”Average” Time on Prednisone Before Beginning Initial Taper

[Donna5658]

Hello to the community. I wondered if people could share their initial time on their original (first) treatment dose of prednisone for PMR? Is there an approximate/average number of weeks people stay on their initial (in my case) 15mg dose before beginning the long, slow taper? Does every last twinge of symptoms need to be completely gone before starting the taper? I had aches and pains in some of the same places long before PMR struck with a vengeance. I would like to start the taper next week per my doctor’s plan, but must admit I am not 100% symptom free. Probably 95% better, but not completely gone. Thanks!

[Koalajane]

my first taper happened after 4 weeks

[Donna5658 in reply to Koalajane]

Thanks! Were all of your symptoms gone? Did it go smoothly?

[Koalajane in reply to Donna5658]

no but 90% gone

[piglette]

Personally I think one should stay on the original dose for at least four weeks. My rheumatologis wanted me to reduce 5mg after three weeks and it was a total disaster. The rule of thumb is that the steroids should relieve the pain by at least 70%. Some lucky people get to the point of no pain but a lot of us do not.

[BethCH]

I started on 40mg in Feb 22 after seeing GP for classic GCA head symptoms. Had Rheumy appt 12 days later who reduced it to 30mg. I was not symptom free when I reduced, probably 50% if I remember correctly. With hindsight and knowledge from this site, it was likely too soon to reduce for me. Currently on slow taper of 17.5 following a couple of flares. Currently pretty much 90% symptom free this week but watching carefully as this seems to be the lowest level I can reach before more symptoms appear 🤞🏼. No biopsy done or raised inflammation levels at any time. Hope this helps for info.

[PMRpro Ambassador]

It ls probably fair enough to start tapering - I think the starting dose should be at least 4 weeks - and the taper steps should be SMALL, piglette's doctors 5mg was a piece of nonsense!

Personally, I think you should stay at the starting dose until the symptoms are well controlled and stable - and if they apply I would want to see the blood markers done to at least normal range but preferably pretty low and stable. You can't give a figure - some people's normal is 20, mine is low single figures.

Currently there seems to be an utter desperation to get you off pred practically before you.ve started and it never bodes well!

[Donna5658 in reply to PMRpro]

Thanks PRMpro. The only push is coming from me, not from my doctor. She wants me to stay on for 2 to 4 weeks after I am back to baseline. The problem is determining what my baseline was. My ms and lymphedema make this difficult to sort out.

[PMRpro Ambassador in reply to Donna5658]

When the markers are down and not falling further. That sounds hopeful - but I like your rheumy!!!

[Donna5658 in reply to PMRpro]

My CRP level went from 67 to 2.4 but haven’t had sed rate checked again.

[123mossie]

3 months for me, tried to drop after 1 month but pain came back. Tried again but no success for quite some weeks.

[Donna5658 in reply to 123mossie]

Wow, that seems like a long time. What was your starting dose? How have things gone since then? Have you managed to taper and still reduce your pain?

[123mossie in reply to Donna5658]

yes it was a strange thing. Started on 15mgm. After 3 months reduced by 2.5mgm monthly to 10, then 1mgm a month to 8. Then I found this forum, applied a bit of common sense and successfully tapered over 18 months or so. Took my last 0.5mgm yesterday. I had one glitch when I had a hip replacement in Jan 2021, I’d followed dr advice not to increase, had a flare. Soon controlled thanks to this forum! Slowly is the main point, allow the pmr to lead you as there is no other way. Good luck .

[SheffieldJane]

in my case it took a while to obtain a PMR diagnosis, my start dose was 20 mgs, I needed a full 6 weeks before I felt that all of the inflammation was under control. I got immediate remarkable relief from the most disabling symptoms but was always aware of some twinges, particularly if I did too much.I then began a dead slow, nearly stop ,type of taper, never more than 10% of my dose, as outlined on here in FAQs. I stopped if the symptoms seemed to be getting worse. After 10 mgs I went very slowly in half mg decrements to support my Adrenal system. At the present time my diagnosis is GCA/LVV, I feel that my PMR is in remission.

[Donna5658 in reply to SheffieldJane]

What dose are you on now?

[SheffieldJane in reply to Donna5658]

I got down to 3 mgs and then began feeling unwell, I had a scan and was diagnosed with GCA so I had to go back up to 40 mgs. With the help of Tocilizumab/Actemra I got to 10 mgs quite quickly and am now on 6 mgs, slowly creeping down. This has been across a 7 year period but I had bad luck.

[Donna5658 in reply to SheffieldJane]

I have to admit this has been my most challenging autoimmune disease thus far. Its two other competitors are multiple sclerosis and Grave’s Disease (hyperthyroidism), but PMR, with the specter of GCA looming in the background, is a real doozy. I guess we just learn to accept and adapt and regroup as we need to. It is hard to overstate the invaluable resource this group is. I would have been struggling around in the dark without the enormously kind and informative people who are here to help the newly diagnosed.

