It’s been 5 years with pmr. In the beginning I was on 25 mg. Then for a long time on 15. Finally in the last two years I managed to get to 2, 1.5 and a month ago to 1. All very slow taper offs. I was feeling good and much stronger, have been walking more. Just around the time of getting to 1 mg I started to feel slightly sore in my inner thighs (before it was always all thigh sore). A bit of shoulder pain too.
Eventually yesterday I felt very sore, tired and feeling difficulty to bend down. I am now sure it’s a flare up.
I saw rheumatologist last week. Just a regular check up. I told her about soreness and how it feels like pmr pain. But she said that my inflammation marker is in norm. It could be related to arthritis pain. Continue on 1 mg and see how it goes. Then maybe you can reduce it even further.
We all know how doctors have no understanding of this illness. So based on what I have read here I am going to go on 5 mg until I feel better and then start tapering off again. Maybe then drop to 4 mg for a week, then to 3 mg. What is the best way to get to where I was?
And I will see family doctor just to rule out anything else.
Any feedback will be appreciated.
Written by
Sheebo
To view profiles and participate in discussions please or .
52 Replies
•
Morning in Canada from England......up early this morning after a terrible nights sleep, so thought I'd send you a reply. So very sorry to read of your flare, it certainly does sound like PMR. I'm into my my third year with PMR/GCA and will certainly be in my fourth next year when hopefully I will manage to get of the wretched Pred. The experienced ladies will give you better advice than I and sure you'll be receiving some replies soon. You have typical symptoms of PMR. Can be hard to differentiate between PMR and Arthritis pain albeit one is muscular, the other joint. Good idea to increase to 5mg. I'm only tapering by 0.5mg per month that's why it's taking a long time. Currently on 6.5mg
The very best of luck and hope your pain soon goes.
Hello, I know those early wake ups in pain. This is much longer illness than I expected. I thought I am out this time and it strikes back. Good luck to you as well.
Haha, don't know who are ladies and who are men from some of the passwords. However, it does seem men are more likely to recover from PMR so much quicker than us ladies. But, yes, you can offer some very good advice too.
I think the modern way to keep things gender neutral is to address a group of two or more as “guys”... that’s the way it is in the USofA at least. Incidentally my wife hates being called a guy and I understand why. So glad in my more youthful days when I was dating, girls were girls and we were pleased about it. 😊
Yes, not keen on guys being used either. My sister (before her death) lived in the US since she was 21. When she came over for holidays, (oops vacations) she'd say England has become a mini US. She is right so many things these days we've copied from the US. Trimester is one used during pregnancy....never used in my day. Also graduation and throwing caps in the air was never seen here. And many more terminologies are used. I've noticed the word 'Right' being used in English films (movies) a lot now too. What's with the word 'Gotten' is there such a word ? I love the Americans though, and still have family out there.
Trimester - not true, it was the medical term when I had my children and long before. It was first used in that sense in 1821
Graduation and tossing caps was also done in the UK - when the men staged a revolt at the admission of women to the university. Certainly done at both St Andrews and Bristol - though to be fair, not chucking the caps in the air except to launch them off the Clifton Bridge into the river or into the harbour in St As
Sounds like a plan and you can probably drop back down to 1,5mg if that’s where you were last okay (really okay)…but not to 1mg immediately as that seems to be when the issue started.
As you discovered, at such low doses 0.5mg can make a big difference.
The lower, the slower. I too have been doing this for five years. I have been on 1ish for a year or two....I am trying to do 1 mg one day and 1/2 the next. I feel pain (feet, shoulders, etc) but I think it is old age (aged 65) and arthritis. My motto to myself: get on with it. Best of luck to you.
Sixty five isn't old these days, I can give you ten years. Was absolutely fine until Dec 2019...that's when my probs began. So sad, being retired is supposed to be enjoyed...money in our pockets, but unfortunately some don't enjoy good health.
Beautiful day out there today. Daughter been down to do my garden and all looking delightful again. I have such a good daughter and no idea right now what we'd without her.
Hi, from what I experienced, I think it’s a good decision to try 5mg.I’m now seven and a half years in to pmr. First got to zero in October 2020, but only lasted a month before I felt symptoms returning. Went up to five mg for about ten days then to three for a week, then two for a week etc.
Eventually, after spending ages at a half, I got to zero for the second time last May 2021.
This time I lasted some three months at zero before going up to three mg in September 21. Now after ages on very low doses I am again at a half mg, and will try zero for a third time at the beginning of June, after two months at a half..
Suffice to say, it is all very very slow at this stage, and, with minimal pred, there are no discernible side effects.
Pmr really does try your patience; it certainly does mine!
I wouldn't bother with the zero attempt again - you wouldn't be the first to discover 1/2mg mops up the tiny bit of inflammation but zero lets it build up again. That you have had the problem in such similar ways suggests that that 1/2mg is the dose you were looking for - the lowest effective dose. And whether doctors accept it or not - that is the reality of PMR for some people.
No way of saying - they reckon about 90% of patients do get off pred eventually but not in the couple of years a lot of doctors appear to think! It is fair enough to try to get off altogether - but when it goes pear-shaped like that more than a couple of times then a good way to go about it is to try once every 6 months or more.
