyone to be making. We usually reccomend no more than 10% each drop. I think you need to see a doctor who actually knows something about pmr and gca. Have you been offered an appt with a rheumy because both of these doctors are not helping your recovery. Others will be along with taper plans which should help and you should be able to print them out and take with you to show these idiots the proper way of tapering. Try not to worry as this doesnt help your pmr/gca. YBB
Hi,
Couple of points.
30mg is a high starting dose for PMR - and despite the very good response, nothing is “cured” - PNR doesn’t work like that. Pred only controls the inflammation caused by the underlying disease - it does nothing for the PMR itself.
Tapering that quickly, no wonder you had a relapse. You are not relentlessly reducing to zero, you are trying to find the lowest dose that controls your symptoms, and to do that it needs to be a more measured reduction.
Why bumped up to 60mg? that’s usually the dose for GCA with sight issues.
Sounds as if neither doctor has much idea to be honest.
Guidelines for PMR tapering schedule -
The suggested regimen is: However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
Daily prednisolone 15 mg for 3 weeks
Then 12.5 mg for 3 weeks
Then 10 mg for 4–6 weeks
Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)
**********
Corticosteroid Therapy for Giant Cell Arteritis
Starting dosage
Prednisone in a dosage of 40 to 60 mg per day until the ESR is normal and the patient is asymptomatic
Dosage reduction
Decrease the dosage by 2.5 to 5 mg per day every two weeks to a dosage of 20 mg per day; then decrease the dosage by 10 percent every 2 weeks to a dosage of 10 mg per day; then decrease the dosage by 1 mg per day every 4 weeks.
or
Decrease the dosage by 10 percent every 2 weeks to a dosage of 10 mg per day; then decrease the dosage by 1 mg per day every 4 weeks.
Monitoring
Monitor the patient for symptom recurrence throughout the steroid taper; monitor the ESR every 4 weeks for 2 to 3 months, then every 8 to 12 weeks until 12 to 18 months after the cessation of therapy.
Might be worth you having a look at this as well -
healthunlocked.com/pmrgcauk...
PS - although tapering plans are in the guidelines, doesn’t healthunlocked.com/pmrgcauk...
Just because plans are in guidelines doesn’t mean they always work, in fact for most people they are too quick!
The taper schedule you were advised to follow is typical where a patient has something like a lung condition or severe skin problem, which will benefit from a short sharp burst of steroids, tapering down quickly to zero.
The taper for PMR needs to be much slower otherwise the PMR inflammation will break through and symptoms will return. It is really good news that the pain went away when you were on 30 mg. But because you have reduced so quickly [the perceived wisdom is only 10% reduction in dose MONTHLY not weekly] you have overshot the dose which keeps the PMR inflammation contained.
You really need to see a doctor who knows how to treat PMR, and that means a start dose of between 15mg and 25mg, tapering monthly by only 10% with each drop. Do you know at what dose the pain came back again? As that might be a good place to start. BUT you really need to find a more knowledgeable doctor. Where do you live?
Someone will be along very soon with some more detailed information and some suggested tapering schedules.
You might want to read Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis a survival guide, as it help you to understand what is going on.
I am not surprised you are worried. But you have reached a good forum to find information. Stick with us!
On this page, right hand side, pinned posts. Dead Slow and Nearly Stop reduction plan.
DSNS - take a look.
Hello there, I’ll just add my voice by agreeing with others whole heartedly. No idea why you were put up to 60mg unless they though you had GCA but if they did it was still not managed properly. For an example my GCA started on 60mg took me 15 months to get to 5mg and that was pretty good going. There are some doctors who have the attitude of hit it hard or go home with PMR as if the Pred blasts the disease out of the system before getting people off the Pred asap. It may be that you have to be like others who have to go to their docs with printouts of guidelines you can point to like this
academic.oup.com/rheumatolo...
and even in this it says there no evidence of the ideal reduction plan so it must “be flexible”.
Here’s more
Not sure I'd say bad - more like totally uninformed about PMR and the use of pred to manage it.
You have been told to go about it the wrong way. PMR is a chronic illness - it isn't a case of taking a course of pred and stopping. You start with a dose that is going to be plenty, usually 15-20mg but some people need a bit more, and then you reduce SLOWLY (10% of the current dose max per month, so probably not more than 2.5mg per month, below 20mg less) until you find the lowest dose that gives the same result as the starting dose did.
healthunlocked.com/pmrgcauk...
is one of the slow reductions we support using - tried and tested by patients, the people who can really assess if it works - and in use in a clinical study in the north of England.
THANKS everybody - many thanks. It would seem I've got dodgy doctors. Someone mentioned did I have lung conditions, skin issues.........Until PMG hit me i was a very successful competitive (boasting!) even at the age of 72 with no health issues.
