Am I right to be doing this?

Wow Gilly, 1mg every two weeks :o ? I was reducing by 1mg over a 7 week period from 10mgs and then when I got to 5mgs had to cut that down to .5mg over 7 weeks. I got down to 2.5mgs then had a bit of a flare and finished up on 5mgs again. I stayed there until life had settled down a bit and am now reducing by .5mg over 8/10 weeks depending how I feel. I've got down to 4.5mgs now and I'm going to stick there for a while. I don't expect to be completely pain free but I do want to feel well and have accepted that I may have to stay on a small dose of Prednisolone to achieve this. Good luck and hope the pain and stiffness is just temporary.

Love from Lizzie xxx

Gilly

Wow from me too at managing to reduce successfully by 1mg every two weeks and at reaching 3mgs from your 20mg starting dose last year! That's an unusually fast reduction, Gilly, but obviously one that has worked for you....'til now!

It probably means that whereas 4mgs was ok, 3mgs is the dose at which the inflammation in your body is not being controlled and therefore 4mg is a dose at which you need to stay for a longer period of time - a sort of maintenance dose until the pain/inflammation is under control.

A lot of people seem to get stuck when trying to reduce below 5mgs and it is generally recommended that once below this dose the body needs much longer (sometimes about 3 months) at each reduced dose as the reductions involved are at a much higher percentage than when reducing from the higher doses, plus, of course, the adrenal glands, which will have been suppressed by the higher doses need to kick back into full natural production of cortisol (steroid) again.

You have been very lucky to have been able to reduce down your doses thus far and remain pain-free throughout. So a little bit longer back on 4mg until your pain/stiffness eases again may be the best plan.

Good luck, Gilly, and do let us know how you get on.

MrsO

Hi gillybee -

You have done really well to get to 3mg so quickly but it seems that maybe you have reached that minimum level needed to control the symptoms of PMR for the present. I should certainly stick at 3mg for a while.

My experience is that I had a return of mild symptoms (stiffness in upper arms and hips) at 4.5mg and since I was going on holiday I went back up to 6mg. All symptoms disappeared.

After 2 weeks at 6mg, I then reduced to 5.5mg for 2 weeks (all OK) then went on to 5mg - thinking to stay there. This was OK at first then the upper arm stiffness started coming back after a couple of weeks and I decided to knock any inflammation on the head by going back up to 6 mg. (no stiffness) for 3 weeks. I am now in the process of reducing gradually to 5.5mg and I think I shall stick at that. I could live with the upper arm stiffness but was afraid it might develop further and it is nice to be completely free of it.

Good luck

Hilary.

Hi gillybee! I agree with what the others have said so far.

You MUST remember that the pred has not cured the condition - there is no cure, you can only manage it until the underlying disease process has burnt itself out. Some people need more pred to do that than others at any stage and in some people the (probably) autoimmune part of the disease does die down enough to allow them to get off pred altogether. But not always forever, the symptoms we call PMR can and do return and the course after the return may be much different from the original attack. It is often more complex and longer lasting.

The original idea of the reduction plan was to find the lowest dose at which you are functioning well and the inflammation is well controlled - but so often that aim becomes lost in the desperation to get off pred, both on the doctor's and the patient's part. Your lowest dose in this context was the last dose where you had a minimum of pain and stiffness - a level you are able to accept happily and live well at. Allowing the inflammation to get going again may mean you need to go back to a much higher dose to get it under control - I experienced that last summer and again this year and have had to go back to 15mg this year from well below 10mg/day. Last summer I just carried on acceptingly with just a small rise and it went on and on - this year it has been totally different and I'm well on the way down again.

It looks as if your \"management\" dose is about 5mg- a very low dose by any standards and one many people with other diseases take for life with few problems. And that is far better than forcing yourself off the pred and having a relapse which means a much higher dose and - possibly though admittedly not definitely - taking a longer time to get back down to a low level again.

And as a further bit of info to consider: studies have shown that patients who get off pred in a year are much more likely to have such a relapse than patients who take between 2 and 4 years to get off the steroids. And about a quarter of people need a low dose of pred for many more years, sometimes for life. There are also risks to having even a low level of inflammation going on in your body (cancers and vascular disease) so a very low pred dose is preferable to that as well.

5mg/day of the enteric coated version of pred will be associated with very very few risks - even fewer if you could manage to transfer to an alternate day regimen of 10mg one day and nothing the next. It works for some people in PMR but not all as it depends how long the antiinflammatory effect lasts (it's from 12 to 36 hours depending on the person so if you are a 12 hour person it won't be too good) but this is how pred is used for many patients with other diseases who need very longterm treatment and it minimises the side-effects which are minor at that level anyway.

