How long does natural cortisone in body take to kick back into production

Hi I've been on pred about 5 months and yes i still have a bit of pain - not too bad if I don't do anything.  However I am getting a bit fed up with that as our farm is falling apart while I watch.  I'm doing the slow reduction that Eileen suggested and have just started to reduce from 8mg to 7.5mg.  Surprisingly the days I had 7.5mg( only on the 2days 7.5   4days 8 this week) I felt no different than when on 8 only so was just wondering if my adrenal gland was helping or if it is too soon to expect that.  Will look forward to what you Rhuemy says.  We don't have one here only a GP but she seems pretty good.

Well I had a bit of a bomb shell dropped on me as the Rheumy said that after 2 years of prednisone my high spikes of CPR indicate RA in the shoulders and hips. I showed her Eileen's reduction plan and said I would like to try that before we go to the MX (what she calls a prednisone spacing drug) so we have agreed to a plan where I get my CPR rate checked at the end of every month and if it hasn't spiked I can start on the next reduction. If it has spiked (as she believes it will) I will start the MX so we can get off prednisone more quickly and start on the RA treatment. Still getting my head around the moving from PMR to RA It has a name?

The answer to my question about adrenals giving up the ghost permenantly, Eileen answer covers it apparently you would feel quite ill, dizzy etc and it is rare.

I have had PMR for 10 years, I have been on pred for over 5 years and it is only within the last 6 months I got to 5mg. It is perfectly possible you are on too low a dose to control the inflammation and that you need a bit more as your "maintenance dose". The pred does not cure anything - it is managing the symptoms so you can have a decent quality of life. The underlying autoimmune disorder still continues until it decides to burn out. That may be in 2 years, 5 years - maybe even longer. You start on a dose that will almost certainly reduce the inflammation - and then you reduce to the lowest dose that does that, not relentlessly to zero. 

I'm sorry to sound so heartless - but that is the bottom line of PMR. It comes when it likes and it goes when it likes. Nothing we can do will change that. Five months is VERY early days.

If your rheumy is sure it is RA then in the UK methotrexate would be the first line approach anyway. It is possible to have RA and PMP at the same time and it is not unusual for LORA (late onset RA) to be mistaken for PMR when it first appears. It isn't known whether the PMR progresses to RA or whether it is just so similar that they are mistaken for one another. 

Hi Eileen, please can you explain to me why after 6 weeks are you advised to slowly start reducing your pred, for the first month I was pain free, but thenafter a busy day started to have pain in my hip and felt really tired, I can cope with this but if I am    meant to start reducing slowly, why do this as my PMR has not started to go away,I really dont understand the logic, perhaps you can explain, thank you.

It is the usual case of one size does NOT fit all. They assume the 15mg is enough to deal with all inflammation quite quickly - and then the reduction should start to find the lowest dose that controls the symptoms. If the symptoms are not fully controlled you should wait a bit longer - and if your ESR and/or CRP were raised they should be right down before starting to reduce. Otherwise you must go by symptoms. If you still are having the same symptoms - tell your doctor.

However - is the hip pain PMR? Having PMR doesn't stop you having other problems and trochanteric bursitis is common alongside PMR.

I read on the osteoprosis site that prednisolone etc will deplete the calcium in the system if you are not under 7mg/day by 3 months.  Scary stuff as most PMR they say takes about 1 year on 10mg.  I have a friend who was on pred for 18months and she had a fall and broke her wrist, then they found she had two crumbled discs in her back that she didn't even know about.  She is under 70 and very annoyed with the Drs that she wasn't warned strongly enough about this possibility.  I guess that is why the Dr tries to find a smaller dose that holds the PMR at bay.  I also have just read a blog from a nutritionist from the USA about calcium and how you really need Vit D with it as we all now know , however she then said VitK2 also should be taken as they all work together.  She went on to say that we should be careful not to get too much Vit D as it can throw the balance out and Iron and Zinc will not be absorbed.    She also said that we should try and get our calcium from food rather than suppliments as they don't always work the way they should especially if we buy the wrong calcium tabs.  Then to top that all off she said be careful of pasturisation as that destroys the calcium in milk products and we should try and get our calcium from unpasturised dairy or green leafy vegetables, but did not suggest how much we should consume.

Has anyone else read anything that may shed more light on this problem as one never knows who to believe.

Pred doesn't necessarily lead to osteoporosis - about 40% of patients on pred are eventually found to have osteoporosis but more often than not they may have developed it anyway. After nearly 4 years on pred there had been no significant change in my bone density in that time - despite never having been below 9mg in all that time. I know other ladies with no change in bone density depite having GCA and - obviously - having been on much higher doses for a few years. None of us have taken alendronic acid - which many doctors hand out alongside pred to "prevent" osteoporosis.

That is the reason you should have a dexascan within the first few months of starting pred - you may already be osteoporitic anyway. You can't tell by looking at someone. Then you need another dexascan every couple of years to see if anything is changing. There is no point much more often than that because the machines can't detect small changes. IF you are osteoporitic then there are drugs that help reduce that - but I remain adamant they should only be used when you know there is a need - i.e. after a dexascan. 