Next stop is to find a knowledgable doc I can trust
I am no expert as others on forum are, however, a year ago I started on 40mg and after 3 days to 20mg. My GP has basically left it up to me to manage. Through the sage advice here, I have learnt to go slowly. I got down to 4 several months ago, but had to go back up to 10 for a couple of days. I am now down to 5mg again,. I am doing OK after 3 weeks on 5 and am planning to go down to 4.5mg soon. May even try to do alternate days. I still become very tired in the afternoon, but have learnt to manage that in various ways. We are all different and many of us have other health problem. Mine are osteoarthritis and an aging body, so we have to take other ailments into account. Do listen to the experienced advice on this forum. I have found it to be very helpful. Good Luck ! 
I’m confused, was your initial dose in June 30mg or 60mg? I was given 80mg for 2 days at the ER, and immediately upon release put on 60mg/d. I’m now transitioning from 12mg/d to 10mg/d again since a relapse a few months ago now using PL Simple Taper from this site. I’m getting a little push-back from my Rheumy but I don’t care, this Taper is working well for “me”.
From what was done with me AND what I’ve read, what the trend or recommendation is in the US is from 60mg to 30mg the reduction by 10mg every 2 wks, then by 5 mg every 2wks, to 20mg, then by 2.5mg every 3 wks to 10mg, then by 1 mg every 4 weeks. With the Taper, it can be not more than a 10% reduction from old dose to new dose once reach 10mg/d if not sooner.
There trend is a sharp cut-off at each reduction, not a Taper like the ones you’ll read here where it is a smooth slow transition from one dosage to the next.
The goal here is to identify the minimum dose needed to minimize or eliminate your symptoms without overshooting it and staying there for awhile before re-initiating the taper again. If your doctor had you following what I posted above, then s/he is following the guideline. But their goal is to get you off of the Pred ASAP because they are paranoid about loss of bone density which according to NIH risk increases if dosage is above 10mg/d for more than 3 months. Note I wrote “risk”. By now your Dr should have had a DXA scan done to get a benchmark. They prefer it to not be less than a negative 1 (-1); if it drops to a -2 they’re going to try to convince you to take a medication than could have nasty side affects. Drop to -2.5 and you are now diagnosed as having Osteoporosis.
Like I’ve already seen here in a reply, the Pred did not cure the disease(PMR) it is reducing the inflammation thus relieving the pain. It may last for years...or just “go away” after a period of time (1-2 Years), everyone is different.
What “You” can do to help reduce flairs is manage your activity (walking is a good exercise) and any exercise (whether formal or via “chores”) needs to be in moderation and not intense if possible. If one day you did a bit much, take it easy the next day or 2. Talk to your doctor about taking supplements (what, when, how...) to help reduce or eliminate loss of bone density. They may put you on Calcium (I recommend Calcium citrate over Calcium carbonate), Vitamin D3, and Vitamin K2 as trans-Menaquinone-7. The D3 aids in getting the Calcium into the bloodstream and the specified K2 aids in preventing the calcium in the bloodstream from depositing itself to the walls of the vessels and directing it to the bone. Read up, take an active role with your doctors, remember it’s your body and don’t be timid about getting a second or third opinion. I’ve gone so far as to download publications to support my position.
Best of luck.
Poscript clarification: I didn’t mean to imply the starting dose is 60mg, what I meant to say is IF your starting dose is that high, that is the reduction schedule. If diagnosed from the start as having PMR with no complications the starting dose typically is between 17.5mg - 25mg/d, once a day in the morning following the reduction schedule I indicated.
BTW, since my one an only flare from June ‘19 to now. The doctor had me split the dose in half and take it 2x/d about 12 hrs apart. When I get up in the morning and before going to bed. I’ve not felt any side-effects since that and taper related to dosage change or possibly overshoot the “ideal” Pred dose at my current stage of the disease.
It seems that tapering is extremely individual....nerve racking, scary, anxiety inducing but individual. I have GCA and presented with painless blindness in my left eye in August, 2019. I was started on 120mg of Prednisone per day for 2 months to try to save my right eye. I was then dropped to 80 and as we tapered when we got to 40mg per day I lost some vision in my right eye. I have other medical conditions and the steroids were counteracting those medications as well. I believe it was October I started on 64 mg per day along with Actemera shots, first every other week, then weekly.
My rheumatologist told me we had to start the taper the second week in December....which I wanted to put off until January because I will see my grandchildren tomorrow (from Canada) and I was so afraid I would lose more vision, but he said we MUST taper. So I went from 64, to 48mg for a week, then 32 and starting yesterday 24mg per day until I see him again in January. I was so anxious....and that is about when I found this group which saved my sanity! My vision in the right eye is blurry....but I will see them and no serious issues, little sorer here and there, some jaw discomfort but no bad head pain.
Not only do we have eachother's support but I've read how many ups and downs you all have had and have accepted that as part of the illness. I know if I go down...I can get up again. Before this decision was made about my taper there was a consult with two other rheumatologists who specialize in GCA...although I think you folks have a huge leg up on the states as far as awareness.
I'm a positive person....and your finger pain may vary in degrees without it being cause for fear. That is the gift this group has given me....taken away my fear of the unknown and worrying.
I wish you all the best...if you are 'sure' about your doctor, can you get another. I have a couple of docs I'm not in love with....but I love my rhuemy~!
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