1/2mg is such a low dose it is doing no harm but yoyoing the dose DOES create problems. Prof Dasgupta told us that he often keeps patients at 2-3mg as it reduces the risk of relapse. I think that is a bit high and quite a few can get to 1mg - but taking away the drive to reduce also helps because stress pokes at the problem too.
Since you got to 2mg slowly and OK I would try 5mg for a week and if you feel good then, drop straight back to 2mg, possibly 1.5mg as DL suggests, and see how that goes. That may well pacify your doctor and is the recommended way to deal with a flare that is due to overshooting the dose you need.
Do it once a week when you sort out your meds for the week..if that's what you do..and use a pill cutter, only takes a minute or two to do a weeks worth,..
I found quite a few 5 mg pills. Should have enough instead of using up 1 mg. Shortage of pred sounds frightening. Anything is possible these days. Like in states they run out of baby formula.
Hi sorry to hear of your flare. I’m not dissimilar to you. I was diagnosed in 2017 and put on 20mg pred. I have managed to finally get down to 1mg in January this year. But a few months back I had a very stiff neck at the base of my scull .
I managed to get to see Dr. And she did very thorough tests, as I was also having bad night sweats.
My X-ray was clear but blood markers were slightly raised, so she took some more blood 3weeks later and they were normal. In between my night sweats stopped.
Dr.thought I had had a viral infection and not PMR flaring . It was after this I decided to increase my pred. As neck was still stiff, so went up To 5mg for a couple of days and the stiffness started to improve so I then decreased to 2.5 mg for 6 day and tomorrow I’m going to go down to 1.5mg .
The stiffness has now gone xx and so I’ll see how I go.
Having learned so much on this site I think sometimes we know our bodies best xxx
Good luck on your journey, I do hope things Improve for you soon xxx
This site is full of invaluable information and advise, we are so luck to of found this site and it’s lovely people willing to help and support us.
It’s mind blowing how this inflammation manifests itself differently every time. For me this time it’s inner thighs, shoulders and sometimes knee (knee could be secondary because of walking restrained due to pain). Also feet cramping. I took my first 5 mg today and pain is less in the afternoon. Happy again!
I know, just when you think you are free, it slaps you again - not so fast, my friend! I am glad there are so many experiences shared here. I know now that it might take several attempts to get off completely. Even though my rheumatologist said that some stay on lowest possible dose permanently. 🥵
1/2mg can make a difference even at high doses - and the precentage difference at low doses is much higher. Many doctors think that low doses aren't doing much - nurses often know better though luckily. Even 1/2mg can be the difference between the inflammation being controlled long term and preventing a relapses and not.
I'm in my 4th year and recently flared at 0.5 mg. I did just as you propose, 5 then 4, etc, but I have stayed at 2 for a few months now. With the backup of Actemra, I will try again soon. Some of us just need a little pred in our lives.
Hi Sheebo..My Pmr was diagnosed in 2015 I was prescribed 10mgs pred..all pain gone in 24hrs..started to taper 1mg every 2months untill 1st flare so yo yoed up and down a bit as not much help by GP so had to find my own way..didnt know this site existed till recently diagnosed with GCA ..I finally got my dose down to 1mg in Sept 2019and stayed there for about 5 months but the pain returned as the dose was too low so the inflammation was building up again and just as covid was showing up in the UK ..I was in a lot of pain and and decided to up my pred to 5mgs..as gp surgery rules were changing it was difficult to be seen so i looked after dose myself. I thought it may have been burning itself out when on 1mg until the pain surfaced but 5mgs knocked out the pain so i i felt loads better but then in April 2021 diagnosed with GCA..and havent felt well till just recently..started on 40mgs but now on 12.5..so another long run on pred..
I like the interpretation that PMR/GCA is a dripping tap and the pred. Mops it up. I wish there was a washer for the tap to stop it dripping. 😂😂maybe one day 🤗🤗
An update on my flare up. I went up to 5 mg of prednisone for about 8 days. When started feel better - dropped to 2 mg where I am now. Seems to feel good after couple days of light pain. So next drop will be to 1.5 where I was ok before and will stay on that for a while.
Shortly after my flare up I also got uveitis- eye inflammation. I woke up with eyes completely red, some pain around eye balls and sensitivity to light. After going to several doctors and specialists who were thinking it’s a pink eye (Canadian healthcare is not ideal), I run into optometrist who diagnosed me with uveitis. Prednisolone drops were prescribed. It’s much better now and I am tapering off the drops. Dr said that this inflammation was part of my pmr flare up. It can cause blindness if not treated quickly. It can also reoccur.
So just wanted you all to know that this can happen together with pmr flare up and watch for the symptoms.
In the beginning of my pain I was trying to figure out what’s going on with me so I went to chiropractors and physiotherapists. I never heard of pmr. It is quite rare illness, usually no one ever heard of it. I was also very healthy and active so to get this debilitating pain was a big puzzle. Until I found out what it was.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
From 30 mg to 11 mg and feeling very drained
Down to zero and having arm and leg pain
Flares trying to get from 9 mg to 8 mg
Flare up !!
