Am I right to be doing this?
Posted , 8 users are following.
Hi all.
Not posted for a while as my PMR has been improving, and I have been busy with a 'life' at long last. No excuse for not posting though I know..
Anyway, I have managed alongside my doctor's advice, to get down to just 3mgs of pred a day now, and I generally feel very fit and well after starting out with 20mgs of Pred and being racked with pain all over my body last year.
The thing is, since I have dropped to 3mg I am again feeling some stiffness in my upper arms, shoulders and neck on waking in the morning. This usally gets much better as the day goes on and I move around, but doesn't actually go away completely. I have always believed that when you decrease your dose successfully there should be no pain at all befre you drop down further.
I have been decreasing the doses by 1mg every 2 weeks and have been fine, but I am now wondering if I should drop any further while I have this morning stiffness? And do I need to up my dose again to get rid of it?
I am a little dissapointed as I have been doing so well with my Pred reductions in general. :cry:
Advice would be appreciated.
Gilly.
0 likes, 41 replies
Lizzie_Ellen
Posted
Love from Lizzie xxx
MrsO-UK_Surrey
Posted
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
purplecat
Posted
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.
EileenH
Posted
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
gillybee
Posted
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.
mrs_k
Posted
Curious I am, what other medication do you take?
BettyE
Posted
That was three years in all. It's been longer this time but here's hoping for all of us.
fiftiesgirl
Posted
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
gillybee
Posted
Will see how I am tomorrow.
Oh, and my other medication is 4 lots of blood pressure tabs!
Gilly.
EileenH
Posted
Eileen
mrs_k
Posted
Do you really mean FOUR different types of tablets for Blood Pressure?
I am even more curious, do you have their names?
MrsO-UK_Surrey
Posted
MrsO
Mrs_G
Posted
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
gillybee
Posted
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.
EileenH
Posted
What happened with the onset of the IBS? Was that before or after the diagnosis of PMR? Curiousity again!
Eileen