Brief background; PMR symptoms undiagnosed for > 3 years prior to Pmr diagnosis by rheumatologist Aug 2018. Immediate response to 15mg pred, symptoms disappeared in hours and almost full mobility. Ok on taper program until 10mg point early 2019, when, no better or worse, so tapered off totally. My bad. After a month...surprise...everything returned with a vengeance.
Saw GP in April as unable to stand, turn over in bed, blah, blah. She suggested restarting pred at 20mg. Tried that, didn’t work, so I took 25mg for a few days and symptoms kicked back into touch. Reduced to 20mg, all good, then tapered slowly back until I got to 10mg beginning of July. Dropped 1mg for 2 weeks, then a further 1mg for 2 weeks, then 0.5mg at start of August.
Then it all went pear shaped. In past 9 days, all symptoms returning. Struggling with muscle weakness, overwhelming fatigue (I’ve slept three times today and can barely stand without extreme effort). I feel like Sh**. Not me at all and I’m obviously wrong somewhere...so what to do now please?
Today I’ve taken 10mg, but any thoughts as to whether I need to hit with perhaps 15mg or higher. Probably feeling as bad today as anytime in the last 18 moths. PMR has snuck back in just when I thought it was safe to open the door.. 😥😥The rocky road and now the boulders! I’d appreciate any thoughts. Thank you.
23 Replies
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Oh dear. I am afraid you are stuck in a yoyo situation. You are tapering far too fast and it can be harder to get back under control. I never tapered any faster than 1mg every 4 to 6 weeks. Sometimes only 0.5mg in same period when 1mg was too much. The problem is that by reducing by 1mg every 2 weeks you don't know if that dose has fully controlled the inflammation then you've dropped at least another 2 or 3mg before you stop because symptoms strike again. I would go back to the dose I felt ok at then stay there for at least 4 weeks then no more than 1mg each drop. You need to consider doing dsns method or DL simple taper so you don't just drop from one dose to another overnight. You break the change in slowly. I hope you feel better soon..🌻
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Thanks Poop. You’re right. I thought I could get back to 10mg reasonably well. Wrong!
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I think most of us have done it...but take it easy this time so fingers crossed you will control the inflammation. 🤗
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I’m more profoundly stupid than some because I’ve already failed once on this horrible journey. One thinks it’s ok to reduce a bit, but that gives the disease a chance to regroup and attack again. I thought I’d grasped acceptance. It’s such a fine balance, that 0.5mg adjustment can be critical. Thank you.
No wonder you are in a bit of a mess. Your first reduction from 15mg to zero was much too quick. Your PMR was obviously still very alive and although you may have felt okay for a little while it was still there waiting to build up again.
When you restarted Pred this year, you really should have taken things SLOWLY. Have to say your idea of slowly doesn’t seem to be the same as most on here!
You may find 15mg is enough, but unfortunately every time you “bomb” it becomes that but more difficult to get back on track.
Realistically I think you’ve got to consider 15mg as new start - and this time reduce in a more sensible manner. 1mg at a time on a monthly basis until you get to around 7mg and then 0.5mg a time!
Have a look at this - you may not like the contents - but it’s a realistic view of PMR/GCA -
Thanks DL. I know I messed up big time when I tapered to zero. I thought I was back on track to restart a slower taper from 10mg, but I feel sure you’re right; I’m going to have to hit with 15mg.
There’s no point in my trying 10 if it needs to be higher because, as you rightly say, even after some 4 years, the underlying disease remains very active. Now it’s bitten my backside again and tbh, I feel just about as bad now as I did before diagnosis. So, I’m going to take 5mg before bedtime tonight and start on15mg tomorrow. Thank you. I’m my own worst enemy. I appreciate your direct and honest comments.
We all do what we think is right at the time, unfortunately it didn’t work for you - but no point in beating yourself up about it. What’s done is done!
As I said in PM just go a bit easier this time around. Your PMR will go eventually, just don’t try and rush it.
We all live and learn! It is really hard to accept the reality isn't it? My reality is that I have basically stayed at 11mgs for over 7 years!! I still keep wondering about this but every time I reduce below this, I have a flare. This past year I haven't even tried to reduce as I have had 2 joint replacements and another 2 to go, so my body is not ready to let go of the PMR with all that going on!
That’s encouraging, thank you Suzy. Tbh, I think I’d gobble 20 for the foreseeable if it meant feeling better than I do currently. Live now, worry later🍷. I hope your further surgeries go well.
I can understand your frustration. I agree with what’s been said; it sounds like your reductions are outstripping the speed at which your PMR is receding. A slow reduction is way slower than you’d think. Do read DL’s link as it will help put some perspective on the recent events.
I'm sorry you are feeling bad and I don't want to sound harsh but I think you would benefit from a reality check .
The terms you are talking about your PMR in prove this.
1. There is no such thing as success or failure with PMR , or any Chronic Illness, there are just controlled or uncontrolled symptoms . Fact.
Having PMR is not a test , a race , or a competition , it's just having an illness that we can find a balance with until it goes in its own sweet time. Finding your sweet spot involves trial and error but it is not a personal failure if you make a mistake , just a lesson about your own journey with the illness that you can learn from.