[YorkieShowBreed in reply to Donna5658]

I couldn’t put that any better. I am completely off pred after being on it 3yrs. I started with 15mgs and went down to zero in tiny increments until I was off last February. I have been of for seven months now and still have some slight pain and stiffness in the morning that goes away after an hour so it seems normal to me now. I still come to the site though to learn as much advice as I can. It’s just so marvelous and encouraging to me and I’m thankful for it. I had never heard of this disease before and neither had my doctor. I just Googled my symptoms one day and found out what it was and took the printout to him and he send me for a SED rate and it was 103. I was put on 15 mgs of pred immediately and the release was like a miracle I mean within a few hours. It’s quite astounding

[SheffieldJane in reply to Donna5658]

I agree with all that you say. Graves was my first autoimmune disease, it seems pretty tame these days. My grandma had MS, I thought PMR/GCA/LVV was it and felt relieved but I know what you mean.

[Donna5658 in reply to SheffieldJane]

Are the OCT eye scans definitive for GCA?

[Donna5658 in reply to SheffieldJane]

Are the OCT eye scans definitive for GCA?

[PMRpro Ambassador in reply to Donna5658]

I don't think they usually use it to diagnose GCA - only retinal disorders:

aao.org/eye-health/treatmen...

Theoretically it is possible:

ncbi.nlm.nih.gov/pmc/articl...

but doesn't appear to be validated as yet.

[Donna5658 in reply to PMRpro]

Thanks. So is there any definitive test for GCA? I know the biopsies are supposed to be definitive if you biopsy the right spot, but according to Kate Gilbert, these biopsies can easily miss GCA if the biopsy site isn’t correct.

[PMRpro Ambassador in reply to Donna5658]

Yes and no. If the TAB is positive - that is definitively YES. But if it is negative it only means they didn't find what they wanted to see and then they must go on symptoms and response to pred. You can't even really say "if the biopsy site is correct" as there are so many factors involved. GCA may not even affect that artery - it doesn't always, it is used not because it is always affected but because it is superficial and you can manage without it and it is sometimes affected. But even then, the bits that are affected aren't continuous, they are patchy, forming what are called skip lesions which may easily be missed.

GCA comes in 2 forms really - cranial and extracranial and biopsy will never show the extracranial sort. PET-CT scans will probably show the extracranial sort if the patient isn't on pred - but they aren't much use for the cranial sort because the brain takes up such a lot of the glucose marker that the signal swamps everything around it. Diagnosing is difficult.

This illustrates the difference:

academic.oup.com/rheumatolo...

[pata63]

I was started on Prednisone in April 2019. Dosages which worked for me, but might be a little quick compared to some people:

20 mg 1 month

15 mg 3 weeks

12.5 mg 3 weeks

10 mg 6 weeks

7.5 mg 3 weeks

6 mg 3 weeks

5 mg since mid Oct 2019

During the reducing period I never had symptoms nor a flare. That's why the reduction was continued at that pace. I tried to get down to 4.5 mg two times by DSNS but my body said "no". Sick as a dog and in bed for 10 days starting with extreme exhaustion and progressing to daily migraine headaches and extreme light sensitivity.

I'm back at 10 mg at the moment and starting the first week of tapering to 9 mg. This was after a flare which had my GP bump me back up to 20 mg, but when all my bloods came back normal (CRP 1 which is where it usually is) it seemed like it was stress related not a longer buildup of inflammation. So I've gone back down. I thought I was on 10 mg (on the way up to 20 mg) a bit too long to just drop from 20 mg to 5 mg so I'm taking it slowly getting back to 5 mg. I'll just be guided by symptoms. So far so good. 👍

[Pr0jection]

I was diagnosed in August 2020 and put on 15mg for 3 weeks, then reduced to 10mg for 4 weeks, then down to 7.5mg where I've remained since. I was pain free during this time and was in full working order within 4 weeks. 2 months ago I tried tapering 7.5/6.25mg on alternate days and felt reasonably OK. However my recent 2 monthly blood tests showed my CRP was elevated. I've decided to go back up to 7.5mg for the next two months at least and then see what my next set of blood tests in November show.

[Miacaro45]

I have been tapering for 2 years. I went from 80 mg to 6 mg of Prednisone. I did not do well at 6 mg so I went back up to 10 mg which helped. Then, I got a stabbing headache. Now I am up to 20 mg. I feel like a yo-yo. I believe that this will be my life. The important thing is feel well.

