Sedimentation number

[Robinsnest72]

After three months I had blood work done to see Rhemy next week. I have reduced from 11 to 9mg of pred since seeing him. My last sed rate was 2 and this one was 8. Is there a reason to be concerned. I have never been where I do not hurt in the morning since getting PMR I take 7mg of pred around 6:30 and by noon I go out on my bike. I have just accepted I will be stiff and ache in the mornings. I do not want to raise the pred. I have had PMR since last August and started out on 20. Dropped to fast to 10 and back to 15. Been slow ever since.

[Hidden]

If you have experiencing symptoms and your markers are up I don't know what I can say if you don't want to put your pred up???🤔

You could try splitting the dose or have coated pred at 10pmish and you may have better mornings. None of us want to put pred up. Unfortunately sometimes that's what has the happen. I have put mine up by 5mg for a couple of days then gone back to 6mg (present dose 3 years in). You could try that but it doesn't look like your dose is high enough.

[Mary63]

1. Maybe you are not on a high enough dose if you are hurting in the mornings. Because although you think you have done a slow reduction, iIm not sure. To get from 20mg to 9mg including a flare which took you back to 15mg, all since last August is FAST!

2. Or maybe the pred lasts less than 24 hours for you. In which case splitting the dose might help....2/3 when you wake and then 1/3 in the evening.

3. Or set alarm to wake at 2 in the morning and take pred before the cytokines are released.

I am not sure whether ESR going from 2 to 8 means anything. Others who know much more than me will be along. Good luck!

[PMRpro Ambassador in reply to Mary63]

It means that it is possible the inflammation is increasing again.

[fmkkm]

Hi Robin,

Your sed rate is still within normal range. It is possibly trending up but there is frequently a margin of error for lab tests. Perhaps you have dropped the prednisone too low, PMR writes the rules of the game not us. Keep an eye on the pain and if the sed rate continues up.

Wishing you all the best in this journey 🌺

[PMRpro Ambassador in reply to fmkkm]

Normal range is the range of levels found in a population of 10,000 plus healthy people - not in a single patient. Each of us has our own normal level, mine is low single figures, if I get to double figures it is well raised.

[Blearyeyed]

Keep listening to your body and the aches and pains.

You will begin to know the difference between the aches and pains that may not be PMR or Flare related ( that you can cope with , ones you can gently exercise out from , or just take a standard painkiller for like you may have before ) and the sort of flare based PMR pain from overdoing it or other triggers that means you need to raise the Pred and actually need some muscle rest.

And don't forget you don't always need to increase that Pred by a big jump in dose if the Flare is mild , you can taper it up to a level you need , restore there and then taper down again.

The best thing to remember is that you can't " work out " or " work off " PMR pain unlike muscle pain or injury.

Get an exercise level that you can cope with , drink lots to compensate for the extra dehydration because of your already inflamed system , rest more in sessions , cool down longer .

Take a warning from PMR sufferers past mistakes .

Don't just think about your route and length of activity but consider enviroment and weather in choosing the type and amount of exercise you do . Overheating , wind and damp conditions has a really big effect on PMR bodies and impacts alot on the positive impact of exercise and how much we should do.

Don't try to fit in exercise on and otherwise busy , activity heavy day ( even if you really want to ) as that's when you trigger an exercise induced Flare, or extra Fatigue , that means you have ruined all your good work , as it will be PMR and you will need to increase the Pred .

If you are tired or have Fatigue or feel more pain in joints don't try to think exercise will wake you up or make it better. It's then that you have to be prepared to put your feet up .

And have a good soak in warm water or a massaging shower after a big work out , have fun x

[Hidden in reply to Blearyeyed]

I can’t begin to tell you how accurate your post is. As you post that, I am living and experimenting with different types and intensities of exercise and how it affects pmr. You’re exactly correct. I am shave cut my exercise down to just swimming at a moderate pace and walking(not fast). I can’t believe how much better it is. I am from the old school where you can burn it out. Not with this.... got to go slow and easy. . . Cycling and running is off limits. I just can’t hold my intensity back to prevent flares. Robin, you maybe overdoing it. Maybe Just slow walk for about a week for exercise and see if it helps. This pmr does not line intensity at all. I’ve been told and now living proof

[Hidden in reply to Hidden]

You have come a long way in 12 days! I am not glad you suffered when you did a big cycle with your buddies, but perhaps you needed to do that to realise your new (temporary🤞) normal. Hopefully your recovery will be enhanced by your new approach. 😃🌻

[Hidden in reply to Hidden]

thanks, Poops... PMR will make you really learn your body and what affects it. Trying to figure out how the body will react with foods, exercise, and medications is a real challenge to us all.

