Hi, I’m 63. PMR hit me 4 months ago. Luckily my GP picked up on it right away. I did the 15 mg of prednisone for a week and off it to prove to myself what I actually had. I saw a rheumatologist and went back on the 15 mg. He wants me to drop 1 mg every two weeks until I feel a difference I guess. I don’t like taking prednisone either, but I think you have to have some quality of life. I just can’t believe I could be fine and something like this hits overnight or within a spand of a week your life is changed!! I really have a hard time with that. I was told it’s usually last a year, now I’m seeing 6 years😢.
I don’t have pain in my temples and no eye problems as of yet, but I do have headaches. Is that normal with PMR?
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Nikkigabi
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Did the headaches predate the pred? They are a listed side effect of pred.
We generally think 1mg every 2 weeks is too fast - simply because it may take that long for symptoms to return. A much more usual approach is to remain at the starting dose until the symptoms are stable and, if it applied, the blood markers are low and stable. Then start reducing slowly. I suppose at least he has said 1mg per 2 weeks - anything bigger as a reduction step is too much for most people.
I really do wish I knew where this idea of "it lasts a year" came from - because it isn't from themedical literature or the vast majority of patients. As you've already seen, the median duration is nearly 6 years:
Obviously there are people who get of pred quicker - but the ones who get off in less than 2 years are at a greater risk of a relapse at some later point. A year to eighteen months to get to 5mg perhaps - but off pred? In his dreams - we wish.
I started with 15mg in April and just dropped to 14 this week. I was doing good with 15mg, do you think I should stay on that longer or try dropping maybe 1mg a month? I felt a difference the very next day of dropping. Tired aching.
When in april? You must have been on 15mg for 3 or 4 weeks have you? If you feel OK that should be fine.
When you feel aches in the first 24-48 hours after reducing the dose it is much more likely to be steroid withdrawal and that will then improve over the following week or so - and that is why we feel every 2 weeks is too often for the people who DO have that problem. Some don't.
The other thing you can do is use a slower approach such as this
There are other versions but this was the one I worked out several years ago and it has served many people well.
You just try the new dose one day at a time, going back to the old dose the next day for a few days. Then you try the new dose you are aiming for again. I find I take 3 tries with the new dose before I feel no effect - I don't really ache, just feel "different". If you start with 1 day new, 4 days old and start on the 1st of the month you get to the next dose in under a month and can have a few days just at the new dose before starting the next reduction step - it lets your body catch up.
If you have gone to too low a dose then it can take a week or two or even longer for the inflammation to build up enough to cause symptoms again - if it happens don't think it will get better. Go back to the last dose where you were OK, wait a month and try again. Often it will work the second or third time. But nothing you do will allow you to get away with reducing to a dose that is too low to manage the daily dollop of new inflammatory substances that cause the symptoms. PMR is the boss I'm afraid.
It is also a good idea not to overdo things - the pred combats the inflammation but it does nothing about the underlying autoimmune disorder that makes your immune system attack your body as if it were "foreign" like an invading virus or bacteria. That chugs away in the background and makes your muscles intolerant of acute exercise. Do too much and PMR will be back to bite you in the bum!
Wow thanks for all the info. I’ll have to go back and read it again let it sink in, lol. It’s good to have someone to talk to about it, no one in my life understands what I’m going through.
"no one in my life understands what I'm going through'' That's why this forum is such a godsend. So many of us have felt that way so a big warm welcome to the club that does understand 😊
Hello my name is hali12. I have been on 50mg prednisone. I also had a biopsy on this past Tuesday. Waiting for results on Monday. Any thoughts as to where this is going to take me. I’m still in pain in my right side of the the headache. Please help me.
I have replied to you on the thread you started - if 50mg has not improved the pain since Tuesday you should contact your doctor as soon as possible. Either you don't have GCA or, if you do, you need a higher dose.
I'll let the "experts" advise you about tapering... I just wanted to say, I'm so sorry. I too had my life turned upside down in the course of one day! November13, 2017. I have both PMR & GCA. The hardest thing was coming to grips with the fact that I was "ill," and it wasn't something that was going to go away any time soon. The past 6 months have been hell, but have also been a time of great personal discovery and revelation, I turned 64 yesterday and feel more optimistic about the future than I have in many months. Give yourself time to grasp what's happening, and rest, rest, rest. Best of luck and I hope your journey on thus toad is short.
