Hi Ewa - no need to apologise for your "clumsy language" - I am always amazed at the standard of English spoken by most Scandinavians. Given the number of typos I've made already this morning I note the steroid/PMR brain is having a resurgence! I hope I catch them all!
And hi Dinah!
First of all - Ewa, everyone else has already said most of what I would have said so I won't repeat it but why don't you (and/or your doctor) think what you have is PMR? The very quick relief in the symptoms at 20mg is very typical of PMR - steroids will reduce the pain in other illnesses that produce the same symptoms but rarely as fast. If that speedy result isn't achieved then another cause should be sought - and anyway a range of tests should be done to rule out other things right at the start. But neither fibromyalgia or hormone related menopausal polymyalgic syndrome respond to prednisolone.
"How much pain can one live with without increase the dose?
No side effects yet, but I fear that weight gain....and the moon face."
That isn' t the point - the point is to use steroids to avoid the risk of other very unpleasant and, in some cases risky, illnesses. The long term inflammation can develop into GCA which is accompanied by the risk of going blind and this is more likely to happen in a patient with untreated PMR. It is still possible anyway - and nothing deals with GCA except pred. General inflammatory states in the body also predispose you to certain types of cancer and also to a range of blood vessel diseases causing stroke and heart disease amongst others.
PMR isn't the disease - it is the name for the symptoms due to an underlying autoimmune disease, which is causing your immune system to attack your body by mistake. The pred hasn't cured it - it is allowing you to manage the symptoms with a minimum of pain and stiffness. If you take too low a dose of pred to do that you have the worst of both worlds - the potential for the side-effects with none of the benefits. If you reduce the dose of pred below the one that achieves that control - the symptoms will return. They will only go away once the underlying autoimmune disease has gone into remission, become inactive - that might be in 6 months, it might take 2 years or even more. Only 25% of patients with PMR are able to get off pred in less than 2 years - and they are more likely to experience a return of the symptoms at some later date.
For many people getting down to 10mg as you have done is possible - for many others it has taken much much longer and at much smaller steps. I was given pred with a similar dosing at the start - I was OK at 5mg then but was then taken off pred - and the symptoms were back and even worse within 48 hours. Since then it has been increasingly difficult to reduce the dose each time I have had a flare - and that wa always because of being persuaded to reduce too far. I have no elevated blood values - I never have done, the ESR has been about 5 plus or minus 2 the entire time whether I am doing well or not.
I have recently seen a scheme of reduction from a very active research group where they reduce quite quickly to 10mg - not quite as fast as you have done though - but they then keep the dose at 10mg for a YEAR before continuing the reduction below 10mg at the rate of 1mg a month. Other reduction schemes have a relapse rate of 60% (3 in 5 patients), with the one year of 10mg they find only 1 in 5 patients have a recurrence of symptoms requiring an increase in their pred dose.
If you reduce too fast or too far you will be back to square one - and have to increase your dose of pred to be able to live comfortably. In the end that results in you taking more pred overall and puts you more at risk of what you fear in terms of side effects. At 10mg you are on a relatively low dose. Your body produces a corticosteroid anyway at a level of about 8mg/day, when you take pred your body ceases to produce the same amount - and it is EXCESS pred that causes the side effects. 10mg shouldn't, in most people, cause too much trouble. You can take a hand in the weight gain by being very strict about what you eat - the chubby cheeks are a bit different but to me far preferable to being immobile and unable to do anything. It was that in the 5 years I had PMR symptoms prior to being put onto pred that led to most of my weight gain. Inactivity is a good way to put on weight!
None of us LIKES taking pred. But the alternative for many of us doesn't bear thinking about. I have had a reminder in the last 9 months or so about how awful it can be - I won't be throwing my pred tablets away despite being far more cuddly than I'd like.
Eileen