I echo the good luck wishes - but don't force the pace of getting off pred just for the sake of saying you've done it. It might just come back to bite you.

Eileen

Hi again.

Thanks very much for your replies to this post.

I have read them all and understand all of what you are saying and will take it on board.

Yes, I think maybe I am rushing my reduction a little. I have my bloods checked every month, and all has been good so far showing no inflamation.

This is when the doctor says to me, that if I feel ok there is no reason why I should not reduce further.

Obviously as some of you have said, I have maybe reached the lowest level which controls myPMR. And as you say Eileen, the dosage that suits me may be about 5mgs.

From today I will go back to 4mgs and see if the stiffness goes. If this does not work then I will revert back to 5mgs for a while, as I know I am good on that dose.

I take medication for other conditions too, and I think that I have been in a bit of a rush to get my tablet numbers down in general. I must try to be patient.

Once again, a big thanks to all who have replied.

Gilly.

gillybee

Curious I am, what other medication do you take?

It does seem that as we get lower it gets harder to adjust. Last time I was still having to see-saw a bit even when I was down below 2. It took me 34 weeks to get from there to nil.

That was three years in all. It's been longer this time but here's hoping for all of us.

Hello gillybee........ am somewhat disconcerted that you have been going down so fast!

As the others have said, the PMR inflammation is still there although you show no elevated markers....... my markers have never been much elevated so we do not hold much store by them...... only go by how I feel

Went down to 10mg today..... only going down 1mg a month to ensure everything under control etc

All the research shows that quick descents and reductions only lead to further problems later on.... so I would advise caution and a much much slower reduction so as to ensure your PMR is controlled well and you do not have to suddenly go right back up to a much higher dose :shock:

Wishing you well :P

Gone back to 4mg today. Still a bit of stiffness on waking, but an improvement and nothing hurts at the moment.

Will see how I am tomorrow.

Oh, and my other medication is 4 lots of blood pressure tabs!

Gilly.

FOUR???? What on earth - One to reduce BP, one to keep the heart rate up, one to stop the dizzy spells and one to make you wee??? Sounds like time for a radical rethink! You'd think there might be a better way! :roll:

Eileen

Gillybee

Do you really mean FOUR different types of tablets for Blood Pressure?

I am even more curious, do you have their names?

Well, Gilly, you're so lucky if you're able to tolerate 4 different blood pressure meds all at the same time. I was unable to tolerate the Ace Inhibitor - Ramipril (big questionmark over whether it caused GCA because PMR was lying dormant in my body) or the Calcium Channel Blocker - Candesartan (worsened my kidney function)....all on separate occasions. I was then given a diuretic but didn't take it as I thought I spent enough pennies already! Oh and previously I had taken the Beta Blocker Atenelol for 3 years but hated the resultant weight gain and the tiredness and lack of energy. You're obviously faring better than I did, thank goodness!

MrsO

Hi Gillybe

With my first bout of PMR I went from 20mg to 1mg in a year and then on 1mg maintenance for another year and all that time I was pain free on each reduction which means that it must have burnt itself out and was free for nearly 4 years before it returned and now Ive been on a rollercoaster and 3 years in Im maintaining on 5mg after getting to 2mg and struggling

If you have aches and pains in your upper arms you need a higher dose Im afraid No one fights a dose increase like me !! I struggle on for too long each time before I increase !

Hope things improve for you soon

Mrs G

Hi again ladies.

Still on 4mgs of pred. I feel ok on 4, with little to no pain, so I have not had to go back to 5mg thank goodness. So it seems I better stay as I am for a while and not be too impatient to reduce.

So, Eileen and MrsK, let me tell you about the other meds I am taking:

Blood Pressure tabs - x 4. I have been taking these for about 8 years, well before the PMR onset. These are:

Atenlol 25mg, Ramipril 10mg, Amlodipine 5mg and Bendroflumethiazide 2.5mg. I take one tab daily in the morning.

I am also taking Mebeverine tabs for a touch of IBS which I have also been suffering from since just after the onset of the PMR. Any connection here??

After years of extremely good health, I sometimes wonder why all this has come about.. :? But in spite of all this medication, I am feeling quite well at the moment, so they all must be doing their job!.. :wink:

Gilly.

OK, fair enough - ABCD combo therapy - but did you really need to go through the addition of each one at a time to your inital therapy to get your BP down? Where did they start? Was it very high to start with? I complain about pred plus supplements!!! BTW - I'm just really curious not just being nosey :roll:

What happened with the onset of the IBS? Was that before or after the diagnosis of PMR? Curiousity again!

Eileen