It has been a long time since I have posted. I have had a very rough few months. Got down to 5mg and was doing relatively well till I did a 30 min walk. It was a beautiful sunny day and I was thrilled to be out in the sunshine. But in a couple of hours after returning home a dull pain started in my shoulders and buttocks. By next morning I was really in a lot of pain. I upped to 6 mg. Persisted for two weeks with still a lot of pain. Went and had inflammation markers tested and they were up significantly. Rheumy said to go up to 7mg. I have been at 7mg now for one month and dropped to 6.5 mg this morning. I still have slight pain in shoulders. Don’t know if this was the right thing to do at this time but my Rheumy said I need to start going in the right direction. I feel totally disheartened I don’t seem to be making any progress. It has now been two years that I feel I am fighting a losing battle. I would like to wish everyone a happy NEW YEAR. thanks for listening. ❤️
Rough few months : It has been a long time since I... - PMRGCAuk
Rough few months
I know you don't want to hear this - but 2 years is really quite early days. Only a third of patients are off pred in 2 years. I would be very surprised if a 30 min walk caused all that - it was lurking for you to go to too low a dose and that is probably what had happened. You had taken the average sort of time to get down to 5mg - you really have done pretty well so far and a lot of us would swop places with you!
If you'd asked us what we would do, we'd have suggested adding 5mg for a week or so and then go back to 6mg and see how you got on. Which wouldn't have felt to bad would it? But you aren't so far off even now. And you have also to remember that even if it doesn't feel it, the last 2 years have been hard work - and eventually it does catch up with everyone. This is just a blip - it will sort itself out. What is important in the meantime is that you feel as well as you can - and that means being on enough pred.
Thank you for your reply. I did not drop to 6.5mg today but stayed on 7mg and am still in a great deal of pain. Should I up the pred, if so what would your suggestion be.
“my Rheumy said I need to start going in the right direction.”…
Think your Rheumy needs a better understanding of your illness.
You will go in the right direction (in his eyes) when your PMR lets you, not when he thinks so!
Thank you for your reply. I have been down to 5mg but have never been able to maintain it.
Hello TINYdes 😊
Believe me, I understand your frustration, but I agree with PMRpro, I think that you are in fact progressing well. Two years really isn’t a long time with PMR, unfortunately…..
Your Rheumy doesn’t seem to be giving you much confidence……S/he may be right in advising you to reduce, but I’m not sure. In the circumstances I’d stick with 6.5 for a couple of weeks and if you still have pain, go back up to at least 7. Or better still, add 5mg for a week as suggested by PMRpro, to clear the inflammation, and then you can drop back to 6.5.
Hang in there, you’re doing well, you really are 😊xx
Thank you. Some days I feel as if I am making no progress at all.
I know the feeling…..😟
But then I remind myself that ten months ago in March 2021 I was unable to get out of bed unaided etc, and that pred has been really effective in reducing pain and increasing my ability to mobilise…..I started on 15mg but as I had to go up to 40mg in June because of GCA, I’m still on 12.5…..so not much progress in a way….yet huge progress compared to where I could have been without pred.
The particular stress involved with reducing pred with only occasional medical input, should not be underestimated. You’re really doing great 😊xx
I hope you keep Improving. Anyone that does have this condition can not understand what we go through. I sometimes feel sorry for myself but I feel bad that my husband has to put up with me when I go trough a bad patch. Have a great NEW YEAR. Hope we all make progress this year. 😊❤️
You obviously don't really understand the nature of the disease and nor does your doctor - the start is to taper the dose to find the lowest dose that manages the daily dollop of new inflammation. The pred cures nothing, there is no cure for PMR, it is a management strategy to allow a decent quality of life or at least with a lot less pain and disability, in the meantime while you wait for the autoimmune disorder to burn out and go into remission. You appear to have found that level - not 5mg, that is too low, but maybe about 7mg once the built up inflammation has been cleared out again but having had a flare it might be a bit more for a while.
Once you have found that dose, you stay there, there is no further "progress" to look for until the disease activity has fallen again. It doesn't mean you won't get lower, just not yet. It will come - but after 2 years you are doing fine. Your PMR isn't the same as anyone else's, you can't measure it against others.
So well explained, I wish you were my RA consultant.
Doctors are never particularly gifted at translating doctor-speak to people-speak 
I agree with you. This group and the fab information provided are who I turn to when I feel overwhelmed. I barely post anything as I can find answers just by reading the responses to others. I've been so poorly of late and find comfort with the knowledge found here. It literally has been the only I can get answers to this strange illnesses and manage the condition with more confidence. Thank you all for your incredible help and support!!
Have you been using a slow taper method, like Dead Slow Nearly Stop or DorsetLady's Simple Taper? These give your body a way to adjust to a lower dose over a month or six weeks, which helps avoid pred withdrawal pain, and also help one know when it is pred withdrawal or if it really is the PMR.
