PMR - CK blood test

I just got printout numbers from my surgery which says, quote - CK down to 786 - unquote.  As I recall my doc was delighted that number was down significantly from diagnosis day.  Does that mean I havent got PMR but, as you put it - other syndromes that present similarly but where there is muscle damage.-   ?

If anyone can answer this Id be grateful as for some weeks Ive thought my symptoms and response to preds. dont wholly fit with pMR sufferers here.  I see the specialist in a month and would like to give him some evidence if There is any.

Remind me - how did you respond to pred? What symptoms? Are you on a statin by any chance?

  Im not on statins, tho was briefly years ago.  I first saw the rheumo, 6 months ago, about severe weakness and tiring.  Id had aortic valve replacement 4 months before that, which medics were pleased with, but I felt I shd be gradually getting stronger, and I just was not.

First 2 doses of 10mg pred I felt a dramatic improvement so PMR was diagnosed on that basis ( because Ive got other conditions,  more investigations like biopsy were sidestepped at the time).  For a few weeks I felt somewhat better, then slipping back, then pretty lousy .   GP increased pred to 20mg, dropping to 16mg over 4 weeks.Right now I feel worse than at any time, cramp in thigh, hardly walking, I actually used garden centre's  elec buggy today and it was a huge effort to go at all. 

However for several months I have been taking Ad-cal and pred dose, along with other possibly wrong pills and wrong food all swallowed together at breakfast.

Im wondering if I feel bad because pred and Ad-cal have been blocking each other out or possibly actually doing harm?

Hospital phone-a-nurse system returned my call today, saying Yes!  leave 4 hrs between Ad-cal before  pred. or  spinach, rhubarb, cereal, bran . . . loadsa stuff no one had told  me about.  

Not clear about spacing those last, can they all be taken together?  Very confusing.  Nurse message said to ring back on Monday if I was confused, which I am and will,  but meantime does anyone know how to take Pred with Adcal or various  iron-rich foods?

just  a PS to my reply to you just posted!  Started on 15 mg pred not 10mg as I put in that post

I think it is unlikely that taking pred and Adcal would make that much difference because a lot of people do it without any apparent problem but if you sort out when you take what you can see fairly quickly. In the PMR we discuss here the effect of 15mg pred should be fairly clear - they look for about 70% improvement in symptoms within a few days. It isn't a 100% perfect result and you have to do your part too and rest and pace yourself - your muscles are intolerant of exercise, won't tell you that you have done too much and will take much longer to recover. Even a walk has a similar effect to running a few miles without any training!

I'm not clear what you mean by "Not clear about spacing those last" - if it is the foods then you think about that after taking the pred as early as possible in the morning which is when you should be taking it, all in one dose. The sooner you take it after 4.30am the better effect it will have on the inflammation - the substances that cause the inflammation are shed in the body at about that time so there is less inflammation for the pred to deal with. Small amounts of dietary calcium are OK - so most breakfast dairy will be fine. Hadn't come across cereals but then, I don't eat cereals anyway so it wouldn't be a problem. 

Then take 1 of your Adcal with your lunch and the other with your tea or dinner. Calcium and vit D is better taken with a small amount of fat to transport it - not a lot so a cup of tea with semi-skimmed or whole milk is enough or a bit of butter on bread or potatoes. Never use skimmed milk - you won't absorb the calcium it contains even if it does have more than the others!

Having taken your pred all together in one dose in the early morning you will find it usually works better and faster than taking it in a split dose or later in the day. It should help your sleep pattern too - though not everyone has a problem there and some people even take their pred in the evening for various reasons.

However - if the pain and stiffness aren't being dealt with by 20mg pred I would question whether it is PMR you have even if you did improve with a couple of doses of 10mg. Though dropping from 20mg to 16mg over 4 weeks is a strange reduction. You should have stayed at 20mg for at least a month - and then maybe reduce 1mg at a time but stick at the new dose for at least 2 weeks before dropping again.

I wonder if the thigh problem could be related to your lower back. Something called myofascial pain syndrome can lead to thigh pain when it is affecting your lower back as it causes spasmed muscles which pinch nerves and cause referred pain into the thigh. MPS further up the spine can lead to pain in ribs or shoulders and neck. It is often all confused with PMR problems. Over and over people have complained of similar problems and I have suggested trying Bowen therapy - and it has helped a lot. Maybe it doesn't remove all the pain but there are great improvements.

