Have been diagnosed with PMR early 2023.I started on 15mg and have been told by GP to reduce to 5mg.
Have taken 15mg for just over two months, reduced to 12.5 for two weeks then to 10 for two weeks, I'm getting some really bad headaches is this too guick or is this normal
Oh dear! You are right this is far too quick. The aim of tapering is to get to the lowest dose that gives you relief from your symptoms - you miss this level if you go too quickly. Also you should never reduce by more than 10% of your dose. Take a look at FAQs on here for more detail about slow and gentle tapers. FAQs appear just below your post. PMR lasts on average 5.9 years. You doctor doesn’t seem well versed in the management of PMR. Some doctors are fixated on the side effects of Pred but it is the only drug that allows us to lead a relatively normal pain free life. It must be used correctly though.
The experts will be along soon but from my own experience yes too quick. A GP at my practice put me on a similar taper from 30 mg down to 10mg then more slowly from 10mg. Between 12.5mg and 10mg things didn't quite go according to his plan and I had to go back to 15mg. Good luck, just listen to your body and the fabulous advice from the experts here
Many thanks for your reply sounds like I might go back to 12.5, the only tablets I've got are 5 or 2.5 think I've got to go back to the GP
Are they enteric coated or plain tablets?
2.5 are coated and the 5 are plane
Why do the do that? The coated take 4 to 5 hours to get into the system, plain only an hour or so if prednisolone. Is there any chance of cutting the 5mg in quarters? That gives you just over 1mg and it can be done with a good cutter.
I have found reducing every four weeks gives you time to ensure that things are OK for the reduction. I found under 10mg reducing by 0.5mg a month worked well for me although some can manage 1mg. Over 10mg some people can manage 2.5mg, I was not one of them!
WE think it is too quick - doctors disagree because they are terrified of pred. WE think you need at least 3 weeks at a new dose to be sure it is still enough and there is very little likelihood at this stage that you will manage on 5mg yet. It takes half of patients about 15 months to get to 5mg - that means half of us need MORE than 15 months, And while 2.5mg at a time is quoted in most of the guidelines, there are many patients who can't cope with it and need to go in smaller steps, often 1mg at a time, for comfort.
What are the headaches like? Where? Any other symptoms besides the PMR? There is always a possibility that your PMR is actually a symptom of GCA, the big sister of PMR, which affects the arteries in the head and headache is a common symptom.
I hope its not GCA ,had my eyes tested a month ago he said they hadn't changed from last year, generally just bad headache and no pain around the temples, some pain with my teeth but the dentist says it's just sensitive teeth
Hallo Spudleyboy,Too fast a reduction....I am in same boat.
Ask your Dr for 5 mg and 1mg tablets. Makes things easier.
Go at your own pace...slowly, slowly so your body can adapt.
I was on 15mg.
Now down to 8.
(A five mg and three ones.)
I take Berberine and chromium....found very helping in curbing appetite,
Should also have calcium as teeth are crumbling but. I eat cheese and have milk and tinned fish and fresh fish.
I am trying to decrease I mg a month....not the two weeks suggested.
Have had dreadful headaches too,unusual for me
And dreadful breast and chest pain etc, which started Feb 2020, well before pmr was diagnosed in Oct 22. This has increased rather than diminished.
Went for mammogram yesterday ... the technician had trouble stopping stomach protruding where it was not wanted.
I hate this extra weight. Now on no carbs , lots of green veg, fruit, fish etc to lose it. Can,t walk alone so cannot exercise much .
Only a cyst, nothing worse and lovely oncologist explained it was all muscle pain not any cancer pain. PmR affects the muscles and joints.
Very knowledgeable chap.
Just telling you all this because it's all relevant ......all the pain we get can be explained.
So taper as slowly as is right for you. It is your body.
Take calcium, vitamins d3 with k2. , b vits, vit e,and eat well but sparingly.
If I , on the road to 86, can do it then so can you. But mention the headaches to the Dr when you next see him/ heri.
I take take my preds in the morning early with breakfast ,some yoghurt and raspberries or such.
Today I am very comfortable apart from back and hands .
Sleep? As you taper sleep will improve.
Mine hasn,t yet but I live in hopes.
Good Luck....remember slowly slowly with the tapering and go back up a mg or two if need be.
"Can,t walk alone so cannot exercise much ."
Neither could I, walking involved crutches because of achilles problems, but I steadily lost 36lbs on low carb and 10-15mg pred!
Thank you PMR pro.I can walk with my stick and my helper,s nice muscley arm. But only see her once a week.
