CRP Levels

[JJ2013]

I am beginning my third year of PMR and prednisone. My recent blood work shows my CRP is still at 25. It's never been below 25. Shouldn't the prednisone be lowering this level of inflammation? It doesn't seem to be so what should I do? I am currently taking 9 mg. Pred reducing from 10 two weeks ago. I hurt all over - neck, shoulders, arms, hips, lower back and knees. I know some of the pain in Fibro. Today I feel almost flu-like - I ache. This is all very frustrating.

[Hidden]

Yes, I agree with you that the steroids should be reducing the inflammation. That's why we take them! What does your rheumi/GP say about the raised CRP? When my CRP is raised (which it is at the moment) I stay on the same dose or increase the dose until CRP starts to lower and this is usually agreed with both GP and my rheumi. Have your Vit D levels been tested? Are you low in potassium? These things can add to our problems

[PMRpro Ambassador]

It will only lower the markers if it is high enough - and it sounds as if the dose isn't enough to control the inflammation being caused by the underlying autoimmune disorder that causes the symptoms we call PMR. Were you OK at 10mg? One mg may be the difference between a dose that controls the symptoms and one that does not. You could also be having a flare in the autoimmune activity which also happens - but since you reduced just recently it is impossible to tell which it is.

You aren't reducing relentlessly to zero come what may - you are seeking the lowest dose that manages the symptoms until the autoimmune part of PMR burns out and goes into remission. By the sound of things, at the moment you are below it.

I was unable to go below 10mg for about 4 years and had two major flares in that time, necessitating a return to 15mg each time. This time I have got to 4mg (just, 5mg is definitely better). That's the first time I have got that low in 5 1/2 years.

[JJ2013 in reply to PMRpro]

Thank you for the reply. I get very anxious at times about this PMR and all that goes along with it - basically the continued use of prednisone. Your reply made me realize that I am not alone in this struggle and that I must try to be patient. It's been a roller coaster ride and I want off! ?

[daphne_retired]

Understand how you ache and about the flu, I find it can be hard to know if I have flu or not sometimes. The nauseous tummy and the feeling as though my world is ending, (sick with worry), has been a common problem for me this last seven years. My mucus is a guide. If clear and running free, I assume it is an effect of the cause of the pain, like you, I have all over my body. If the mucus is coloured and thick, I know to get on with the cider vinegar etc. because it is an infection. I have not used anti-biotics for nearly ten years, becuase there has been no need. It can be hard, but when the pain allows it, gentle exercise and a good diet. I have raised beds, grow garlic and fresh veggies, play the piano, care for three chickens and eat four fresh eggs a week, and the joy of giving my family the other 12 or so. Please note I am still awaiting an interview with my rheumy and not currently on pred, but should be according to the people on this site. (previous 40mg/day). My GP did not get my CRP measured ever. I am not sure why. So can't help you with anymore info. Keep at it. D

[suzy1959]

If you are hurting all over and feel flu-like, then I would say that you are flaring due to reducing too far. This has happened to me many times. My CRP does go up and down somewhat but has never got back into the normal range in the 3 years I have had PMR.( ESR has finally got into normal range in the last few months). I actually had a blood test last month on the day that I later felt awful, and when I got the results back, it had gone up from 13 to 24., suggesting that what I was feeling was showing up in the blood. I had been on 9.5 mgs. Pred. for 3 weeks, meaning then that that was too low a dose. I am currently on 12mgs. and still not consistently feeling quite right- a lot of fatigue and painful thighs. I think 11mgs. will be about right for me when I reduce again, at the moment, much as my Rheumy would like it to be a lot lower, as would I!!

[JJ2013 in reply to suzy1959]

Suzy, thank you for the response. When you say "painful thighs" what areas do you mean? My Dr. says PMR pain would be inner thigh or groin area, but I hurt in my outer thigh area and in my "rear" down the back of my legs to my knees.

[suzy1959 in reply to JJ2013]

Sorry- I have only just seen your question! Yes, my thighs hurt all over-quad, hamstring and buttock muscles in particular. When at my worst, then both groins malfunction too. They are also very tender to the touch. I have stopped worrying about what hurts , where and when as it varies all the time. Again, when at my worst, my shoulders and shoulder blades are also painful, sometimes my neck, ribs even....I could go on. What matters to me is that I have a clear diagnosis for PMR and that is what I have got and that informs how I deal with it.

