Which is worse for your body? Having mild inflammation and tolerable pain or a higher dose of steroids? In other words, I am keen to taper as much as possible. Is it damaging to tolerate some level of pain in the process? Perhaps it’s inevitable, even. My doctor says it’s very important to increase my pred dose if even the smallest pain returns. But I read here and elsewhere of doctors urging people to try to tolerate some level of pain to avoid increasing their pred dose. What’s the best approach? PS: I’m not talking about debilitating pain here. Thank you!
What’s ultimately worse for your body: steroids o... - PMRGCAuk
What’s ultimately worse for your body: steroids or inflammation?
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Fin70
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The trouble is, mild pain from the inflammation doesn’t remain static. In my experience it gradually gets worse. Hence the bush fire analogy. Damp out the little smoulders before they become a full blown flare. I would be glad to have such a sensible doctor. Some of them don’t get this bit right.
Good point. I think this sounds highly likely. Thank you for this insight.
Mine has very much stayed the same
If I had PMR and had pain, I’d be forever worried that it might develop into GCA if left to cook. I’d also have a very good look at my lifestyle to see if anything there is pushing my body to go into a state of inflammation. I’d also question whether the background pain is causing me to live a less healthy life in terms of activity, sleep and happiness.
Wow I never thought of that (GCA). Thank you for bringing that up. Needless to say I don’t want that to happen! As for lifestyle ... I do enjoy a couple glasses of wine now and again. I think the alcohol could be interfering with the steroids. I am also curious about another thing. I live in Finland and I visit the sauna at least three times a week. I’m starting to wonder if the hot temperatures are in fact good for the inflammation. Going to ask my doctor.
Hi Fin70
I love the sauna and get great pain relief when in them, I agree with Sheffield Jane if left pain intends to get worse. I have had 3 flares over 18 months each time going up from 5.5mg to 10mg for a while to get rid of most of the pain
Thank you carolBF! I am going to start really hydrating myself after the sauna. I’m wondering if that might be the problem because people in general say it brings them so much relief! I also think that a bad night sleep can increase the inflammation. I am stuck in the 5 -7.5 mg loop. I just can’t seem to get past it.
Not everyone gets relief from the sauna. I think I preferred the steam room but I didn't use either as much as you are used to. As for wine - I've had it in that case! But honestly - it doesn't help me if I stop drinking. In fact, before pred I felt best in the evening after a glass of wine - vasodilation!
Carol how long did you stay at 10 after a flare..how quickly back down. I have gone back up with my first FLARE after two and a half years am back t 7mg. from 1.5 ...
I took 10mg for a week now on 9mg for 3 day then 8mg for 3 days then a blood test x
I think lots of us have a little bit of alcohol with no effect. By lifestyle I was meaning more about over doing it mentally and physically. Moderate doses of Pred and even lower doses can make one feel that one has more energy than we actually have.
I spoke to two different consultants about the risk of GCA if I didn’t take the steroids. They said it didn’t put me at increased risk. They said that if GCA is going To appear, it’s going to appear. I’ve had PMR for over three years now and don’t take the steroids.
Have you noticed that this thread is over 3 years old?
Hello! Wow, has it really been that long? Unfortunately, three years on, in addition to PMR, I now have a diagnosis of non-radiographic Ankylosing Spondylitis. Fortunately, I have found a medication that treats symptoms associated with both diagnoses relatively well — if I even have PMR. According to my rheumatologist, the spondylitis could be causing PMR-like symptoms? Anyway, I don’t have to take steroids anymore which is good. ❤️
You are still around then! Good to hear from you - even if you have something else rather than the PMR went away. I usually only point it out if I'm not sure there will be an answer and people might be disappointed,
Now you see - if they decided on AS, I would be more inclined to say it was instead of not with PMR as it really can cause very similar symptoms.
How did they decide it was AS? And what are you on? How good are you on it?
Speaking purely for myself, I understand that the aim is for 70% relief of the original symptoms and that's what I aim for. I am aching a lot of the time but it's tolerable and certainly doesn't stop me doing anything I want to do. I think we're all keen to taper as much as we can but I value quality of life over worrying about reducing steroid dosage any more. I don't remember reading on any other posts that a GP recommends a high enough dose to completely relieve all pain. My GP has been understanding but very much leaving me to my own devices which sounds like a good thing compared to some of the horror stories I've read!