Otherwise balance is unsteady.
Dare not risk a fall.
Still if you can lose all that weight then I can...
Hope your achilles tendon is healed now.
I have never been referred to a rheumatologist in 18 yrs of arthritis.
Asked the Dr re the PMR and he said the rheumatologist
waiting list is too long.
Asked him to write a letter for private consultation....it never happened.
Guess it all depends on where onelives....and age.
You can arrange a private consultation should you wish to. I have just done that.
Inspiring Freya. That’s the spirit
🥂
Thank you Bridge 31, PMR pro ,and Edith Wales.Well at the moment finances are very restricted.
I will see how things go.
Life is
a bit complicated just now.... plans made have all gone awry..funny one expects a quiet, peaceful time in God's waiting room ......but it is not always so.
I never expected all the hassle, or the added bother of pmr. These things are sent to try us.
The thought of possible cancer did not trouble me....it grows slowly in the elderly anyway but my heart goes out to those who do have it.
I cannot tell you how kind all the staff were at Truro hospital .
I was not treated like a piece of old rubbish....but with the greatest courtesy and kindness.
Thank you all.
I suspect you might find that an awful lot of us have had our plans upended in retirement!
Too true!
Just a bit! 😂
It’s good to know that you were treated well in Truro. I am aware that services in Cornwall are a bit sparse, however kindness and respect make such a difference
Take care
🥂
I started on 12.5 at the beginning of the year and gradually reduced over time... ATM I'm on 5 mg and generally follow a reduction of 1mg pcm, which seems to be working for me.
Delilah'sDad,You have done very well and I do think I mg a month tapering is the way to go....as long as it suits you.
We know best our own bodies....each is unique and most wonderfully designed to heal itself ( but thank heaven for preds).
Hi I was diagnosed in late feb 23 and was on 15mg for three weeks and have been tapering off ever since. I have experienced all the withdrawal symptoms dropping 1mg every 3 to 4 weeks but when I got 4 mg I had a terrible pain in my right arm so stayed at 4mg for 6 weeks until the pain subsided. I am now at 3 mg and feel a lot better still some aches and pains but manageable. Taper slowly and and you should see some results .
Hi, you did not mention whether the taper was devised by your doctor or something you are trying to do on your own to reach 5 mg. There is a lot of information on tapering in the FAQs I believe. Good luck.
GP pharmacist devised plan and he rings me every two weeks to see how I am doing.
Hi, sorry, my question was to Spudleboy. You taper seems very ambitious. I hope it continues to work for you.
This has been on instruction from the GP, l am going to try to see another doctor today and see if I can sort out my meds
I am still under consideration of diagnosis - Probable GCA/PMR I was reduced from 40 mg to 30 mg recently (reducing after every two weeks) and found that this did not work for me. I had additional symptoms. When I saw the rheumatologist again they put me back up to 40 mg and after two weeks reducing the steroids by 5 mg (35mg) for two weeks and so on. I have recently even had problems even reducing by 5 mg. I will be phoning the Rheumatology Advice Line tomorrow. So definitely too quick for you.
How is your blood test markers the CRP and the Sed rates? my rheumatologist goes by the markers to reduce or increase the dosage of my prednisone.
I hope he looks for trends - both the markers are very non-specific and rise in response to all sorts of things, not just PMR flaring. Adjusting the dose just because the patients labs look higher can lead to yoyoing and that is the worst thing to do in PMR. Symptoms are the king - raised labs without symptoms, stay at the current dose a bit longer.
To quick in my opionion I have GCA again and my doc started me on preds 40mg. And reduce by 5 every 2 weeks but that is far to quick so she has left it up to me.
I had this problem!!
Eventually after reducing and then having to increase dose I am now reducing 1mg every 4 weeks, is so much better for me. Was told it all depends on how long PMR was in system before detected?
I’m very aware of just how long it’s going to take to wean off steroids but equally grateful that I can get on with life!
I wish you well
I have never reduced by more than .5 (1/2 MG) over a week. And I found that too fast. Now I usually decrease by .5 MG over 2 weeks or even per month.
I was diagnosed in March 2020and put on 15 mg. I’m slowly tapering down very, very slowly (currently just at 3.5).
As others have said, you have to reduce VERY slowly. (I drop by 0.5mg at a time). Once I get down to a certain dosage I stay on it for at least 6 weeks before tapering again.
Nothing can be hurried in this game - unfortunately
Reducing Pred
Reducing Meds
Reducing prednisolone
Reducing steroids
