My SED rate was the lowest EVER 3!~! so I thought I should to taper again since I have been on prednisone for 4 years. I was at 2 so dropped slowly... not DNSN but slowly to 1.5 and when I was at 1.5 every other day bang! terrible biceps pain, and shoulder pain and low neck, felt EXACTLY like original PMR , I would know her anywhere! so now I have gone up to 5mg for the last two days... and already feel 75% better! arms and shoulders. My question.. which I know you all have answered countless times.. is how long should I stay at 5.? I want to head back to 2 where I felt fine... so fine that I tried to lower.!!! and stay there for a couple months at least. ... and how to taper from the 5 back to 2? thanks. also think I can get my 4th Pfizer in a week. should I??? it's been 5 months. and omicron is rampant where I am. Photo just to show how GOOD I felt at 2mg. with my jolly tights on!
FLARE. ugh.: My SED rate was the lowest EVER... - PMRGCAuk
FLARE. ugh.
I would stay at 5mg for 5-7 days, you should then be able to drop to 3mg without an issue.
Then at that dose for a month before you try reducing again...maybe 2.5mg rather than 2mg, and stick with the 0.5mg reductions (if that's possible as you are in US and I know Pred comes in different doses to UK).
I think your 1.5mg alternate days was your downfall...I know some doctors and tapers suggest it, but personally think not a good idea, even at low doses (maybe when to get to 0.5mg to zero). It doesn't sound much, but as we all know alternate days confuse the body, and in PMR 0.5mg can make a huge different, never mind 1.5mg
my alternating was 2 and 1.5, 2 and 1.5... I should have been clearer. but still too fast I guess. ... DSNS next time.!
Maybe I misread that, but advice remains the same to get back on track. You are so low, so no need to rush it and fall into the finishing tape in a spectacular if embarrassing heap! 😉
hahaha. well said. !!
Mmmm - but going straight to alternate days 2 and 1.5 is quite a change from day to day. Slow it down ...
If you’re in the US try getting a prescription of 2.5 mg in addition to 1 mg and consider trying 0.25 mg drops. Even if get to 1 mg they can easily be quartered so can stay at 0.25 mg reductions. I tried to speed it up also and flared. I’m back to DL’s 5 week plan and working toward 1.75 mg, this is week 2. Fingers crossed no problems yet.
I love the photo! I don't have anything further to add to DL's useful advice especially since I've never had to handle a flare myself so far. I have been reducing my dose using the DSNS method from 3.0mg down to 2.5mg and then down to 2.0mg (I have not stayed on 2.5mg longer than 1 week) and having reached the alternating days (2.5mg and 2.0mg) I noticed a familiar hip discomfort at night and more than usual pain in my upper arms. I assume some of this pain is entirely unconnected to PMR (more likely to be caused by my Pilates lessons and Christmas holiday walks with a rucksack on my back), but I decided to extend the period of alternating days while I wait for a moment when I will know that I feel well enough to take the next step. It seemed prudent to do this given the challenges of Christmas and the latest worries with Omicron as well as the period when I was not going to bed as early as I should have been or doing my usual daily exercises.I know that a lot of people worry about vaccines and PMR, but personally I would take any as soon as it is offered to me since even though I've had a rotten time with the first AZ vaccine and even worse, more recently, with my Moderna booster, none of the vaccines had any noticeable effect on my PMR and so far I remain free from Covid even though I travelled to work on London transport for a few months at the end of last year.
I hope it all settles quickly and you go back to the very low 2.0mg. Vx
Please be careful. You will see from my reply to Yogabonnie that I made similar assumptions and have paid a fairly hefty price. PMR is devious and seems able to fool those of us with other pain conditions.
Thank you. I am not in a rush and am observing my symptoms closely. So far no reason to go up, but also I don't feel ready to take the next step down. This is the whole point of the DSNS method, to stay on any step as long as necessary. 😀
Yes, but as I said, I did use the DSNS method, ascribed my symptoms to another condition, and turned out to be wrong. 🤷♀️
I really hope that you are really on the road to recovery. It's what we all want for ourselves and for others.