I agree, there is a balance. It is true that not everyone gets complete relief. It’s quite hard to describe the difference between being aware that you are unwell, in the background and symptoms that seem to be ‘ active” and gradually worsening. There is always a certain amount of intuition in dosing. My confidence has taken a knock in developing GCA after tapering to 3 mgs over 4 years with PMR. This may have been inevitable anyway I guess. I think it was caught at an early stage though. The forum made me super-aware.
I’m sorry to hear that SheffieldJane. And thank you for sharing your story. To be honest I’ve not thought much about GCA. Based on what I’m reading here I think I should be more aware of it. For example, as silly as it may sound, I had no idea you could develop it so late in the game. Thank you for bringing this to my attention.
I can only speak from the GCA perspective...and the last time I let some pain ride and still tried to 'hang in there', it cost me more of my visual clarity in my right eye. So I guess my general feeling would be...pain in and of itself serves no purpose other than to alert us...it just isn't the kind of thing you can 'tough out'. Be well...xo
Thank you for your reply scrambledegg. I wholeheartedly agree. It’s best to have a doctor who lets you make the call. Mine ultimately does but in my opinion he’s a bit heavy handed with the steroids. My pain really is more of a continuous light ache and for the most part tolerable. I wouldn’t refer to it as a flare up for example. I think I’ll carry-on with my current dose unless there’s a surge that makes life difficult. When I need support standing up from the kitchen table, then I know it’s time…
The 70% figure is only as the global response to the starting dose - if that doesn't happen fairly quickly then a higher dose should be tried. It it doesn't happen to a dose of up to 25mg then it should be questioned as to whether this is PMR as we talk about it here and further investigations initiated. And that is a reason to refer PMR to a rheumatologist. I have come across doctors who say it can't be PMR unless there is 100% relief of pain or who will increase the dose to GCA levels in an attempt to achieve total freedom from pain.
Once that starting dose has achieved AT LEAST 70% global improvement in a week or two then you should be looking to see how much better it gets - i.e. remaining at the starting dose until the blood markers are low and stable (if that applies to you) and the symptoms have also improved as much as it seems they will in a couple of months maximum. That is your guideline - you should never get to feeling worse as the result of a taper. And I found it took several months for some pain to go - the hip bursitis and the hand and foot pain did take ages to go.
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Your doctor's approach - once you get to a pred dose that is slightly too low and leaves a bit of inflammation each day it will build up over time. I shall invoke my dripping tap analogy: however slowly the tap drips it will eventually fill up the bucket you are using to catch the water. It will only not overflow if you are scooping out at least as much water as is dripping in.
Longterm low level inflammation is causing damage to the body tissues and is believed to predispose to other diseases including some cancers. In PMR/GCA it probably also causes damage to the lining of the blood vessels and that can develop further to cause peripheral vascular disease.
Wow this is very sobering indeed. Thank you for this information. So, do you think it’s best to find a dose where you experience no pain whatsoever or hardly any at all? I go about my day just feeling some mild soreness as though I’ve been to the gym the previous day or something. If I go up 2.5 mg it’s gone. But then on the higher pred dose I notice an increase in insomnia, bloating, palpitations, hot flashes when I eat which I’m guessing are connected to blood sugar problems (well, that and menopause.) On the lower dose I have the mild pain but fewer pred symptoms. Such a nightmare! Please advise if anything comes to mind!
Any chance of going up less? You would be amazed the difference 1mg can make! Even 1/2mg sometimes - I wrote a post over 10 years ago called "What a difference 1/2mg makes" - and that was 1/2mg over 2 days! There have been a few similar posts in the last year or so.
Thank you for this suggestion. I am going to try this. I believe in Finland we can’t get prednisone in tablets of less than 5 mg. So I think I’ll need to invest in a better pill-cutter because even cutting them in half is tricky. But this will be an interesting experiment as I’ve never stepped back up to anything under 2.5 mg. Half a pill in other words.
You CAN spread the dose over a few days - even Prof Dasgupta, the UK GCA guru, suggests reducing by taking two days old dose, one day new dose but that is with 1mg drops.
The DSNS taper (first link in the post linked below) has worked for drops of 2.5mg, and so has the Dorset Lady version
healthunlocked.com/pmrgcauk...
