Hi everyone! I’d appreciate your comments on the results of my Pred tapering so far, after just 5 weeks after PMR diagnosis. My original symptoms were - hip girdle and upper leg pain, and neck pain (base of skull). No other symptomatic areas.I started on 20 mg for 2 weeks, and then dropped to 15 for 2 weeks (my rheumy had said to drop to 12.5 from 20 mg, but I went to 15 to taper more slowly). All went well - my hip and upper leg pain have gone away and stayed gone, but my neck pain has been more stubborn. At 15 mg, my doctor gave me some muscle relaxant, cyclobenzaprine, to help with the neck pain, and for a few days my neck didn’t hurt while I was on 15 mg, and for a couple of days at 12.5, still no neck pain.I’ve been on 12.5mg for 6 days, and my neck pain has returned, but is very tolerable. Plus, very minor hip pain returned, but that subsides mid day, and it is tolerable, i.e. I can still do all physical activities, including 10k steps. Still talking the muscle relaxant. Question: do I stay on the 12.5 and strive to reduce to 10 mg in 8 days, even if my neck is still sore? I’m reluctant to go back up to 15mg because of neck pain. Shall I (1) stay on 12.5 until the neck pain resolves, even if it is for a long time; (2) go back up to 15 mg to get my neck pain resolved and then go back down to 12.5, or (3) continue on 12.5, and reduce to 10 mg despite neck pain, as long as the pain is very tolerable. I’d appreciate your guidance. My doctor just gave me varied bottles of prednisone at different dosages and said, “get down to 10mg as soon as you can, then reduce by 1mg per month”, and barring the unexpected, you should be able to attain zero in a year. I don’t know what are the key indicators that it is time for me to reduce. I’d appreciate the insights of you professionals! And thank you very much!Canada
Question about Prednisone tapering - 5 weeks with... - PMRGCAuk
Question about Prednisone tapering - 5 weeks with hPMR
"barring the unexpected, you should be able to attain zero in a year."
I have no idea what world HE is living in but it isn't ours! Only about 1 in 5 get off pred in a year - and they tend to be at a much higher risk of relapse. About a third are off pred in 2 years, some of us need a lot longer.
That is an extremely fast reduction of the dose and if you continue at that pace you are likely to end up back where you started. My suggestion is you remain at the dose you are at for at least 3 or 4 weeks and see what happens with those symptoms that you already are noticing. If they go away, then aim for 10mg but the same will apply there if you get there - wait at least a month to be sure the symptoms don't start to build up. Otherwise you run a real risk of ending up back where you started - and when that happens, it is often far harder to get under control again.
Thank you! I REALLY appreciate your comments!
I agree completely -- SLOW--I would suggest if you could inform your tapering with your ESR and CRP blood tests-- my tapering is going more smoothly with this information before I taper.
I’ve only had one lab test done which was at my request, and confirmed my personal diagnosis of PMR a few weeks ago. With the results, my PG finally believed that something was going on with me and confirmed the diagnosis. My numbers were very high (I think, but have no comparison). I’m getting labs done on Monday, so I’ll have something to compare. How often do you get labs? It seems that I’ll be he one pushing my Dr for labs. My rheumy saw me once a week ago, and wanted me to have labs done in late December, and to see him in January. I pushed to have at least one more set of labs done sooner to check my blood sugar (I’m pre-diabetic). I would think the lab results would make it much easier to figure out the tapering!
There are no blood tests that CONFIRM a diagnosis of PMR - only indicators of the presence of inflammation which add to the wall of evidence but even they are not reliable as up to about 1 in 5 patients don't have raised markers. Symptoms, their presence or absence, are far more reliable and should even override blood tests.
Early days with GCA I had my bloods done a few days before I met my GP to discuss reducing -but they were only used as part of the process -how I felt was more important.
My taper was reviewed on a monthly basis -and have to say this was long time before Covid (when everything about seeing a doctor became more difficult) - and my GP was extremely cautious about things. If you read my story you’ll know why.
As we are always saying, although it’s good to have a baseline, lab results are only part of the whole tapering/treatment process -they aren’t the only thing to consider.
It only works for some - my ESR and CRP were never out of normal range, even before diagnosis and it delayed the diagnosis by 5 years! For others they aren't that sensitive - and meaningless for anyone on Actemra.
Hi, and welcome,
Agree with PMRpro's comments...
Personally I would go for option (2)...and stay on each dose long enough (3-4 weeks, longer if necessary) before reducing...
and just keep your eye on "I can still do all physical activities, including 10k steps."... That may be applicable at the moment, but may not always be the case.
Maybe have a look through this information post -healthunlocked.com/pmrgcauk...
.. and have a look at FAQs -
healthunlocked.com/pmrgcauk...
Thank you, DorsetLady!
I have discovered through experience if you are starting to have niggles compered to how you felt when you first took the steroids and they worked, DON’T reduce until you feel the same as at the beginning. PMR is very cunning and can creep up on you unless you watch out.
I flared during my first taper by following the ill advice of my first rheumy. I started at 20, was told to drop to 15 then 10 with only 2 weeks in between. So I went back up to 15 for 6 weeks to ensure all the inflammation was cleared out. Then I tapered every 4 weeks the following: 15, 13.75, 12.5, 11, 10, 9.5, 9 (got stuck at 9mg for over a year despite multiple efforts to get to 8.5).
My journey on pred has been over 4 years now as I continue to taper with the help of Methotrexate as a steroid sparer. No way I could have been off pred in a year! Despite your rheumy’s plan, PMR has a mind of its own. Slow and steady is the advisable way forward. Often adjustments are needed along the way, especially with regard to physical activity.
