How do YOU decide whether and how much to change your dosage?

Thanks, Eileen, especially for the portion where you describe what you, personally, are doing. That was the information I can best use as guidance for my thinking.

Now that you're here I have a related question that I think you are well equipped (through your extensive research) to address. 

There is clearly a balance that must be reached between taking enough pred to be functional and yet minimizing the period of time it takes for the PMR to decide to leave you alone. In your study of PMR have you found any research that has been able to link the dosage of pred to the length of time that PMR stays with you?

That is, if one takes enough pred to eliminate, entirely the stiffness and pain from PMR, then does the PMR remiss faster? Said another way, if one takes only enough pred to make life tolerable, does the PMR say "well, if that's all she's going to do to me then I'll just stay around even longer!"? Understand that I have no idea whether such data exist.

My tendency during my 8 decades + has been to take minimum medication for whatever ails me. But PMR seems as if it may be a different sort of dis-ease.

Comments?

No - PMR comes when it wants and goes when it is ready. The pred - or anything else - has no effect on the underlying autoimmune cause of the inflammation. There is no link between dose of pred, time to diagnosis, other medications used as "so-called" steroid sparers that seem to shorten the patient journey - other than being careful to NOT reduce too far or too fast and cause a flare. The most common cause of a flare is problems with reduction - and for every flare you end up going back to a higher dose and starting over which in the end is slower than reducing apparently very slowly. Plus, if you get into a yoyo situation with your pred dose you do run the risk of each subsequent reduction being more difficult. It isn't known why but it certainly appears to be so.

There are not yet any studies on the most appropriate dose or best reduction approach. Anecdotally, the "Dead slow and nearly stop" approach I advocate does seem to minimise the yoyo effect and patients have fewer flares. It is about to be used and looked at in a study in the north of England. 

The ideal is you ARE taking the minimum medication for PMR too - the lowest dose of pred that works - and NOT adding in any other stuff that hasn't in most cases been shown to help, I firmly believe that the patients for whom methotrexate helps didn't just have PMR, the PMR was most likely also a symptom of RA or another arthritis where mtx will help. All I take for PMR is pred, nothing else at all, it is all I have ever taken. I have other medication - for atrial fibrillation which the cardiologist believes was due to the autoimmune part of PMR damaging the electrical system in the heart. But that is another thing altogether.

Eileen, your information is VERY helpful.

I would like a lengthier definition of what you term a "flare". Is it a regression to a condition almost like the original , horrible stuff before the first pred? Or are you referring to a different "being ill" that is not the terrible stiffness and pain, but things such as nausea or dizziness or blaaaaah.?

philosoph4 and Eileen,  Really interesting discussion.

I'm certainly learning a lot from these exchanges. I hope others are, as well, Juno

No, by flare I mean a return or increase of the PMR symptoms. It can be due to a careless reduction of the dose of pred you are on, going to too low a dose or doing it too fast. OR it can be because the underlying autoimmune disorder becomes more active and the symptoms increase, becoming too much for the current dose of pred and requiring an increase. You might also develop a flare in symptoms without either if you really overdid things but that would usually settle down like any post-exercise muscle pain, but it might take much longer than you would normally expect.

In PMR your muscles have become intolerant of acute exercise - use them too much and you will get sore and stiff muscles, whatever dose you are on. That's why we keep emphasising the pacing and resting appropriately. If you do a bit and then let your muscles rest they won't react so violently and you will achieve a more even ability to function.

Good, clear explanation, Eileen. Again, your knowledge and experience are really beneficial. 

I hesitate to get too far away from the general topic of pred reduction, but you have raised in my mind another question. Suppose, as in my individual situation, the only muscles that seem to be involved are lower back and upper legs. When I play pickleball I use them a great deal. Pickleball playing doesn't seem to cause any other muscles to get stiff or be painful. (Yes, compared to most participants on this site, I am very fortunate.) So a reduction in preds might not be the source of the stiffness/pain? Perhaps I could reduce preds more if I didn't play pickleball every day?

More than likely - but the exercise is good for you! (I confess I'd never heard of it, thank goodness for google!).

HOWEVER - I wonder of getting some physiotherapy advice or (everyone know what I'm going to say don't they  ) asking a Bowen therapist ( , they were right)

If it were me, I would wonder if there was something extra going on in your lower back, causing tight muscles which themselves can irritate/trap the sciatic nerve and lead to referred problems in the lower back and upper legs. 

I had considerable problems with low back and hips that turned out to be mainly due to myofascial pain syndrome and resulting tight/tense back muscles. I had various approaches to deal with it - physio and Bowen are 2 you can access without doctor referrals.

Fascinating experience, noninoni. The disease and the preds are truly exotic items. Individuals react in very individual ways.

angela, I certainly hope that you can reduce the pred. I hope that I can, also. I, like you, consider myself to be fortunate to have as little pain as I actually have. So many here are far worse off than I.

Thank you, yes we both realise this and we want to shout at everyone. We know that we are not through this but we will get through it. Ok it is so frustrating, but we can deal with honestly. We can get through it knoŵing we are not on our own (although it feels like it). It might seem at I am getting through it but I'm not, honestly. Have to c Rheumy on Thursday for blood results. WE can do it xx

I took the approach that somehow or other there would be an end and I would "get through it". I figured I had a choice about "how".