As I explain, you can stop at any time if the next step feels a bit too much. So you could maybe take the higher dose every 3rd or 4th day (or even less often) and find that this keeps that bit of inflammation under control.
My friend in Sweden said the same thing she can only get 5mg. tablets. This is totaly unacceptable!! what on earth will you do when you get to 1mg. or .5 it's crazy. BUT I have to say, that is the ONLY thing that is CRAZY about FINLAND. Bravo on your covid-19 approach, your maternity paternity approach and your school system! and your TANGO dancers!!
Sorry to take so long to reply to this. I’m American and have lived in Finland for 12 years. I can truly say that it is a societal utopia —and I’m especially glad to live here, now that I have this illness, which has had such a huge effect on my life! (I was 48 when the first symptoms appeared. The week before they came I ran 10 km and swam in the ocean, pain-free. Within a few days I was contemplating the use of a wheelchair at the mall. 😔) I’ve been so fortunate to have access to top-notch treatment here, and needless to say it’s free. (I didn’t even have health insurance in the US.) But I have to say, this business with 5 mg of steroids being the lowest dose available is extremely frustrating and I fear it is hampering my tapering progress. I would like to go down, down, down very slowly but it is nearly impossible. I just end up with a powdery mess in my pill-cutter. I wonder how others cope. How has your friend in Sweden handle this problem? All the best to you! 😊
Here in Italy we have compounding chemists - the pharmacist in the village will take a batch of 5mg tablets, grind them and make up personalised doses in capsules for a small charge. My husband has had 2mg doses of warfarin/coumadin made up for years, 2.5mg was too much to keep things stable. Is there anywhere like that in Finland?
Part of the reason behind my developing the Dead Slow tapering approach was for patients on enteric coated pred which cannot be cut and 2.5mg was the smallest dose available at the time. It has worked for quite few in that boat.
Thanks, PMR pro! I have been meaning to look up posts about the DS method. I’ve seen it mentioned numerous times and I am curious as to how it works. I haven’t seen a compound pharmacist here. They have become very popular in the US. I am sure they have them in Helsinki but not in the remote town where I live. But I travel there occasionally so it’s definitely worth looking into. Thank you for bringing it to my attention! I didn’t realize you lived in Italy. Please feel free to say where but no pressure. I love that place and am part Italian myself. I particularly love the city of Bergamo and have a special connection with the place. I was heartbroken to see it hit so terribly hard by the virus. I can’t wait to go back there someday and visit all my favorite spots. Take care and be well!
I'm in the other lot of Dolomites - north-ish of Venice - and live in a valley where one side of the road is officially Alps with the Dolomites starting the other side. We bought our appartment over 15 years ago and have been here full time for well over 10 years now. Not too hot in the summer, not too cold in the winter and usually not too much snow down here in the high valley though last November was interesting for a few days! German speaking region, with more Ladin valleys too.
I think this explains it - but if you don't understand anything or think I'm mad, just say ...
I brought her 1mg.s when I went to Sweden. although I will deny!! haha. I envy you living there. We stay in Sweden for about 8 weeks 2x a year..but alas that will not be happening. I am glad, I suppose, that we are here for covid+19 although US is worse than Sweden now...but we live in a State that is NOT going up. so that is good. Good luck finding some way to cut your pills. Perhaps PMRpro has set you on the path..to find a pharmacist who can do it. !! I hope to visit Finland the next time we go to Sweden. My best friend when I lived in France for a year when I was 18 was a Swedish Speaking Finn from Helsinki..although she married and stayed in France (I was SO jealous!!)
I'd not thought of the implications of long term low level inflammation damage before. I have just spent 2 months on a very slow taper down from 10mg to 9 mg a day. I was slightly creaky but functioning fine at 10mg. Now slightly more creaky but still functioning Ok at 9mg. So at 10 mg I already had low level inflammation and now I've upped it a bit more. I'd been at the same discomfort level for 4 years (with a few unsuccessful attempts to taper) on 10mg and I'm now feeling that on 9mg the discomfort is at a stable if increased level. Maybe this wasn't such a good idea?
On another point, like Fin70 I had no idea you could develop CGA so long after a diagnosis of PMR. I thought I'd escaped the chances of that one.
