newly diagnosed

[barbthy]

I am not symptom free on current dosing but pain not as bad as when not on prednisone. The fatigue and brain fog are terrible. Wondering what is the best time of day to take prednisone. On 20 mg for 2weeks then 15mg for 1week then 10 mg and back to doctor

[Mary63]

The experts will be along later, but here's my two pennorth!

Early morning is the best time to take prednisolone.

The dosage reduction suggested for you seems very very fast, and likely to lead to a flare.

Sorry you are feeling so awful.

As I say the really knowledgeable will be along soon.

Mary

[Gaijin]

Did you have fatigue before starting on the Prednisone? Extreme, constant fatigue, muscle fatigability and elevated inflammation markers are basically the only complaints I had , pre dx of PMR . I not had pain when I used my muscles and had no stiffness. Eight months into Prednisone ( started at 20mg and now down to 8.5/7.5, for the first time in almost two years, and don't have that horrible fatigue all the time. I do get tired still, after exertion and my shoulders get sore when carrying a small bag of groceries and my hips/ pelvic muscles get sore when walking further than I should. Thanks n m case, I think the fatigue was due to the PMR.

The foggy brain, I also have, but not as constant or intense anymore as I've tapered the prednisone. I'm attributing the foggy mind to the Prednisone, as they call it "pred brain" on here. It has been one of the scariest side effects for me. At first I was sure it was cognitive dysfunction at the very least. Now, my brain function has recuperated.

The experts will tell you what Mary says- the tapering schedule you got is breakng the golden rule: taper 10% at the most, a month.I was I was inicially also put on a schedule even faster than yours, I knew it spelled disaster, so I followed the tapering method recommended by the experts ( by experts, I mean people who are knowledgeable about health in general plus have personal experience managing PMR/ GCA.

I know it's hard not to follow your doctor's instructions, specially as they prescribe the Prednisone, but you have to try to get some autonomy with the tapering method ... I found it to be crucial .

Hope you get some answers soon.

[Celtic PMRGCAuk volunteer]

Hello barbthy, the others have already given you some helpful advice, and just a couple of things to add from my experience.

It is only a very rare and lucky person who finds they are completely symptom-free on starting steroid treatment, but most of us can expect to see around 70% improvement within a week or two, sometimes within hours - the latter was certainly my experience.

Early morning is the best time to take the complete daily dose of steroid as it is more in tune with the timing of our bodies' natural cortisol (steroid) production when well.

The slower you reduce from the starting dose the better, and also the smaller that reduction the better. You would be better advised to try 20 to 17.5 initially - 20 to 15 is a massive leap for the body to adjust to. And one important factor to bear in mind is that the steroids are not curing anything - sadly nothing does at present - they are just damping down the inflammation to ease the pain whilst the disease runs its course, and that can take anything from 2 years upwards. Because of this fact, we tend to fare better if we are able to give ourselves plenty of TLC to allow the steroids to do their job - pacing ourselves is probably one of the hardest lessons we have to learn following diagnosis. But the more we try to push our bodies to be normal, generally the more steroids we will need to cope with the resultant rebelling symptoms.

I do hope that helps but doubtless you will have more questions. Rest assured there is always someone around on here to try and answer them from their experience - always bearing in mind at the same time that our bodies are all a little different and therefore can respond differently to both the symptoms and the treatment.

[DorsetLady PMRGCAuk volunteer]

Hi barbthy,

Others have said it really.

Morning recommended for Pred, with or after food. It takes an hour or two for plain tablets to get into system, and slightly longer for the coated ones, so some patients take the latterlast thing at night. They can cause sleep disturbance, but it means you feel better when waking up, which is usually the most difficult part of the day.

Your reduction plan is very quick, wonder if doctor has gone that way because he's not sure of diagnosis, and is checking to see effect Pred has on your symptoms. What tests did he do, and what symptoms did you have pre diagnosis? 20mg is the higher end of the start range for PMR as well, did he say why he's started you at that level?

Even going down in 2.5mg steps from 20mg to 10mg is very often too much for lots of patients, and certainly only staying at 20mg for 2 weeks may not get the original inflammation properly under control, although more doctors seem to be trying that. Also only one week at 15mg will not really confirm you are okay at that dose before reducing again.

Sorry to say, that unless you are one of the few lucky ones, and if it is definitely PMR, you are likely to suffer repercussions on this tapering plan, and more than likely will have to start again. I do hope not, but it's only fair to warn you of that possibility.