2. Pred is not a " cure" for PMR , it is only a way to reduce your inflammation , and therefore, the pain . Fact.
Just because your pain is controlled by Pred doesn't mean that you no longer have PMR. That will go in its own sweet time , the only way to keep it under control is by finding the right balance of medication with adaption of your lifestyle and patience so that you can have quality of life while it is still in your system.
Your goal with PMR is to find the dose of Pred that makes functioning everyday possible. It is not your mission to taper off your medication as quickly as possible , that's not how treatment works . It is your mission to find the dose you are comfortable on , and not taper again until your body has had time to adjust to working at that level happily before you try to taper again.
If things are going at full speed in your life or you are ill when you think your next taper should start , you don't . You wait until your body is not being assaulted by the outside world before you try to change your balance on the inside.
If you feel growing discomfort on a new dose you don't carry on regardless , that's were Flaring Dragons lie , you go back to the previous dose for a few more weeks . Take time to look after your body with your nutrition and some exercise to keep it strong then try again.
Only Doctors keep to a timetable , PMR doesn't , you won't get rid of PMR any quicker by trying to get off Pred too quickly , in fact , you are more likely to have it much longer because you never get full control of your inflammation by yo-yoing your dose.
So , for now , increase your dose to 15 mg as others have said but don't try to rush down the doses to 10 mg again like is often recommended for a normal Flare . Do as DL says and use it as a fresh start. Stay on that for at least 3 weeks upto a month , learning about your body , accepting your limitations , working out how to adapt your lifestyle and building strength back into your body with diet , nutrients and gentle exercise. Giving your body time to clear the inflammation and repair itself from this last assault.
Then begin the slow tapering method from that point .
Tell your Doctor you are doing this , if they object , explain that you are following advice from other sufferers and want to use the recommended slow taper to stop these Flares from happening , as in the end it will get you on a lower dose much sooner without the issues you have been experiencing.
Sorry if I sounded like your Mum , but I think you needed to remember that having PMR is not your fault , and not being over it in a few months is not your failure. Give yourself , and your body , a break and allow your body to cope and recover in its own time.
I hope you feel more yourself soon , and find the balance you deserve. Take care x
Thanks Bleary. The GP isn’t a difficulty; I don’t know her well, but she hasn’t objected to my observations and proposals. I have plenty of pred to self manage.
I just have to regroup and slow further. I’ll get there😀
I have had PMR for 15 years - it cycles and every so often it gets too active for the dose of pred I am on at the time. It took me 4 years to get reliably to under 9mg/day. But I flared again - not due to changing the dose but the activity of the underlying disease increased. Almost the entire time I would probably been OK at 10mg but between times I have got lower. Everyone is different but there are 40% of us who have a long term form of PMR requiring some pred for 10 years or even more. Sometimes we get lower between times but at some point some of us have to go back up. And slow slow slow is the way to avoid the yoyo effect.
Thanks PMR. That’s interesting; the more I learn, the more I realise just how complex this disease really is. It certainly seems to cover a very broad spectrum and I have a sneaky suspicion that it will be my companion for the long haul. Anyway, armed with that information, I’ll tackle with a larger dose and slow tapering. It’s certainly kicked off big time in just 3 or 4 days after being virtually symptom free ( other than ever present fatigue) for nearly 4 months. Just came back from nowhere, so I had no suspicion that it was regrouping silently!
I was just the opposite...so afraid of a flair (which I luckily never had) that I stayed on whatever dose for about a month..sometimes more. Even if I reduced by just .5 still waited a month. Slow slow is right and PATIENCE! Now off prednisone for 7 months. Doing fine. There is light at the end of the tunnel, but some tunnels are just longer!
My rheumy said to taper by 1mg a month down to 11 and then by .5 mg a month. I use the DSNS taper to make the drops and, even then, stay on the lower dose for a month if I'm unsure. I haven't managed to get below 10 yet, after 2 years. I'm not going to try to drop again until I get back, and have recovered from, a holiday is September. I have tended to see it as mind over matter or a test of my willpower but I hope I've learnt that it isn't. The pred only manages the symptoms it doesn't cure the underlying illness
I tapered to 5 1/2 mg for 8 days, then symptoms returned. I was in panic and desperate for advice so asked to see Dr (non available), would have been a waste of time anyway. Saw a Nurse Practitioner and trainee GP, never once did they say it could be a flare. This morning 3 weeks later and raising to 6 1/2 mg I jumped out of bed with no pain or stiffness. I came to the conclusion it was a flare (my first). Will stick at 6 1/2 for a few days the taper again by 1/2mg a month. Fingers crossed I can get back to where inwa
Stay at the increase for at least a week , preferably two before that 0.5 reduction on the slow method advised here. One week to dampen down the previous Flare in inflammation , one week for the body to use that extra cushion of pain relief to help it restore its balance and nutrient base before you begin the next taper.
Going down by 0.5 amounts can also be slow , again, even if you feel great, don't think I'll push into the next step down before the four/ six weeks is up . The extra weeks are for you to do the self care part of your therapy . With the cushion of feeling good you get your body used to doing a little more activity , you build up your nutrients , and you allow your body to relax into working with the new doseage while doing everyday things , and exercise , that you can manage that builds up your muscle strength and helps reduce non PMR pain . Only then you begin the next step when the body is prepared for another chemical change.
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