Oh dear, this gives me a flashback to 2020! As I've described a number of times I took an entire year to taper from 2 to 0, in .5 mg steps, and doing each stage of each taper twice. I could not have done it more slowly without actually stopping! I believed I was fine. I blamed any pain I had on osteoarthritis. Within a couple of months I was back on pred. I have never been able to be at my old best lowest dose of 1.5 since. I did manage at around 2-2.5 for most of the rest of 2020, about five or six months. By then my right shoulder was so bad in some positions there were things I dreaded doing. On spec, I took an increased dose of pred. Miracle! Since then I've had to accept this shoulder issue is related to PMR although referred pain from arthritic neck no doubt contributes. I hate to tell you, but I spent most of 2021 reducing to my current (nearly, not quite sure yet) 3!
I will add that your experience with an excellent blood reading is going to be an object lesson for me. I had never had really good ESR or, as using now, CRP, until the last few months. I must be careful to focus on symptoms, not on an encouraging number.
The takeaway for you from my experience? The temptation to drop too soon, too far, too quickly, is always there and must be resisted. If PMR and pred have taught us patience, this is Patience 2.0. Good Luck! 🍀
i’ll post this here because can’t see starting a new thread. Why is it no one has considered doing 0.25 mg decreases? I can’t be the only one who has ever considered doing this. Until get to 1 mg the 0.25 mg decreases can be done my cutting 2.5 mg and 1 mg tablets in half on the scored line. It only a minor challenge if cutting a 1 mg into quarters and using a decent pill cutter it’s easy. Results in a much smoother reduction.🤷🏼♂️
I know others have done this, and I've even read of one or two people who have some sort of special scales and weigh out practically by the molecule! Personally I have never felt the need to reduce my taper by less than .5 mg, using a slow taper not overnight drop.
But why wouldn't you start a new thread? A reply to me isn't going to get much traffic!
Yes ! Quarters of one mg tablets. That's what I do. I just snap them .
Just seen this Boss, and no, I hadn’t thought of 0.25mg drops!! But now you’ve mentioned it, I can see it may come in handy…..thank you 😊
Great photo! It is amazing how much tiny doses of Pred do. I must remember if and when I get there. I think that with such a dramatic reaction I would be tempted to wait the maximum of 10 days before dropping back to 2 mgs. Then I might actually be tempted to stay there ad infinitum - indefinitely as recommended by Prof Dasgupta. Good luck Bonnie!
is there a link to Prof Dasgupta___???
and THANKS!!!
It was quoted in a podcast about 18months ago organised by the charity, so link may be about somewhere - but where??
EDIT -
This may be it - it’s about an hour so I’ll let you trawl through it! youtube.com/watch?v=WnL5RgE...
Or it may be something complete different….let me know please either way and I’ll bookmark it for reference!
thanks DorsetLady! I will watch today or tomorrow and report back.
I think this is different. This is about SED rate and CRP rates. but this was interesting anyway. about blood tests. etc. at. 43 min.
Ok cheers….I have another look through, trouble is I think it might have been a bit of a throw away remark in the podcast - so title probably won’t be a lot of help in finding it.
thanks. that's okay.. got lots of good advice here anyway. thank you. your dedication to this site is so so so admirable!!!!
I see you have had good advice already but I'll just add this. Before Covid came along I was stuck at 3mg. My doctor wrote to rheumy who said that dose is low so ok to stay at that, which I did for over a year. Then I decided to use the dsns method to get down another ½mg which worked out ok. Next step I went ever slower than the dsns adding on extra days etc. Happy to say I finally reached 2 and now occasionally 1½mg. Cautious but happy not to have a flare so low. I'm sure you will get back to dose you were at, just slowly slowly 👍 Good luck
I have just been sent some info that suggests a correlation with Pfizer booster shots and onset of PMR. I had my booster (third Pzifer jab) at the end of November and had a reaction to it that I'd not had with the first two. Shortly after that I started with symptoms of what was then diagnosed as PMR. Interesting that there may be a correlation but I guess I'll never know if it was maybe just a coincidence or if there is anything in it. In New Zealand, we only have the Pfizer vaccination though I understand Astra Zeneca may be available later this year,
There has been much discussion on here over the years about the vaccine (any vaccine not just Covid) ‘causing’ PMR or GCA.