If you aren't able to move and at least walk a short distance every day you are at risk of muscle wastage and some people do have that because of pred anyway, pred itself can cause muscle wasting. The other thing I would say is - you use the word "weakness" as opposed to stiffness and difficulty doing things. PMR isn't usually associated with WEAKNESS as such - but what we mean by weakness and doctors mean by weakness do seem to be different. The fact you have a raised CK also suggests to me this isn't PMR pure and simple or even not PMR at all - and it is on the basis of the CK that I would question the doctors and maybe ask about a muscle biopsy at this stage.

On the Johns Hopkins info site there is a question which seems relevant and which you might find interesting:

"I just got over PMR (stopped prednisone in Jan). I now have muscle aches through out my body. My CPK level is 234 and sedimetation rate is 26. I have angst about heart attacks. I can not find anywhere what 234 means. I know it is high, but how high does it go to? I also know that there are three different kinds of CPK and I am hoping mine is the third one. What is the treatment for elevated CPK?

Answer

CPK also called creatinine kinase (CK) is an enzyme (chemical) found specifically in muscle cells. One form of CPK is found in heart muscle cells, another in the skeletal muscle cells. CPK is also found in brain cells. When these cells are damaged for any reason, the CPK is released into the blood and can be measured by a blood test. If the heart CPK (CPK-MB) is elevated it can mean that the heart is damaged which can occur in a heart attack or in conditions in which the heart muscle is inflammed such as viral myocarditis. Skeletal muscle can be damaged in trauma such as in severe injury to the muscles, or after intense exercise causing an increase in the skeletal muscle form of CPK (CPK-MM). Certain drugs such as cholesterol lowering drugs (statins) can damage muscle and elevate CPK. Other causes are alcohol, viruses, hereditary conditions. Finally CPK can be elevated in certain autoimmune diseases that cause inflammation in the muscle such as polymyositis or dermatomyositis. 

... an abnormal CK level requires investigation."

The doctor responding to the question does not put it down to the history of PMR but says other causes should be sought.

I think you need to be firm with your GP at least and insist on someone investigating this further and not just accepting the idea of PMR. In fact, just recently someone on another forum asked me about the problems a family member had. They were very similar to PMR and had started about a week after surgery. The doctors were insistent it was a response to the anaesthetic and would soon wear off  - but the post-op problem always starts immediately post-op and improves, this lady was getting worse. My friend went with the lady to her GP and helped her insist on urgent referral to a muscle specialist in the local hospital. This doctor arranged a clinic appointment within a few days - and admitted the lady from clinic for treatment and investigations. The final diagnosis was polymyosotis. 

It's time for a rethink by your doctors Gentian.

I will take account of what you say but not sure just how.  I am now separating pred and Ad-cal tablets by 4 hours, which may help,

but now Id like to ask you if there's a painkiller ok to take with the pharmacopia of drugs I already swallow. Having claimed here that I didnt get pain and so cdnt have PMR, last week have developed crampy thigh muscle, seriously Ow.   What do folk here take, if anything?

 I will pester the docs again, but they are - just at the moment - tougher than I feel.

Would feel better if husband hadnt invited nice but seriously High-Maintenance couple to stay for 3 nights (and days)next week.  When I say How can I cope?  he urges me not to worry about it.  Yep, ok.  Maybe I move out.  Will let you know.

Luckily mine is never likely to invite anyone to stay but when our daughters come to visit he pays for the village restaurants - they both grew up in Germany and want things like schnitzel and Kaiserschmarrn (a sort of pancake dish) and pasta and pizza (we're in Italy). I don't make any of them anyway - I leave it to the experts! We do grill and raclette is always a favourite - I just stick the machine on the table and plates of cheese and the "stuff". For anyone who hasn't met it it is like telling your guests to make their own pizza topping in little pan under a grill - perfect for the fussy - and you eat it with french bread or baked potatoes. I admit it was hard work when we did it with OH's brother and wife as we had to explain to them in words of one syllable how to do it - for a couple with PhDs they were a bit thick.

Painkillers - hum, rather more difficult. Does paracetamol (acetaminophen, tylenol) help you? Many doctors still give NSAIDs even when patients are on pred - just be careful and take any you try with food.

No prizes for guessing my next suggestion: have you a Bowen therapist or a physiotherapist near you? They may be able to help the pain in the thigh which could be stemming from a low back problem. Though having said that - what sort of pain? All the time or just when you walk/do stairs? 

thats this changeable PMR, innit?  I will search for a Bowen therapist. No idea what they will do, but sounds good.  (Nearly as good as grumbling even)

As for "prob I don't need to do either" - oh yes you do. One of the ways of managing this changeable beast that is PMR is to average out what you do. Think about it - you have a good day so you do lots and the next day you feel rubbish. You have a bad day and rest - and the next day you feel good. Isn't there a pattern there?