I have a hard time accepting I was sick also, how could my body let this happen. I’ve always been pretty healthy until this hit. I’m just starting to read more about it and let it settle in, I guess😬
Oh, we all do understand, think we all felt as you do. This forum was a godsend, so thankful I found it right away. My rheumatologist mentioned this this lasts less than 2 years on the day he diagnosed me. I was so thankful that day to find out what was wrong, I didn’t really question him further.
Yes I was very lucky my GP diagnosed it right away and sent me on to a rheumatologist for second opinion. I very thankful for this site also. So informative and everyone is there help in some way. I’m working on realizing how much activity I can handle without making the next day too bad. Work in progress, lol
Anyone try Hemp Oil. I just bought a vape pen thing with hemp oil. Supposed to help with pain, sleep, and more.
Hi, Nikkigabbi, I have not tried hemp oil, but I do use the vape pen with CBD/THC oil. In the beginning, I tried CBD tablets, but they took way too long to work-- maybe 2 or 3 hours before I could actually sleep. Then I tried edibles, but since it's so difficult to know exactly how much you're ingesting, I would take a little too much and would wake up extremely groggy in the morning. When I tried using the vape pen, I couldn't believe it... it works almost instantly! It would take whatever pain away I was having (before I even started on the pred); not completely, but enough so that I at least could SLEEP. I've got it down to exactly the ratio I need, which is 1 to 1; in other words, 50% CBD and 50% THC (Indica, which is the strain that helps you relax). Since I'm on the pred now, don't need it so much for the pain anymore, but it works wonders for sleep! (Of course, I only take it at night and not while at work!) I resisted and resisted succumbing to taking prednisone for my first 4 months with the excruciating and debilitating pain of PMR, trying to treat it as naturally as possible, but between the smart Aunties on this site and the PMR just being too strong of an illness, I ended up saying, "Just gimme the fucking steroids!" This was January of last year, 2018. Started on 15mg and now (again, because of the god-send advice from the Aunties) down to 6.5mg. I'm also taking all the recommended supplements (Vit D, MSM, calcium, and others), Chinese herbs, and making sure I get REGULAR exercise, with an emphasis on weights/resistance exercise, which helps to keep the bones strong. Hang in there, Nikki, and just take it day-by-day... we'll get through this!
Hi, I was diagnosed in December, getting the impression from doctors now they assume it's a twelve month taper off from starting dose of 15mg and now on 12.5mg this week for 3 weeks. But confused how people change and increase their doses individually as I seem to be having a battle just to get a months supply. Requested prescription for more 5mg as I had only two days supply left and only received 28 tablets so 14 days supply only. Must admit it's sent me quietly in a panic which seems over reaction but couldn't help it.
You need some brighter, better educated doctors I fear. PMR has a median pred treatment duration of 5.9 years. It is a chronic autoimmune disorder, like theumatoid arthritis except for 95% of patients it does burn out and go into remission for a long time. However, people with a short duration before initial remission are more likely to have a second episode - and third episodes are not unknown.
And since it is dangerous to be without pred suddenly, you need to speak clearly to your GP as he writes the prescription. What they are doing is appropriate for much use of pred but NOT for PMR which is chronic.
is written by a top PMR rheumy group to help GPs manage their PMR patients better - they work on at least 2 years but do mention somewhere that the reduction must be guided by the patient's symptoms. Something that is mentioned in every guideline - but is mostly ignored.
Because they are told only to give the amount that is likely to be used - for most people on pred that will be not more than a month and more likely a couple of weeks. It is because stupid people take the script and collect it as it doesn't cost them anything - and then don't take their pills (not just pred, everything) which is a considerable waste of money. We are differnt but get caught by the rules made for the majority.
I am so sorry you have been diagnosed with PMR. As PMRPro says your doctor may be a bit over optimistic about the time you will be on pred. Some of us think doctors say a year to stop us feeling too depressed! My GP has given me tablets in 28s I just order them every two weeks. I can order on line which makes things easier, can you do this? I think they may realise that it may be easier and cheaper for them to give you a month’s supply eventually. You can get 1mg tablets in the future when you want to have smaller tapers. I think over time you get more knowledgable about dose and can to a certain extent plan your own tapering. Some doctors are happy for people to do this. Your doctor should also prescribe vit D and calcium as well to counteract one of the side effects of pred. You should also be offered a Dexascan to check your bone density.
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New to PMR and this forum. Thanks to you all for all you are sharing.
Anyone had this? Advice 
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