Being positive has been sometimes difficult, but never impossible. I guess I'm fortunate that the dark times were few and short, and I could dig my way out - starting point was "I'm having a dark day, what can I do about it?".  Which is of course easier said than done when all one wants to do is sit and stare at the wall and vegetate, or wallow in self pity, knowing its a never ending downward spiral of despair. Some days it doesn't really help knowing there are people worse off. A selfish cry of "why me?" seems much more useful, and I can rightly curse everyone around me for not understanding. And I can always blame it on the pred.

But "give in" I would not. It always gets better. Its a long journey to be taken one step at a time, knowing there's another step to follow. The more steps the easier, and the end gets closer. Swimming across the current not against it. Its easier for others to help if I at least am trying. The sprial becomes ever upwards. Faster.

Perhaps silly sounding but even just thinking and writing it down in the past tense is a small but important victory.

Yes, of course, we can do it.

The blood levels are only a guide - it is symptoms that should always play trumps. If the symptoms are increasing they mean you are probably on too low a dose - or doing too much. If reducing the dose doesn't make any difference and the aching remains steady and acceptable there isn't any reason really not to reduce. But if that then results in needing painkillers to cope then you are opening another box of unknowns - all painkillers have side effects too, especially when you use them longterm. Even if a doctor says it is fine.

Paracetamol can cause liver damage even at the recommended max dose, it and others can all lead to gastric bleeding, some will damage your kidneys. Using them occasionally for a few days at a time is usually OK - but longterm use is a very different matter. In PMR, pred is usually the most effective pain killer.

Here is my dilemma:  I can't seem to know how to judge the amount of achyness I should allow myself to have on a current dose of prednisone.  I know the rule that has been quoted on at least a 70% reduction of pain is the goal.  And from the initial onset of excrutiating pain in my left shoulder and neck, I have achieved that goal but never have been without pain that I describe now as constant aches (in my shoulders and hips). 

Does this mean I should increase my current 15 mg dose of Prednisone so that I don't have these aches?  These aches are, for me, very uncomfortable and I want free of them.  I hesitate to take a higher dose of prednisone because I have so many side effects that are also very uncomfortable. 

How much pain(ache) should a person accept?  Is there an answer to that question?  Will we who have PMR ever be mostly pain free?  Honestly, before PMR developed in my body, I had no pain problem, no aches at all even at my age of 69.  Since I have been lab tested to rule out RA and many, many other autoimmune diseases, I am fairly confident that my current pain is PMR only.  Should I dose until I have no pain? 

Thank you for the invaluable information and guidance you give.  A big thank you to all who share your experiences.  What would we do without each other?  My doctor is very sympathetic and kind, but since he does not have PMR, I know he can't possibly understand how it can alter ones life. 

 

Padada sadly not many of us can claim they are totally pain free with PMR. If you found things worked well when you first took pred you should try and keep to that level as you reduce although you will have ups and downs due to the reductions. You have PMR so you cannot hope to be the same as you were in your previoys life, although it would be great if it worked like that. 

The first dose you were on, the highest, should provide your guide - you should get to a stage where the symptoms are steady and the blood markers in normal range. Then you reduce to find the lowest dose that achieves that same level of relief. No, you may never be pain-free, very few people are. Especially if you have other things going on, bursitis in the hips and shoulders is often resistant to oral pred and takes quite a bit longer to fade - a local cortisone shot into the area or even into the joint may achieve more and faster. Or you may have other muscle issues that a physio or Bowen therapist could help with - that may not be 100% successful for everyone, you can only try.

I have no idea whether I still have PMR, I'm on 4mg on the way to 3mg, but I have been pretty much pain-free for some time now but I had a lot of back-muscle issues that had to be dealt with to get there, pred doesn't always do it all.

This is such a helpful forum.  I think i will ask a question too!  I am on 5mg, thinking about going down to 4.5 (for some of the above rasons).  When i use the pill splitter on the one mg tablet, it mostly crumbles; is there some other way of cutting this tiny tablet?

I have great success just snapping it in half with my thumbs and forefingers.

 

;Thanks, i will give it a try...

Is it one with a score along the middle? There is no way I could snap anything with my fingers mind!

 

I'm told it takes some practice to cut the smaller tablets - but bear in mind that you can make 4.5 from 2.5 (half a 5mg tablet if that is easier to cut) plus 2 x 1mg.

I also cannot cut tablets using my husband's pill cutter - identical to but older than mine. There are various models and some are better than others at cutting small tablets.

No, no scoring.  The 1 mg snaps in half just fine using my fingers.  Same with splitting the 5 mg.  

Very clever Eileen - never was too sharp in math class...

Honesty compels me to admit that it was someone else who pointed it out some time ago!  I just remember such bits of information...

I would just like to mention..be careful when cortisone shots for bursitis.  I was weaning down my pred (on 5mg) when I kept getting bouts of bursitis in my hips.  My GP gave me the shots about every 3-4 months.  I didn't realize until too late...(got completely off the pred in August that this was a problem.  Had a major flare in Sept.  My rheum told me that the cortisone shots were 'messing' with my reduction.  Adding any steroid, oral or injection., is the same.  So I was down to 1 mg but receiving 60mg shots in each hip...therefore, I wasn't really reducing !  I went back to 20mg in sept..dropped to 17 in 2 weeks ..pain was completely gone.  I've been reducing by 1 mg a month.  So far so good.  I do not want another flare!  I'm going to take it super slow this time..no shots!

Not silly sounding at all but do u think u might be suffering from depression? Maybe you need help with that and it will help with coping with everything else? Please talk to your Doctor. Good luck