Were your symptoms as well controlled when you went up to 7 as they were at the beginning? If not, I suspect you needed a higher dose at the start of the flare to get it properly under control. As PMRpro suggests, 10 for a few days might have been a good idea, then a fairly rapid drop back to the dose where you last felt well. I've gone through something similar this year myself and it is disheartening, but on the other hand we know pred at our low doses really does give us back our life. Your rheumatologist notwithstanding, slow and steady and sometimes stopping really is the game for us.
No , my symptoms were not well controlled on 7mg. I still have pain and stiffness in my neck and shoulders even when doing light activities around the house. I will move up to 9mg for a week and then back to 7 mg. To see if that will work. I have not tried the Dead slow almost stop or Dorsetlady’s Simple Taper. Where can I find them. Thank you for your response.
When all of us have suggested adding 5mg to the dose where the flare occurred why are you talking of only adding 3 or 4mg? Even 1mg can make a massive difference. It isn't a permanent change but you need enough to mop up the inflammation. Once that is done, you can identify the right dose. But if you had problems at 7mg - 9mg is not a lot to springclean with. And there is no point at all going back to 7mg if you already KNOW that it isnt enough. There is a definition of madness: repeating the same action and expecting a different outcome!
Here- healthunlocked.com/pmrgcauk...
And here -
healthunlocked.com/pmrgcauk...
But neither will help you get below the level YOU need..you need what you need! Simple as..
However, they will help you taper more easily in future.
I will read it right now. Thank all of you for your help. Poor PMR PRO must find some of us very frustrating!!
I don't intend to sound as though this is all about me, but you may find my story both instructive, because of my mistakes, and encouraging. First aware of what turned out to be PMR symptoms 2014 but it may have been brewing before. I was generally healthy, mid 60s. Diagnosed and started 15 mg mid 2015. Uneventful taper to 3 mg by end of first year, using the DSNS taper below 10 mg. Another year to 1.5, and then several years at or around 2 mg. Late 2020 was convinced my osteoarthritis was worse. However early in 2021 my CRP was higher than it had ever been. I spent several months doing very much what you appear to be trying, being very much in denial that PMR was genuinely flaring and I needed a dose much higher and for longer than I had since starting pred. (I should note that I was at zero, after taking an entire year to taper from 2 to zero, for a few weeks in early 2020, but seemed to be okay at around my old dose of 2 for some time.)
It wasn't until I admitted I was really quite ill, and took 10 mg and subsequently tapered from there going much faster than original taper, but always paying attention to how I felt through each 24 hours period, that things turned around. I have recently been testing the 3 mg waters again. This adventure has been going on all 2021.
Would you kindly explain how doing the DSNS method helps differentiate a flare from steroid withdrawal? Thank you!
It allows the body to get used to the new dose much more slowly - steroid withdrawal is the body objecting to the sudden and relatively large change in dose. Make it small and slow and the body doesn't notice the change as much. One day at a time of the new lower dose often goes unnoticed until the body realises it is fine, tomorrow is back to normal - and it is also easier for you as feeling not so good. I think it is less differentiating between withdrawal and a flare - it is more about minimising the discomfort while reducing.
Steroid withdrawal almost always appears immediately you change the dose and then improves over the following days but in the meantime you may feel quite unwell, A flare tends to only manifest after several days - and then steadily worsens.
Thank you. That helps.
Hi, yes. Well said. I have Gca flares and pmr flares. This is a good method. I actually finally went off a 2mg daily maintenance dose for 2 years. With a new flare, upped to 10 mg - 2 days , then a slow taper, to the 2mg. After 2 weeks -- off the pred.
This deals with the Gca and the pmr.
Hope you continue to feel better.
Happy New Year to everyone!
Keep trying
Lynn, Whittlesey, N yc
Morning, I'm the same as yourself. I was diagnosed in Dec 2019. Currently 6.5mg (decided to drop by 0.5mg monthly now). If I continue this regime I will hopefully be on 1mg by Dec 2022. Like you, I too have been experiencing painful upper arms and shoulders, but try to ignore that, as my worry is GCA more than PMR. Good luck and slowly does it !!
Keep at it, managing this illness is like Sisyphus heaving that rock up the hill to watch it roll down again. I have been at this for three years and and am now on 7mg looking to commence Hydrocortisone as an alternative to Prednisolone when I reach 5mg, but, and there is always a but, I require regular dental interventions as a result of Radiotherapy treatment and the dental department usually requests me to increase the Prednisolone before appointments and the after pain and immflamation it causes cannot be managed by Paracetamol alone despite what the Ophthalmologist says. The God's do jest with us.
Most of us have been struggling with 5 and 10 years. We all thought we would be done in 3!!! That's rare.
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