It is also the reason that the one add-on that MUST be handed out with pred is the calcium/vit D supplements that come on prescription - they are the right ones. Having plenty of calcium around has been seen to change something in the bone metablism and reduces the risk of osteoporosis. We ARE better getting our calcium from food but to get the sort of amount we need we'd need a lot of milk! The nutritionist is correct there - but it isn't a case of "pasteurisation destroying calcium" - pasteurisation destroys an enzyme that helps transport calcium into the body so the amount you absorb is reduced but not entirely. Just wondering where she imagines everyone could get raw milk nowadays! It is possibly for some very locally but it isn't common. And if you are on warfarin you should not eat excessive amounts of green leafy veggies. So it is all a case of balance.

You're right about finding raw milk - unless we get our own cow.  Can't see hubby wanting to go back to milking every day and I probably couldn't anyway.  Lucky you getting the right calcium/D on prescription my Dr just said as I was walking out the door "Oh and you probably should take some calcium supplements" I will ask her when I go back which ones and if I can get a script, and I did have a dexascan and was told I had very slight bone loss since my last one 8 years ago when I was approx 55yrs, that of course was just postmenapause so I've had a few more years without the protecting hormones since then and the latest scan was pre prednisolone.  I guess your last sentence should be" if on warfarin you shouldn't eat excessive amounts of green leafy vegies".  I'm lucky that I'm not on anything else.  Did your Dr suggest Vit K2as well?

Oh Denise - you are so right! And i can't change it or put a post that is guaranteed to be next to it! Drat the lack of edit facility on this forum - not to mention the "new improved" format that has answers all over the place!

Will have to bother a moderator :-(

Thanks Eileen - in that case it sounds like I can keep reducing to 5mg and may have to sit for a while before continuing the reduction.  My family has a history of thyroid problems although I have asked each time to be checked and so far so good.  Is there any point asking my Dr for an adrenal gland function test ( I presume there is such a test)after I get down to 5mg to see whats going on? An older friend has been on pred for 16 years because of PMR and can't seem to get off ( she is only at 1mg now) and I'm wondering if the gland may just give up if it doesn't get used for a period of time?  What do you think?  AND a big hug to you for doing all the hard research yakka for us - appreciate it!!

I don't think the adrenal system being not right would cause PMR - that is a different thing altogether. PMR is just the symptoms of an underlying autoimmune disorder - adrenal insufficiency isn't thought to contribute and the vast majority of patients do get off pred altogether if they go about it the right way - SLOWLY!

Hi Eileen, think you might help me understand, when you lower dose of pred after 6 weeks, is your PMR starting to go away, I have dropped 1 mg for the last 2 weeks and aafter lunch getting            pain back in hip going down leg, last night I went back to 15mg to see if it made a differance, but my question is why reduce  and each time you are able to reduce does it mean your PMR is stating to go away?

No - that is the biggest mistake people make. The PMR is the symptoms of an underlying autoimmune disorder - that continues until it burns out which might be months or, more often it seems, years. There is not yet any way of dealing with the autoimmune problem - something has made your body unable to recognise its own cells as "self" so it thinks they are invaders and attacks them. All you can do is manage the symptoms.

The dose you are started on is one that is high enough to relieve the symptoms that are making life difficult - it used to be higher but it was decided that 15 to 20mg is enough for the vast majority of people and reduces the total amount of pred you need during the illnesss. The less pred you have to take overall the less serious the side effects are.

After that first 6 weeks or so the inflammation that causes the symptoms should be reduced so the symptoms are at an acceptable level even if they haven't gone altogether - some people never become pain-free. Then you start to reduce the pred dose to find the lowest dose that will control the symptoms - 15mg does but it is almost certainly higher than you need. Maybe 5mg is enough - and that is far better for you in the long term. 

The catch is that many people find it difficult to drop the pred dose - the body has got used to it being there and protests when there isn't as much to go round. The protest is very often the same sort of symptoms that you had that meant you were given pred to deal with them! So you can't tell whether it is the PMR returning because the dose is too small or steroid withdrawal. That's why we say to reduce as slowly as possible: you are less likely to miss the lowest dose point and also your body is fooled into not noticing the change as much. 

It is thought (though not known for sure) that the autoimmune disorder varies in activity, going up and down and so the symptoms also wax and wane. You might manage to get the dose down quite well when it isn't being so active - only to find the symptoms reappearing as it gets more active. Or you may be at a dose that appears to control the symptoms but it is missing a little bit of the inflammation and it increases slowly - like a tap dripping into a bucket - and suddenly overflows and you have pain again. We have often said that steroid withdrawal pain starts quickly and then fades as your body gets used to the new dose whereas the PMR symptoms returning tend to appear after some time, days or weeks, and then get worse. 

Does that make sense? Say if it doesn't and I'll clarify any bits that you don't get.

Where in the hip is the pain? Is it on the outside of the thigh and does it feel tender? Is it worse when you go up stairs or walk for a long time? It could be trochanteric bursitis and that is better treated with a local cortisone injection - it will improve with a higher dose of pred but then you are on an unnecessarily high oral dose to achieve the same effect. Another possibility is that the lower back muscles are in spasm and pinching the sciatic nerve - the pain is different but it is difficult to put into words. I've had cortisone injections in my back for that - but it is also possible to deal with it using massage/mobilisation of the hard knots of muscle or using Bowen therapy.