[Rugger]

My initial regime: 15mg for 8 weeks; 13mg for 4 weeks; 12mg for 5 weeks; 11mg for 2 weeks; 10mg for 8 weeks; 9mg for 5 weeks. Then I started the DSNS taper. I experienced my first flare at 4mg after a year, so back up to 10mg....... and so on!

I was never 100% symptom free, but my blood results (CRP & ESR) have always shown any flares of inflammation so my pred has been adjusted accordingly over the years.

PMR: 2016

GCA-LVV: 2019

2022 off pred, having had 2 years of Tocilizumab (Actemra) and now on Methotrexate to try and prevent a relapse!

Best wishes.

[mloyuken]

18 months ago I started with 40 mg, 4 weeks later 30 mg, 4 weeks later 20 mg, then 15 mg. Then he wanted me to taper 1 mg per week. I convinced him the forum suggested a slow taper, so I went to 1 mg less per month, until at 10 mg I started 10 % reduction each month. I followed the 10 % rule each month following Dorset Lady's slow taper method modified to 4 weeks. I am now 2 weeks at zero.

[TheMoaningViolet]

15 mg for 3 weeks. Symptoms were gone, but this is very individual.

[Boss302Fan]

i was started at 80mg, dropped to 60mg in 2 days, then every 4 weeks. I switched to DL’s simple taper at 20mg and the issue wasn’t so much how long I waited, but the magnitude of the drop, i.e., 2.5mg per drop until 10mg then step was 10% of current dose which was able to do until 2.5mg dose when the minimum I could drop was 0.25mg which I used to zero.

If I experienced ANY “PMR” pain at any given dose I did not step down, I extended it another week until I had 1 full week at that dose with no pain. If pain increased any whatsoever, I went back to the old dose. This was regardless as to what the Rheumy wanted me to do. Usually it was Thursday (day 5 of wk 3 of DL’s Simple Taper) that if I was going to have pain (flare). If it was a 1-2 on a 1-10 pain scale I would attempt week 4 schedule. If the pain was higher than that or started increasing I immediately returned to the old dose for at least a week before trying again. Sometimes using a half-step as the new dose.

It’s my humble opinion that it is illogical to reduce a dose if you’re experiencing PMR pain because this going to make things worse and it’s attempted out of impatience.

Sorry to be so blunt, but the pain is a result of inflammation, excess inflammation can cause muscle damage, and pred reduces inflammation. If person is experiencing pain due to PMR, then there’s insufficient cortisol available. Lowering it further is going to exacerbate the issue. That’s my 2 cents.

[Donna5658]

Thanks for your reply! My problem is in ascertaining what is minor pain I had had for many years before PMR struck (for example minor hip bursitis due to lymphedema from my cancer treatment) and what is due to my current PMR pain. Is it your feeling that one should have zero pain from any source because one is on prednisone or that a certain amount of very mild intermittent pain from earlier issues would be hard to completely eradicate even on 15mg of prednisone? I am unclear about this.

[PMRpro Ambassador]

PMR strikes at your weak points - and bursitis can be part of PMR too. Increasing pain as you reduce is a warning sign unless you know it is something totally different,

[dufferin52]

Mine was 6 weeks, but I certainly wasn't 95% improved.

[Albyn32]

I was diagnosed with PMR and on 15mg for2 weeks (symptoms less noticeable but still there.Then tapered to 12.5mg with symptoms still there. Due to jaw problems diagnosed with CGA and put on 40 mg. I stayed on that for 2 months before tapering. All symptoms gone at 40mg. Possible not helpful information as you are being treated for PMR and not both.

[Donna5658 in reply to Albyn32]

Thanks for replying. Information still helpful. How long was the interval between your PMR diagnosis and your GCA diagnosis? How are you now? Are you still on prednisone/prednisolone?

[Albyn32]

I must have had PMR for quite some time before it was diagnosed on 11/01/22 steroids 15mg. Actually my physiotherapist picked it up after getting me to do squats and star jumps which resulted in me not being able to move at all. Dropped to 12.5mg 21/01/22 resulting in jaw problems. GCA diagnosis 26/01/22 steroids 40mg. Had a hiccup at 10mg when ESR jumped up but that may have been due to catching covid. Back up to 12.5 for 5 weeks. Tapering slowly from 10mg to 9mg at present. Quite lucky really. Haven't had too many bouts of fatigue yet, but as I'm retired I don't work. Can manage to play golf 3 times a week and do some stretches and a bit of swimming. The high dosage of steroids was the worst time. As they have reduced I can get some sleep and consequently have more energy..

Hope your condition is also improving.

[Groovykindoflove1992]

I was on 20mg for 2 weeks and had 100% relief. I was then told to go down to 15mg. I wish I had stayed on 20mg for 4 weeks and then gone down to 17.5mg as all my symptoms were back with a vengeance after 3 days 😖