[PMRpro Ambassador in reply to suzy1959]

Have you ever had cortisone injects for trochanteric bursitis? What you describe is typical of that . Higher dose oral pred will help it some but by far the best way is to use local injections - and that allows the oral dose to be reduced. I've had it a few times alongside the rest of PMR - the last 2 times the orthopods here have given cortisone injection and I have since been able to reduce way below the 10mg where I had been stuck for nearly 4 years.

[Hamburger5059 in reply to PMRpro]

Am on 10 mg just starting due to infection in the body. Didn't leave me with how high the CPR level was, the nurse from Rheumi called this morning and sent me to pick up presc. Will see doc again in 2 weeks. Am in constant extremely pain all over. Want to cry when it gets soo bad every 3 days I go into spasms

[Hamburger5059 in reply to Hamburger5059]

Flair?

[Hamburger5059 in reply to Hamburger5059]

Flair ups?

[Hamburger5059 in reply to suzy1959]

Suzy Hi,

I have these tremendous pains in only one and the same left shoulderblade. It comes on more often, amongst the pain all over, but when in the shoulderblade it kills. Have you had this as severe a symptom as I?

[Annodomini]

If you feel like flu do bear in mind that you might actually have flu. I'm still recovering from a nasty bout. One of the strains of the viruses included in this winter's immunisation has mutated which means we have reduced protection. Believe me I felt lousy, but my PMR was not exacerbated.

[JJ2013]

Thank you for the responses. I don't have a cough or cold symptoms or fever, so I know this is not the flu. It seems like my whole body is aching though and I guess it's the prednisone reduction or a flare as mentioned above. I am also very fatigued and sleeping much more than I normally do. I will also admit that I am very anxious (after two years) to get off the prednisone. I worry about what it's doing to my body, but I also worry about what the high inflammation is doing to my body. Its all very frustrating.

[30048]

i do not know what your age is but i was told by a new doctor. (I have had GCA and PMR for three years ) that my SED rate was normal for my age. I am 78 and it was 32, which I thought was high. My sed rate has varied from 104 at the onset to as low as 3 when things were under control. it was the FIRST time I had been told it varied as to your age.

[PMRpro Ambassador in reply to 30048]

It is said to rise with age, only up to middle age though. It is zero at birth. Why does it apparently rise with age? Probably because there is latent inflammation present in a lot of the older people whose results were included when determining the so-called "normal range", the range that covers 95% of the population. More recent thought says if it is above 25 then there is probably some inflammation somewhere.

On the other hand, if you have been down to 3 whilst on pred that is probably your real personal "normal". Mine is 4 - but it never went above 7 anyway.

[bpark06 in reply to 30048]

It's divided by two for men, add ten then divide by two for women. I'm in processing of learning all this because my diagnosis is mixed so anyway.... man at 32 is technically good if he's at least 64. I'm 35, my level is 41mm/hr but in the twenties I'd be safer.

[Sallyaches]

I am new to all this but my personal experience may help. I was eventually diagnosed and started on prednisilone 15mg before Christmas . This did not have a great effect, it was increased to 20mg which made things a bit more comfortable. But my CRP was 86 initially which only dropped to 64mg after a month. I too felt like I had flu, I was then referred to a rheumatologist. I think you should ask your G.P.. To do this, in fact I think you should demand it.

I have now started on different treatment in addition to the prednisilone and had more blood tests and a PET scan.

I don't want to sound alarming , I think I just want to say there is no virtue in being patient , if the steroids were the answer they would have worked by now and over 10 weeks is a long time to be hurting, in your shoes even if the second opinion confirms what your G.P. says it would put my mind at rest.

Best of luck

P.S. My last CRP was 2, and I feel a bit more like my old self.

[JJ2013 in reply to Sallyaches]

Thank you. I agree I need a second opinion and a rheumatologist.

[Hamburger5059]

Ditto, so sorry feeling the same...