[Soraya_PMR]

No reason to be unduly concerned about ESR rising from 2-8, it’s still within normal limits. But as we know ‘normal’ means very little with PMR. It is a rise, but don’t knee jerk react to it, wait for the next blood test and see if it continues to rise.

Re morning stiffness: if you want to eradicate it, re-read responses to your previous threads. Lots of suggestions there. It may be as simple as swapping your 2 and 7 round the other way.

[Robinsnest72]

Thanks. I did reduce off my evening dose the last time. Maybe I should reverse as you have said. This is such a game. I like to leave it for a week to see what happens and then I try for what works best. I guess my concern is everything I have read leads me to believe it will be harder to get off the evening dose.

[PMRpro Ambassador]

I think it does need to have a close eye kept on it. Not only PMR will raise the ESR so a rise in sed rate without an increase in symptoms may be due to something else but if it is a cold or injury for example the level should not continue to rise, it should stop rising and then fall again. If it continues to rise then a flare of the disease activity MUST be considered.

Most people will hurt in the mornings because the inflammatory substances are shed in the body at about 4-4.30am. Depending when you take your dose of pred the cytokines will take hold and create inflammation and some symptoms until the pred takes action. The optimal time to take pred to reduce that is 2am - and some people do wake to take it. Others split their dose so the anti-inflammatory effect of the previous day's dose is still present at 4am which helps.

But simply refusing to adust dose or timing may just result in the inflammation building up again until it is like the start. It is your choice - but not taking enough pred at the right time for you means you might just as well not bother at all. Eventually you will be back here you started, in enough pain to go to the doctor and ask for something. And you will need a much higher dose again to get it under control. Prevention is better than cure.

[Robinsnest72 in reply to PMRpro]

Thank you for this info. I am not refusing to up the pred I just want to be sure I am not suffering from the reduction. I see the rhemy on Thurs and if he feels I need to increase I will. Some of the side effects from the pred are not pleasant so this is the reason for wanting off.I am not aching in bed as I was when I first got it so that is why it becomes confusing is it a flare or just a bad day.

[PMRpro Ambassador in reply to Robinsnest72]

Most pred side effects can be avoided or mitigated when you know how - just ask.

[Blearyeyed in reply to Robinsnest72]

Don't forget that specialists often try to make patients taper off steroids faster than they need to , this often causes a rebound in the PMR and you keep having to up the dose , actually meaning that you end up on the steroids longer.

What I am saying is , if you feel you would benefit from a higher dose now , finding which dose gets you to the right level , staying there for a while then tapering in a way that suits your body and symptoms , it is time to do it.

So on Thursday , remind your Rheumy you are a team against PMR , and so your treatment shouldn't be based on what he / she feels but on what you feel and your lifestyle needs.

Steroids have side effects, but the pain if uncontrolled finally does far more damage to you mentally as well as physically , and then you still end up having to bite the bullet and take them for longer anyway.

Getting beyond PMR is slower than you and your doctor's think. Try a slower taper from a manageable level and recovery will be alot easier with less tapering failures.

[PMRpro Ambassador in reply to Blearyeyed]

"actually meaning that you end up on the steroids longer." and almost always taking considerably more - the perceived benefit of being 1mg/day lower than you need is wiped out in a few days when you have to go back up 5mg/day or more to get a flare under control and then have to struggle back down again.

[Blearyeyed in reply to PMRpro]

👍

[PMRCanada]

When I started taking my pred dose at 2am I no longer had morning stiffness. It was a game changer for me, however it does mean interrupted sleep. If you can get Rayos (depending where you are), you can take it at 10pm around bedtime, and you still may wake to no stiffness in the morning.