Unfortunately not - we have a had a few cases in recent months where GCA symptoms have shown up years after a PMR diagnosis.
I am still at above 10mg after 15+ years of PMR - currently 12mg. I try less every so often - and other cardiac problems definitely get worse although the PMR itself is livable with. The cardiologist feels the arrythmia is linked to the PMR in some way. But getting to speak to her at present is like hoping for the moon!
Is this a view which other cardiologists hold? I'm at 12 mg trying to reduce slowly after a GCA flare and on the first week below that, with two days on 11.5 on a slow taper, I've had more SVT episodes than I've had for months.
Always be vigilant. I developed GCA after three years of PMR and slowly getting down to 1mg Pred without any flares on the way. Big shock, and frustrating to go all the way up to 60mg Pred, but I'm doing just fine 
Some rheumatologists (Quick and Kirwan) even suspect that rather than being damaging, Pred might actually have a protective effect re cardio things, but they don't know that for sure.
I know in my own experience, having yo-yo'ed the dose of Pred over the last 8 years, including coming off it entirely and then having to go back on, that every time the dose is too low and the inflammation builds up again, I end up having to take an even higher dose than I was on before. I'm coming to the conclusion it might be better just to accept I'll be on a maintenance dose for a long time or even forever. 5 years ago I was on a maintenance dose of 5 that I just could not get below and I wish I'd known then what I know now and just stayed there.
Interesting. I seem to be stuck on 5mg. I’ve tried to reduce to 4.5mg three or four times using the DSNS method over the last 7 months or so but to no avail so I’d already decided myself to stay where I am just now. Seems from your experience that that might not be a bad idea!
I've been taking pred for 20 years -initially for PMR now with GCA - and have never successfully got below 5mg. I'm now aiming for 5mg as a maintenance dose. I was heading quite close to that when a GCA flare took me back up to 15mg last year.
That is a really common experience. It seems particularly marked if you have had things controlled and then go too low because the rheumy wants to look at symptoms or do a test so symptoms return. If I ever get to 5mg again I'll stick!!!
I think that's the strategy I'm looking at now. I will give the DM injections a bit longer, see if I can get CRP down to normal and if they won't let me continue on injections long-term go back to a low dose of Pred forever. Hopefully with SM on my case now life will be easier.
You've had descriptions of lots of different experiences here. This is mine. I had 100% relief of all symptoms when on 15 mg pred. Had I aimed to maintain that I would never have been able to taper much below 10. I had (have) other causes for chronic pain, mostly connected with osteoarthritis, but also the add-ons which came with PMR but could be alleviated with physiotherapy, or heat, etc., and didn't need increase in pred. During my five years on pred I had several different experiences including a flare induced by my doctor suggesting I use up my tablets, stop and see what happened, and my stupidity in trying to taper to 0 at that time. It has taken me three years since then to actually taper to 0. During all that time I had a simple rule, if any initial increase of discomfort from a new taper (at this point always no more than .5 mg using dead slow method) did not start to resolve as I passed the midpoint of the taper, then it was too soon and I would return to the dose. Most of those years it was 2 or 2.5 mg. And it is important to never feel worse at the end of a taper than you did at the beginninng of that taper. Which is why a method like Dead Slow Nearly Stop is so useful. You can usually tell how you are doing at all times. There is also the added complication that the disease can fluctuate in activity. I think some people have more problems with this that I did, but I certainly did experience the occasional days when I felt worse because of stress. My answer was stress reduction, but that's not possible for everyone. People who are working or have caregiving duties at home, or similar, may actually need a slightly higher dose of pred just because their stress level requires a tad more cortisol to deal with.
The aim always is, as PMRpro and others tell us all the time, not to get to zero (although you will eventually) but to achieve the lowest possible dose which gives you as close as possible the original relief you felt (I explained above why that isn't always entirely possible as it's not always just about PMR).
Good luck!
Wow there’s some great sounding advice here from very experienced PMR GCA people. I’m a newbie so cannot add much at all. However four weeks in, I do notice some small amounts of pain creeping through (mornings especially) if I’ve overdone things physically the day before. It’s so tempting to try and get your old life back when you are on pred and feeling better than you have for the past six months!
I know what you mean. It’s a little like stopping anti-depressants because you’re feeling like yourself again. But it’s because of the meds! Been there too. 😞
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