All the best and I hope those “niggles” reduce, however it is your body telling you something.
Thanks so much!
Hello, how have you found using the Methortrexate ? Looks as though I will have to succumb to using it
I've been on Pred for a year. GP is desperate to make me reduce by 1mg every 4 weeks because it's in the guidelines and that seems to be all they're bothered about. A lot of them think it's a one-size-fits-all scenario but it doesn't seem to be from my perspective.
I started on 15mg and was tapering nicely along GP's prescribed 4 weekly 1mg step-off-a-cliff-edge weaning path. I started to notice the niggles coming back at 7mg and ignored them. They got worse at 6mg, worse again at 5mg, and at 4mg I crashed right back to square one (bearing in mind I was dropping by a full 1mg every 4 weeks). I couldn't contact the GP as no one answered the phone despite my trying all day one Friday so I took the law into my own hands and went up to 10mg for a week, then tried dropping back to 5mg again on docs advice. I crashed again and went back up to 8mg on my own initiative. I'm still here on 8mg three weeks later, feeling a good bit better and intending to stay here for at least another 3-4 weeks or until I stabilise fully before attempting another taper, but this time I'm going to do it more slowly. I haven't made up my mind exactly how I'd like to do it yet but I rather fancy the "dead slow and almost stop" method and tapering by only 0.5mg at a time rather than by 1mg, but I know the doc will put up a fight about that as all she wants is for me to get off the pred.
The main point of this as far as I can see is not to follow some ill concieved one-size-fits-all guideline which takes into account only targets and box ticking stats to make medical professionals look good, but to follow the messages your own body is giving you and interpret them accordingly - that can be the difficult part. Only you can make the interpretation and it's SO easy to go into denial and ignore it when the pain starts coming back. So from my own experience I recommend you watch those niggles closely and don't ignore them.
There's a good analogy I saw somewhere on here which compares the body to a bucket filling up slowly with a dripping tap of inflammation where the pred is the outlet at the bottom to let the inflammation out and stop it overflowing. If the outlet is too small the bucket will eventually fill up and overflow. I think that's about the best analogy I've come across.
I was also taking my pred at breakfast, again on GP's advice, but I'm now considering starting to take it in the middle of the night as it seems to be the most sensible way to kick the morning stiffness into the long grass if the pred is there working in the system when the inflammation starts to raise it's ugly little head just before getting up time. There are a lot of posts on here from people who already do that and it seems to work well.
Dripping tap - PMRpro's analogy...
Slower tapers (couple attached)- and yes only 0.5mg a time from now on, a year in (despite your doctor's view) PMR still very much alive and kicking -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Thank you..🙂
You reached the dose you needed originally at about 7 to 8 mg - that return of pain at 7 was your notification to stop. Maybe adding 5mg to that would get things cleared out sooner?
Yes - Prof Sarah Mackie in Leeds like the dripping tap analogy too
Yes indeed. If I had been more aware at the time of how PMR actually behaves I would have taken heed and probably shifted back up to 8mg as soon as I noticed the niggles, but between my own ignorance and pressure from the GP to reduce I just kept on going.
I'll be a lot more aware this time round and if those niggles return I'll act accordingly.
I think it is probably the hardest thing we have to convey to patients and doctors - the underlying autoimmune activity that causes the symptoms we call PMR is in charge and must be accommodated. Doctors so often don't want to know - and it defeats me as to WHY they don't understand that the human body isn't a machine! There are some superb doctors around who DO get it - but they are few and far between!
“GP is desperate to make me reduce by 1mg every 4 weeks because it's in the guidelines and that seems to be all they're bothered about.”
Actualy guidelines say this - which may like to quote -
PMR guidelines - tapering
The suggested regimen is:.
Daily prednisolone 15 mg for 3 weeks. Then 12.5mg for 3 weeks.
Then 10mg for 4–6 weeks.
Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)
**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes
.* note the comments - these are just guidelines, not everybody is able to conform.
I don't think they read the rest ...
We know they don’t !
I think if I were you, I would try Ibroprofen, I had same and it worked for me. May be worth a try before increasing Pred.
Need to be careful taking ibruprofen (NSAID) and Pred -both can cause stomach issues.
agreed but could be neuralgia and Ibprofen should be ok in the short term. That is what my doctors told me.
Yes, it could be neuralgia-and long as it is short term…
Hi, good advice given already. Your gp is over optimistic but has given you a range of strengths of pred, which I’d interpret as giving you permission to self manage. With the help of the forum that’s hopefully doable. Good luck, go slowly.
Inwould also add that neck pain can absolutely be part of PMR. I wouldn’t be taking a muscle relaxant unless you knew you injured your neck. Otherwise it’s likely the PMR saying your dose is too low.
Thank you all, this forum and all of you available to help us newbies through this condition is really a life saver! I’ve adjusted my dosage - I went back to 15 mg yesterday and my neck niggle is faded significantly as a result. I’ll use a plan DorsetLady gave above, taking more time to successfully reduce from 15 to 12.5. Yes, both the doctor and I want me to be off of prednisone ASAP, and I have it in my mind that I need to get under 10mg as soon as I can in order to avoid some of the side affects of prednisone. That said, I’m learning that an unsuccessful taper done too eagerly may get me a “go back to jail” card, and I’d like to avoid that! 😆
You just need to remember and accept that neither you nor the doctor can dictate how much pred will be needed to manage YOUR level of inflammation. And rushing at it will result in a relapse, delaying the taper at best, sending you back to the beginning at worst. And the doctor needs to learn that too!
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