Can I have PMR with normal CRP

[krillemy]

New in this forum.. I am 50 years old (woman), and have all symptoms of PMR (and maybe GCA). However due to normal CRP I have been put through all kinds of test from ALS ,MR and cancer to polymyositis and Lyme disease (borrelia). They all said that if they did not find anything it must be PMR ON TILL they changed their mind. However my GP had put me on 15 mg of pred. and a miracle took place in 3 days. I have not been working for a year so I was happy (still is). I do not have a diagnosis, and have had to persuade the GP to follow the slow tapering scheme for PMR.

My questions to you is:

Does a normal CRP rule out PMR?

Have any of you experience muscle wasting? Like in thighs and upper arms?

[SnazzyD]

In a word no. Some do not have normal inflammatory markers, up to 20% I believe. Some have markers that are raised for them but still within the normal range but this doesn’t seem to recognised by docs.

Pred can certainly cause muscle wasting, especially thighs and arms. It and PMR do make you more prone to injury so exercise, though necessary, may need to be pared down a bit. Also, fat deposition can be redistributed to the middle, face and neck front and back, which does reduce with dose but try to keep the weight down by cutting down carbohydrates a lot.

[krillemy in reply to SnazzyD]

sorry, I am not sure I understand you regarding the inflammatory markers? Do all with PMR have that or are there 20% with normal blood tests? The wasting was before I took pred. and when I started pred. my fat distributed from stomach to thighs and bum ei. back to normal. Very strange...

[SnazzyD in reply to krillemy]

20% with PMR have normal inflammatory marker tests.

If you were suffering for a while pre diagnosis it is possible your physical activity dropped, which would have made your muscle bulk reduce.

[PMRpro Ambassador]

No - up to about 1 in 5 patients doesn't have raised blood markers - or to be more accurate, does not have blood markers that lie outside the normal range. That doesn't mean they aren't raised for that patient. My ESR ran at 16-18 at one point which is well within normal range but my personal normal is low single figures. The normal range is the range of results you would find in a large population of healthy people - not the range any single person might show. This tends to be more common in younger patients - and you are at the bottom end of the acknowledged age range for PMR and GCA.

Is the muscle wasting since you have been on pred or while you have had the symptoms? Muscles can deteriorate very quickly when you aren't exercising as normal for you.

[krillemy in reply to PMRpro]

thanks - I check the numbers toomorrow. The wasting was before, and it came with pain, and are only selected muscles. Like the front of my thighs and more in the left leg,

[PMRpro Ambassador in reply to krillemy]

Did you ever have a CPK/creatine phosphokinase test done?

[SheffieldJane]

No krillemy. About 20% of sufferers show no change in their bloods. Glad you are in the clear for all those nasties. PMR though awful, is one of the better diseases to get. You must get your doctor to allow you to treat it properly, or find a different doctor/ Rheumatologist.

[remission]

I have not, but my cousin has been on Pred. for quite a few years and it attacked his muscle and not bone, like it normally does. Best defense is to go to physio, find the exercises you can do - remember never create pain, that creats inflammation - they will give you exercises to start and you can improve from there - and go to the pool and exercise, everyone will probably agree it's the only place we feel normal again and flexible. I wish you well.

[Louisepenygraig]

I've never had abnormal CRP readings.

[krillemy in reply to Louisepenygraig]

Hi, and thanks for your reply. So you where diagnose only based on what you told your doctor? I have a feeling that they do not believe me

[Louisepenygraig in reply to krillemy]

My ESR was raised but not CRP. I'd been going to my doctors for a while with aches and pains and tiredness. I was pretty sure I had fibromyalgia. I started getting worse quite suddenly and my next blood test showed raised ESR. The doctor tried my on Prednisolone and that worked so that was the clincher. Eventually I was diagnosed with fibromyalgia as well.

[Whatalididnext]

I was diagnosed with "Inflammatory Marker Negative Polymyalgia Rheumatica ". I am 53 and was initially told I was too young to have this and taken off Pred and to taper down. I tapered from 15 to 0 in 6 months with the help of a low carb/very low sugar diet. After a few weeks all the pain came bank and then my Doctor referred me to a Rheumatologist who was brilliant and told me you can have normal markers and still have PMR. I had been telling my doc this was possible for months but he would not listen.

I am back on 12mg of pred and all pain has gone more or less instantly. The Rheumy says that I have to taper after being on this dose for 4 weeks at 1mg a month but to stick at a dose that I feel comfortable with and not taper too quickly. He thinks this is why all my pain came back to quick the first time.

He said that you dont just diagnose PMR by blood tests you need to look at the effect pred has and the symptoms.

I was tested for numerous other things when I came off pred the first time to rule out anything else as a lot of things mimic PMR.

[PMRpro Ambassador in reply to Whatalididnext]

Where is this paragon of virtue? He may come here for an accolade!

[Hidden in reply to Whatalididnext]

This is someone who could teach a thing or two to Specialists & GP’s

Excellent Advice & Good Luck 🍀

[krillemy in reply to Whatalididnext]

Thanks for sharing that! I am going through the whole neurological examination again... let´s see what happens

[wouldlovetohikeagain]

Thirteen years ago i was diagnosed with lyme and babesia. Three years ago I was diagnosed with PMR. I have been on prednisone from 10 mg. down to 6. When I was diagnosed with the PMR i asked for the Alisa and Western blot test to see if it was Lyme again. It came back negative which now I know is not unusual at all. Testing is not very reliable. My CRP has been as high as 98 in the beginning now it is at 22.

I have to have an operation on my right knee because of synovitis and a torn meniscus.

I looked up lyme and knees on the internet and there was a perfect picture of my knee.

So I have been doing the protocol in Stephen Buhner's book Healing Lyme and to my amazment the CRP has gone way down and my knee feels just fine. The all over inflammation is non existent in the A.M. and now I know it is the Lyme that has created all the issues I have been dealing with.

What I realize is when you have lyme it never really goes away and when you stress yourself it can come back with an auto immune disease which is the PMR or it can manifest in a number of different auto immune diseases. It is also called chronic arthritis.

I am very hopeful that I have finally figured out what is going on with no help from doctors.

[krillemy in reply to wouldlovetohikeagain]

Thanks! - I am still in the dark in terms of a diagnosis. I will however INSIST on getting an antibiotic treatment for Lymes, even though it has not been diagnosed (incl. a spinal fluied test. What is the most reliable test do you think - 2 years after the bite (or actually many bites - every summer).