Please keep us informed.

[barbthy in reply to DorsetLady]

Before he got CRP back he put me on a medrol dose pack 60mg to 10 mg over 10 days. Was immediately pain free and by the time I reached 10 it was back with a vengeance. That's when he started this dosing.

I have another question about physical therapy for the stiffness and muscle weakness- should I do stretching exercises?

So glad to find this group

Thank you

[DorsetLady PMRGCAuk volunteer in reply to barbthy]

Hi again, gentle exercises/stretching is good, but not too many repetitive actions. Your muscles are not as resilient as pre PMR, so take much longer to recover, so the harder you work them the longer the recovery time.

Like everything else with PMR, slower and gentler!

[CT-5012 in reply to DorsetLady]

Dorset Lady

Have found out the hard way about slower and gentler, overdid things two weeks ago and now have sacro-iliac strain to add to pmr. Will go much slower in future. Was diagnosed with pmr in February 2015 and am now taking 5/7.5 alternate days and was pain and stiffness free until now. Curses for being so stupid!

All good wishes everyone.

[PMRpro Ambassador]

In PMR/GCA the entire pred dose should be taken at once, first thing in the morning.

Having read all the other posts - your rheumy is being not only cavalier in that reduction, he is setting you up for failure. If all the symptoms were back at 10mg with a Medrol dose pack - what on earth makes him think it will be any different doing this?

Pred does not "cure" PMR, you clear out all the existing inflammation, and that can take up to a month, sometimes more, until the symptoms are as improved as they are going to be. Then, and only then, should he be telling you to reduce. For some people even that is too much and going to 15mg via 17.5mg is more comfortable. PMR lasts a couple of years or more - this is no race to reduce the pred to single figures. Rushing like that often leads to a flare, resulting in a return to a higher dose and once you start to yoyo the dose you are often in trouble.

rcpe.ac.uk/sites/default/fi...

is a good and sensible presentation of a reduction scheme that is far more likely to work and is from a top PMR rheumy group in the UK. Even that is sometimes too fast.

If your rheumy insists that his approach is the correct one and won't discuss the approach with you - consider voting with your feet.

[1Purplecrow]

Good Morning... what others say, ditto!

Re brain fog and fatigue,.... sorry to say, they are part of the PMR disorder. Good news, as prednisone takes hold of the inflammation, brain fog will begin to resolve.

Regarding the fatigue, it is also part of the PMR experience, and will stick around, in varied degrees, for a good while.

That being said, I fall back on my mantra....listen to your body...... if it's fatigued, go lie down for a few minutes. sometimes just 15 minutes is enough to get you going again, sometimes you need an hour.

Schedule a daily nap, just for you...relax, read, sleep, whatever, for one hour. (Set a clock so you don't sleep too long and mess up night time sleep). Sometimes, in early days, I needed to do this in the morning and again in the afternoon .

In the meantime, be kind to yourself, and acknowledge that what's happening is in the normal range of PMR. The docs rarely know the things you will learn on this site... until we/you tell them how PMR really works!

PMR is not life threatening, but it is life-changing.

Kind regards, Jerri

[Rugger]

As long as I'm awake, I take my uncoated pred around 2 or 3 am, with some yoghurt, so that it will be in my system when the cytokines, which cause the inflammation, are shed around 4am. Occasionally, I sleep through and take my pred with breakfast at 8am. On those days, I really notice the difference in pain in the morning. So the earlier the better is the answer.

I agree with the comments about your fast taper. I started on 15mg for 2 months, then 13mg for 1 month, 12mg for 1 month, 11mg for 2 weeks, 10mg for 2 months because of symptoms, then monthly - a bit slow compared with your advice, but I've had no flares and now on 4mg after just over a year.

[Hidden]

Yes. Brain fog. Erm. What was I saying...yes brain fog . That has been my past 12 to 18 months. Go to shop with list and come back without half. At one point 7 times to get toilet roll. Am 56 and was sure I should get tested for early onset dementia. A lot better now but still foggy on bad days or in high stress situations like going to gp etc

Hope you feel better soon

[PMRpro Ambassador in reply to Hidden]

Does the list at least get to the shop? That didn't always happen with me! But you then have to hold it in your hand and tick things off as you put them in the trolley!

It does get better - promise!!!!!