Whether to accept a certain level of pain instead of decreasing pred?

Thanks for the welcome. Yes, I too have lots to learn from this forum and elsewhere.

My question is, would it be a legitimate thing to do to just remain where I am (20 mg. in four doses) indefinitely, with some accompanying pain, until--possibly--the pain either goes away or increases so terribly that I agree to raising the Pred level.

 I think I would rather tolerate a certain level of pain than take more Pred. trying to have no pain at all.

Thanks for any and all advice--

Not at all Barbara, you will find your sanity here lol, it's just all so much at the beginning.  I can only speak for myself and I do not have a medical background.  At PMRs worst and undiagnosed on a scale of 0 to 10 how bad was my pain, my answer was 12 out of 10.  I could not go back to that type of pain.  I would say I was one step away from a wheelchair.  I had lost my mobility, every movement was excruiting and after taking my 20mg pred all at the one time.  My gp said I was to take them all together, within a period of hours the pain was reduced greatly and after a couple of days a lot better.  I still have twinges in my thigh muscles when driving or when I am getting showered and dressed but I can live with this.  I am waiting for a first appointment with Rheumy the Consultant I seen last week was Endocrinology and they are arranging appt.  I am willing to taper as slowly as possible and everyone is different but stick around this forum and you will get loads of info.  Take care.

Dear Pat

Thanks for telling me about yourself! As for me, I needed to scream when getting into or (mostly) out of bed. That is gone, thank the good Lord. Some slight pain in the arms remains, but I can cope with that easily!

Best, Barbara

P.S. Good luck with the rheumy appointment--

 

I was started on 15 mg beginning of November .Aftet blood test reduced 1 mg 5 weeks later . My pain is , was mainly in shoulders neck arms and face . After next blood test reduced 1 mg again .Was told to reduce again which I did 2 weeks ago .Such severe pain gradually came back over a week , which was so bad went back to docs yesterday Now she was surprised I had been reduced the 2nd time because there wasn't much of a drop in my test results previously So have now gone back up again 1 mg . Needless to say it was a different doctor I saw . But from what I have learnt from this site ,you take all med in one go each morning . Reduce dose very slowly ,after blood tests have shown improvement .Do it at your pace and hope you here a comment from Elaine who has obviously gone into PMR in a lot of depth and has learnt and gives sensible advice .Hang in there ,hopefully in a couple or three years time we will be in control of this pain in the neck problem . No pun meant

Sorry, I was a bit confused by your first post where you say "lower dose to get more pain relief". This is a starting dose to eliminate as much inflammation as possible - it isn't a cure, it isn't 100% guaranteed pain relief either.

I'll try to answer this one:

The 20mg - which to get the best anti-inflammatory effect should be taken in one dose in the early morning as MrsO has said, is the start. It is a dose that works for the majority of patients to relieve that inflammation and you remain there for 4 to 6 weeks until the symptoms are relieved as much as it looks they will be. Then you slowly reduce the dose in small amounts to find the lowest dose that will manage the symptoms to an extent you get a decent quality of life whilst suffering the fewest side effects due to the pred. The higher the long term dose, the more side effects there may be. Pred has 82 documented side effects, some minor, some very nasty. Some people have next to none, others get a lot, sometimes even enough to put up with PMR rather than take it. At present it is the only reliable drug to manage PMR symptoms although doctors seem to be trying out drugs used in other inflammatory diseases, mostly unsuccessfully inthe long run.

Nothing cures PMR - it is due to an autoimmune disorder that makes your body's immune system attack your body in error and that will run its course and, eventually, burn out and it will go into remission. In some people it happens in a couple of years, in some people it lasts much longer, I have had it for 10 years and it is still there if I reduce the pred further than where I am now at 4mg.

It is very unlikely that any doctor would agree to let you stay at 20mg indefinitely and wouldn't encourage you to raise the dose any further - it should be all downhill with regard to dose from here. It's like a springclean followed by a daily wipeover ...

Hi Barbara, not a problem me telling you about myself.  It can be reassuring that someone else has or is going through the same thing.  The correct way to take pred is all at the one time.  Did you get or take calcium and vitamen D, all one tablet prescribed by your docter.  If you did, don't take it at the same time as pred.  Also don't take any indigestion remedies 2 hours before or after taking pred.  Keep logging in when you can and you will find out so much about PMR and pred.  Good luck on your journey.

Thanks, Eileen! Q: "It is very unlikely that any doctor would agree to let you stay at 20 mg indefinitely. . . ." HOW COME? Just curious-- 

At 20 mg. after one week, I still have a bit of pain, esp. in arms, but it is tolerable. It does not destroy my quality of life that much, so I am reasonably content.