It’s not necessarily the vaccine per se, but it can be the final straw to an already under pressure immune system that finally triggers the disease.
As you say, you will never know….but you aren’t alone in that….stress (of all kinds), environment and genetics do all play a part.
Lighthearted view - healthunlocked.com/pmrgcauk...
I, on the other hand, had a flare of PMR symptoms with a repeat of Moderna - not a sausage with a Pfizer booster, in fact after Pfizer I felt better and have been able to reduce the pred
It certainly is a conundrum. I had a bad flare up, after my second AstraZeneca jab, actually, it was this time last year. So I was extremely dubious about the Booster, especially as I was tapering really well. I had the booster, which this time was Pfizer and thankfully, no side effects at all.
healthunlocked.com/pmrgcauk...
Me having a nosy - and helping hand! This is what Flutterbie57 wanted to say to YB but HU seemes to have hijacked it onto a really old thread !
"Going through exactly the same yogabonnie. Was expecting to be off Pred by end of January , then one night PMR struck again . As you say , there is no mistaking it second time around . But do be careful !!! I went to 5mg , felt amazing , rested for a day , then overdid it . I did this not once, but twice . I am now on 10mg and still not feeling without pain in neck area , lower back and temple . Doctor wants me down again . I have been back on here for 2 , 3 weeks again reading everything I can . I have decided to follow advice on here and hopefully I can get myself in a less painful state again . Just do be careful in those yoga tights . Small steps at a time , not silly Like me ."
VArious forums seem not to be on topform at present!
Thanks PMRpro . I think I am blundering around on here too. Off to bed before I make more mess
Don't worry about it - sleep well 
Good grief - it's just like reading my history! Happily down to 2mg (after 4 years) and then I had to go and push it, didn't I? 1.5mg a step too far. Took a bit to realise what an idiot I'd been (brain failure on top of everything else), back up to 5mg then slow reduction over 2 or 3 months - can't remember exactly - to 2mg where I have stayed. Very happily. And have no intention of reducing again, certainly for the foreseeable future. Hope you get sorted out quickly. Very fetching leggings by the way!
So sorry to hear of your setback Yogabonnie! Must be SO frustrating.
Lots of responses here that indicate others have suffered the same fate. Some folks seem angry and frustrated with themselves for “pushing their luck”. However I think that those of us on pred repeatedly receive messages from medical professionals (and perhaps others), that spout a clear and urgent need to get off pred ASAP. We internalize these messages and blame ourselves and our bodies for not cooperating.
Those of us stuck at higher doses feel like failures and have even more worries about long-term effects. We swear that if we ever get to 5mg or lower we will stay on that dose long-term. Some compare their dose to others which is never a good idea (like comparing bodies, intelligence, etc)…you eventually end up feeling “less than”.
It’s a terrible numbers game where PMR, the true culprit, reminds us it is in control. I am not refuting the long—term effects of prednisone, rather trying to put into perspective how dose and tapering can become all consuming and negatively impact our quality of life.
Try to be patient with yourself. Most of us get where you are coming from. It would do us well to appreciate when we are doing well at a certain (especially low) dose. The evidence shows much less negative impact/side effects at lower doses.
I know exactly how you feel yogabonnie. You were doing so well. I hope you can soon start to taper again. I stupidly thought I’d begun to crack it on 4mg pred for just over a month. Somehow I managed to get a chest infection and boy the PMR struck. Now on Antibiotics and Dr said to go up to 10mg. I’m so disheartened, I’ve increased to 5mg firstly, to see how I cope. I’ve certainly learnt not to be complacent about PMR, unfortunately it takes no prisoners . It was this time last year had a flare up. Good luck.
All medicinal avenues covered---JUST LOVE THE PICTURE, captured your spirit. 💖
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