We are all encouraged to reduce Pred dosage but what exactly should we expect when we do? As I continue to reduce my dose, I still have have pain and stiffness in my shoulders and hips. (Still hard to roll over in bed.) Worse in the morning but then gets better as I move around. Blood work 'looks good' so I keep going down very slowly, hoping that my adrenals will kick in and take care of the remaining inflammation. Pain and stiffness is totally bearable now but it certainly is still there. I don't want to take more prednisone if I don't have to, so I think that as long as I can functional decently, it is OK. My journey has been about 20 months and I am now down to 2 mgs. Last time I got this low in prednisone, I flared up and upped my dose for a bit but I am hoping this time will be different. Any thoughts? Thank you.
Reduced symptoms...what are we going for here? - PMRGCAuk
Reduced symptoms...what are we going for here?
Sorry to disappoint you, but I think it’s going to be a repeat of what went before.
You are not tapering to zero relentlessly - you are trying to find the LOWEST dose that gives you the same relief the initial dose did.
You’ve obviously gone way below that dose.
20 months is not very far into the PMR journey - despite what you may have read or your doctor tells you - much nearer 5 years.
Pain and stiffness may be bearable, but it indicates your illness is still very much alive.
You should stay at the starting dose of 15 or 20mg for 4 to 6 weeks until your symptoms are stable. Then you reduce in small steps and slowly (once a month) until you find the lowest dose that manages the symptoms as well as the starting dose did. You should never feel worse at the end of a taper step than at the start and once you do, you go back to the previous effective dose and mark time there for a few months. Then you may try again.
The adrenals have nothing to do with the inflammation - it doesn't work that way.
It is all very well "managing" - but if there is any left over inflammation the dripping tap will fill the bucket eventaully and you will be back where you started. There is no virtue in trying to get by on too little. In some people the blood levels don't go back up while they are taking any pred at all - so you go by symptoms. And anything under 5mg after 20 months is great.
If I were you I would stop reducing for now and see how things go. Nothing lost - and possibly a lot to be gained.
“It is all very well "managing" - but if there is any left over inflammation the dripping tap will fill the bucket eventaully and you will be back where you started.”
I’ve seen you say this before. In scientific terms what does this mean? Is this somewhere in the literature? I’m puzzled by this claim but it seems to be crucial to what you are saying. I’d appreciate a steer!
It's just an analogy to make it easier to envisage.
The inflammation that is created each morning doesn't just dissipate without some form of treatment. Your immune system is deranged, as long as it is deranged it will be producing inflammation, not getting rid of it. As long as that inflammation is being created it is causing tissue damage and swelling - which are what cause the symptoms. It won't necessarily cause symptoms at a low level but eventually it will mount up and have more effect - the bucket will fill up and overflow and you will notice it.
Imagine then using a beer mug (which has the same or greater volume than the amount the tap is adding per day) to scoop out water from the bucket once a day - it doesn't get to the overflow level, symptoms won't be apparent. Then you decide to use a coffee cup at the same rate - and the tap is still dripping into it at the same rate which is more per 24 hours than the coffee cup holds. Obviously the bucket will eventually fill up.
You need an adequate amount of pred to hold the level steady - take less and eventually it is overtaken and symptoms reappear. That's all.
So thank you for this and just to follow up, can you point us to the scientific literature on which this account is based?
No, sorry.
I think maybe then we should be cautious about this analogy.
It probably doesn't go as far as you would like but this paper suggests that in chronic inflammation the "tap" stays on and can't turn itself off so the body "fills up" like a bucket.
"Unlike the inflammation that follows a sudden infection or injury, the chronic kind produces a steady, low level of inflammation within the body that can contribute to the development of disease. It’s the result, in part, of an overfiring immune system. Low levels of inflammation can get triggered in the body even when there’s no disease to fight or injury to heal, and sometimes the system can’t shut itself off. Arteries and organs break down under the pressure, leading to other diseases,
Hint of pedantry here?
Not everyone has a scientific mind, and a picture paints a thousand words so they say. Creating an image is a great way of teaching and explaining, especially when done with patience and humour. Translation of complex scientific ideas into systems of everyday life is the sign of a good teacher, and the basics are understood before moving on to the next step.
Personally I think it’s a good analogy, easy to understand, and if you listen carefully you’ll ‘hear’ the penny drop 👍🏼
All I would say is that the analogy does not represent the science. In that sense it is misleading. Why don’t we just say to people that the pred dose has to be matched to their level of disease activity, in general as assessed from symptoms, sometimes by trial and error. What is so hard to understand about that?
People learn in different ways. Providing options that people can use to understand or learn about anything includes analogies, research papers, metaphors, pictures, video, cartoons - anything that allows people to utilise their own learning style. I can use multiple learning styles to reach an understanding of something whether the access point is simple or complex. The bucket works for me as much as an understanding of how inflammation works. I don't judge how people access the ideas.