P.S. Who says the correct way is to take Pred all at once? If true, I wonder why my rheumy has me take the 20 mg. in four 5 mg. pills during the day/evening--???

 

Thanks much, Carol!

 

You can't stay at 20mg forever - as I explained before, you use that dose to clear out as much of the inflammation as possible and then you reduce, slowly, to find the lowest dose that manages the symptoms. 

You could stay at 20mg for ever if you (and your docotr who prescribed it) were prepared to accept the side effects that come with that dose. Pred is a very powerful antiinflammatory but it is also a very dangerous medication used wrongly. When it was developed in the early 50s it was heralded as a miracle cure for arthritis as people got up out of wheelchairs and walked (probably PMR patients). Then reality hit - used at high doses for the long term, ie more than a few weeks, it can cause osteoporosis, high blood pressure, weight gain (sometimes massive), diabetes, raised cholesterol, cataracts, poor immunity to infections... I could go on - there are 82 documented side effects of pred, noone gets them all, some get almost none but they are a risk and some are worse than others. One or two are life-threatening. You will almost certainly gain some weight, it will settle around your waist and face and neck, and most women get very upset about the change in their appearance.

When this was realised, doctors got very scared of using pred - some of these side effects take a long time to appear, a few can be very serious - and a certain generation have it built in we must be on as little as possible for as short as possible a time. Which would be fine, but PMR requires what it requires to manage the ongoing inflammation. It doesn't just cause inflammation that is dealt with by a good dose of pred and then you can stop. THAT is why no doctor will leave you on 20mg forever just because you feel good there - if you were found to need 20mg over a long period then it might actually cast some doubt as to whether it were PMR rather than another inflammatory arthritis. 

By the time you have been on pred for a month most of the existing inflammation will be dealt with and you can start on the search for the right dose for you at the moment, which should be lower. With, you would hope, fewer side effects but that isn't always the case. 

The consensus in the medical literature over years is that taking pred as a single dose in the early morning most closely resembles the way the body makes its own cortisol, a natural corticosteroid and essential to life. The side effects are due to the presence of excess steroid in the body and by taking it as a single dose you allow the body the longest amount of time to be free of steroid. It only takes the body a couple of hours to excrete most of the pred but its anti-inflammatory effect lasts for between 12 and 36 hours, for most people long enough to keep them going to the next morning. The most efficient clearing out of the inflammation happens soon after 4.30am when the cytokines, the substances that cause the inflammation, are shed in the body and get to work. The optimum time to take your pred is actually at 2am - the peak blood level is achieved at 4am, ready and waiting to mop up the cytokines before they get stuck into the tissue. There are a few people who do just that! When you take the pred in small amounts over the day the maximum effect isn't there at the peak time when it is needed, the cytokines are only shed once a day and you are keeping pred present in the body for four times as long, at a lower level it is true but there is little time when the body has almost no pred. 

Why your rheumy did it this way? No idea - there are a few who do it that way but they are a definite a minority and the experts I work with all say "single dose". Occasionally a patient has night time pain because they are "12 hour" people. Then splitting the dose, approx 2/3 in the morning, 1/3 in the evening helps the night pain and morning stiffness. Patients who have tried your way and the other way usually say it works better in one dose. In many other illnesses you might take it spaced like that - PMR isn't "many other illnesses"! Though persuading a doctor who has never had it themselves is sometimes difficult.

And in case I haven't already said (I've lost count this week, sorry): here is a link to another thread on this site. In the first post you will find a load of links to useful sites with info and other forums here in the UK plus a link to a couple of papers about diagnosis and management of PMR. 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Further down the thread, posts 5/6/7? (can't remember) is a "dead slow and nearly stop" reduction plan for pred - with simple explanation and justifications.

All makes good bedtime reading.

Wrote down your good bedtime reading, and much appreciation--

Barbara

Dear tavidu and all,

I guess I've got people confused. The story is: I don't want to up the dose, rather I'm wondering if I can just stay on it while I experience some tolerable pain--in other words, not rush, rush to lower the Pred.

No one else seems to be doing this, am I right?

Best to all, Barbara

Sorry to butt in but that's right. See my reply below but slowly, slowly does it no matter what your clinicians say. I was on 15 mgs for 6 weeks, 12.5 for 6 weeks, then 10 mgs for 6 months, then 9 mgs for six weeks. And my Dr was great I have blood tests every 3 months and no matter what they say - well, after being on preds they've always been good, my Dr always asks me "but, how do you feel" lucky for me throughout these stages I was fine so reduced. Also read the PMR Bristol plan, if you put that into your browser bar the document should come up, and see that the gold star treatment really is slow. Christina 

Thanks!