Well said Soraya
Personally, I think if it is hard to roll over in bed and pain is bad in hips, then 2mg isn't enough to control the inflammation. We need to be concerned about not only the prednisone side effects but also the problem inflammation is creating in our bodies. It needs to be under control.Good Luck
Hi Jackswife. You are telling my story. As I kept trying to taper!!! I had the pain that nagged me from wake to sleep. Made it difficult to turn over in bed, and Shoulders that hurt when I put on my bra., etc.
Long story short...you are not getting enough prednisone to manage your inflammation. The disease is not gone, and reducing prednisone will not make it go away faster.
Essentially what you are doing is taking a tiny bit of medication, and getting no...zero...benefit. While the illness is still rolling along behind the scenes, making you miserable.
I Know this, because I have done this same thing 4 times. Down to 2 mg pred, and mizerable! Then a flare, and I finally upped my pred to 7 mg...and the pain stopped.
PMR diagnosed 6 years ago, I am currently using 10 mg...to manage a flare.
This is a situation where it feels like you should be tapering off prednisone, but truthfully, from my experience, and the wisdom of those who have spoken earlier...the goal here is not to get off pred, but to manage the inflammation and potential vascular damage, caused by your autoimmune illness.
Your illness is very likely to be with you longer than you want...and you can fight with it the whole time, or you can learn patience and acceptance,.... Learning to read your body to mindfully adjust your prednisone as your illness needs.
Sorry to seem blunt, but (it seems) you are having a harder time than necessary due to a pressing need to get off prednisone.
Prednisone is your friend, its side effects at lower doses are minimal, its cheap!, and it Returns some measure of quality to these irreplaceable days of your life.
Kind regards, Jerri
PMR diagnosed 2013
Brilliant reply I have been up and down several times over the last 6 years and am now on 5mg a day slowly slowly is THE ONLY WAY to be pain free.
You're right, Purplecrow...I am responding to press to get down/off prednisone.
Oops..pressure from my doctors to reduce Pred. my blood work looks good, so they push me to get off Pred. I've already dumped one doc because I felt that she didn't take my pain seriously.
Your instincts are spot on regarding the doc. There is new and increasing evidence to support the use of prednisone for tx of PMR, and if the doc hasnt kept up on the info, /he will still be working on the old "boogie man" fear- angle of this drug.
Also the time frames for working through the illness have dramatically increased (from 1 year to 5 or 6 years). This is also newer information.
Good on you for seeking out newer thinking medical advisors. They are not the bosses of us, they are our colleagues in our treatment. Our part is to keep educating ourselves also.
Kind regards, Jerri
As an addendum to my earlier reply, might be helpful to have a look at this - healthunlocked.com/pmrgcauk...
Hi jackswife, when I first started prednisone I was told I would be off prednisone in less than 18 months . It took me a bit to realize this was not true and getting to zero was not the goal. I was diagnosed Dec 2015 . I get to 10 mgs down from 60 for GCA and flair.
I now have as my main doctor for my tapering an eye physician who is not in a hurry to bounce me from high to low. I am currently at 20 mgs and have the niggling of a headache. In 3 weeks we are going to do sed rate and then if down will go to 19 mgs. Then 3 weeks n alternate between 18-19 and then to 18. Etc etc....
my eyes are doing good and no issues can be seen with his examination.
Since he is taking such good care of me I have opted to not pursue the new rheumatologist. My FNP is also awesome and coordinates all my care between the dermatologist for my melanoma care and my eye guy.
Oh n the idiot who told me I had 1-5 yrs with my melanoma was full of hot air. My new guys says we are on top of it no worries...
I said all that to say this... you are way too low. You should not have so much pain. What are your labs saying?
I so wish I'd found this forum 4 years ago. I'm lucky in that pretty symptom free at 4mg after just over 4 years. Wish I'd known how well I was doing. The constant pressure to get off Pred by the medical profession is not helpful. I'm happy now to manage my own disease and am able to do so with repeat prescriptions. My more serious probs now are recovering Trochanteric bursitis and probably hip osteoarthritis which mean I can only walk a few hundred metres max. I never thought I'd get to the stage when the PMR wasn't the main enemy! So I agree with every one on here, its really hard to accept that you cannot take on this disease the way you have tackled all the other problems in your life. But the simple truth is that it does control you and you can only manage it as best you can. I re read the advice again and although have several times before now realise I need to accept the 'at the lowest comfortable dose' is what I' aiming at- not zero. Good luck
You are so wise and it’s my story.
I am so glad you wrote this as I have to be constantly reminded to be patient and change my compulsive, I can do it myself, style.
Just reading a couple of the comments reminded me to remind you of the gorilla in your life that you don't want to wake up in case it totally trashes the kitchen:
Hi it’s an absolute rollercoaster, some get off it and some don’t, I never got off and I’m still living on 7 1/2 a day. I choose to view them as my friend because either I’m in control of it or it’s in control of me and the steroids definitely give me the edge where control is. Personally, being stiff, not being able to roll over, waking up with stiff shoulders or taking one or two more pills is a no-brainer. Give me the pills and some quality of life every time.
For me and my GP it’s always been about getting the balance to live a life of quality. It’s not about getting off pills, far from it!
Be 😊
I was a babe in the woods and followed my MD’s taper instructions and was off prednisone in 11 months, after only suffering symptoms for 3 weeks and getting immediate and total relief on prednisone. I didn’t know any better because I didn’t discover this forum until after my taper ended.
Then when niggles arose - stiffness after sitting, sore shoulders (injured before PMR and masked by pred?), new hand weakness and tingling - and drove me to find this site. Wish I’d found it sooner.
Since I was already off pred, and my symptoms were much less intense than the initial attack, and since I was not clear on the difference between PMR relapse and prednisone withdrawal, I have soldiered on.
I am taking Aleve twice a day and functioning fine. Fatigue was never an issue for me, luckily, so I’m staying the (non)course.
My main problem is muscle weakness and tendon issues. So trying to increase activities to increase strength. Hope I’m not headed for a relapse, but I’m almost 5 months without pred. (I do have a stash of 15 1mg pills in case I do relapse. I see my doc on Monday, so would imagine I’ll get blood tests and other advice.
Good luck in your journey!
Something similar here, except I did pred for just three weeks! The disease is still active but I can live with the discomfort. Like you I’m trying all the time to work out if it is about to ambush me. If it does - there’s always pred.
And PS I think you are right. This disease is about tendons...
I am at the stage of 7mg and my shoulders hurt, hands hurt, dressing after having a shower is exhausting and very painful, as clothes don't slip on so well when you are a bit damp! Yesterday I felt so down in the dumps as I felt my quality of life was c..p, (sorry). I was first diagnosed in 2015 and after initially starting at 15 mgs was put up to 30 as it hadn't had the result the doctor expected. My query is, how do I know what is PMR, what is arthritis and what is getting old????? Doctors aren't much help and my rheumy just wants to see me off Pred. (wouldn't that just be great!) I do also have the issue of scoliosis, which would be quite difficult on it's own, as that can be painful at times. Oh dear this post is one long moan, but I must admit that I am getting pretty fed up with half a life. By the way I am 76 and have always had a very active life and it is just driving me crazy just pottering about and still feeling grotty. I am due to see my rheumy on June 10th, booked a blood test yesterday to test my CRP levels. I feel I really have to do something to get out of this pit of despair I am in at the moment, any thoughts out there?
It is terrible when you feel like you can't even dress yourself without feeling like you need an upper body transplant. DoberML , I am 58 and I struggle after showers, or if I come home from an activity or event slightly clammy in humid weather. I end up having panics as I try and pull clothes over my head! Someone suggest I shower on a night instead of tiring myself out in a morning. That way I just stick nightwear on. Or put the towel on the bed and air-dry so i can get in the bed. Would you be able to try that? It was a revelation as my brain hadn't had the wherewithal to think if that!! Maybe your are flaring, or perhaps suffering the spring blues for the past few weeks? I hope you feel a bit better tomorrow. 🌻
I do wait as long as I can before attempting to dress, cleaning teeth, doing make-up etc. Perhaps if I have my breakfast as well, it will give me a bit more time. PMRpro's idea of a hairdryer sounds like a brilliant idea! What indignities we have to go through with this wretched illness! All the best to everyone out there.
I think I might be looking for a doctor, of whatever variety, who cared more about their 76 year old patient and what they can offer to improve their quality of life than getting them off pred come what may. I don't dry myself after a shower - haven't for 15 years since PMR started. I blot the worst, wrap myself in a large towel and sit at the computer or lie in bed for half an hour. If I'm in a hurry I use the hairdryer to do the difficult bits. Not exhausted before I start the day that way.
If you needed a higher dose at the start - the chances are you also need a higher than expected dose at the end too. Maybe your 7mg is someone else's 3.5mg? You are at the adrenal function conundrum stage - and maybe, being that bit older than some others, your adrenals are being lazy? That makes you feel pretty rubbish. Long term illness, especially PMR as an autoimmune disorder, and loss of your lifestyle contribute to depressive mood. I think your rheumy is looking at only one facet - find a kinder doctor if you can.
I have booked my appointment for 9 am so that the rheumy can see just how hard things are for me. I have tried my best to reduce and can only put all my current symptoms to him and appeal to his better nature! Thank you for your reply.
Thank you everyone for your kind, generous and informative replies and helpful links to more info. You're an amazing group, truly. I have learned more from this forum about PMR than from any doctor! After your comments, I've decided to go up on my prednisone to find a comfort level and then slowly reduce again. It is difficult to find the right doctor. I've already switched once when my rheumy was not taking my pain seriously. Because my blood work was going down, she flat out suggested that I must have "pulled something" when I complained about pain in my groin (bilateral). I thought my new doctor would be different but she is not. I plan to return to my regular primary care physician to see if she will work with me on this.
I am grateful for you all and I am sorry for those of you who suffer much more than I do with this illness, as many of you do.
Yes this group is great for advice and support. Many of us have learned more here than we ever did from our doctors. Glad that you have decided to increase your pred. No point in persevering with aches and pains when they can and should be controlled. Inflammation is harmful. Good luck with your doctor
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