Latest (May 2022): CRP 3.0, ESR 37--> 15mg Prednisone
Last (Jan 2022): CRP 0.89, ESR 16--> 10mg Prednisone
And my new Rheumy thought I was going to be normal. Going in the wrong direction. For reference, in Jan I was only on 10mg for a week prior to labs. Previously I was taking the initial dose of 15-20mg. Also, I have been only taking 15mg for a week or so prior to the most recent labs. The latest labs are most likely the highest I have seen.
You may need to be on the watch for other symptoms suggesting the "PMR" isn't "just" PMR. It can be the first signs of LVV or GCA (large vessel vasculitis and giant cell arteritis) developing.
Did you have any symptoms as the blood markers were higher? A single raised set of markers without accompanying symptoms shouldn't result in a knee jerk raising of the dose but be checked a week or 10 days later to see if there is a trend since neither CRP nor ESR are specific to anything and a wide variety of things can result in them going up.
Did you really drop from 15 to 10mg in one step? That is asking for trouble in our experience.
I am never completely symptom free, but "no" I have not been having an increase of symptoms at the time of the most recent labs. Matter of fact, I feel pretty good at 15mg.
Yes, reduction from 15 to 10 in January was irresponsible of me. I am to blame.
That is actually how my doctor reduced me!
Mine wanted me to do that too. I refused and dropped 2.5mg to 10. Then .5mg thereafter.
As PMRpro says one set of results shouldn’t create a knee jerk reaction from doctor, but they do need to be checked again, and if similar or even higher then further investigation required.
The fact that NSAIDs worked well for you might mean that you may also have something other than PMR. The important thing is how do you feel rather than what do the labs say?
NSAIDS worked adequately when I was not on prednisone. I have not routinely taken NSAIDS while on prednisone since prednisone has worked. On the current 15mg regime taking it as a split dose has provided me pain relief. I feel pretty good.
My labs did decrease after I started taking prednisone down to almost normal levels. Last labs I took while on 10mg of Prednisone was late January. I was only on 10mg for a short period of time prior to getting labs. Previously, I was on 15-20mg. This time, I have only been on 15mg for a short period of time prior to getting labs drawn last week.
Having something other than PMR is always a possibility. I have been worked up extensively. There has not been anything else that has been obvious, thus I am not going to worry over it.
Thank you
Why did you go from 10mg to 15mg?
Symptoms
Did your doctor suggest you increased to 15mg? What were the symptoms?
Me follow doctors advice, haha.....no, I increased the dose because I felt the typical PMR symptoms for the past couple months. Muscle aches, stiffness, fatigue and overall crappy. Since the increase I do feel better. Now, I will follow my doctor's advice and do what I need to reverse course and recover.
I'm just wondering 10mg was to low and allowed inflammation to run rampant the past couple months. Again, I was only on 15mg for a week prior to lab draw. My guess I have not been on the 15mg long enough to show significant lab changes. Don't know how long it takes for the markers to decrease following a dose change.
Depends - can be longer if the dose you are on isn't loads higher than you will need.
Hmmm - I would say that anyone who finds NSAIDs work well needs to be checked VERY thoroughly for something else. I know the old guidelines said NSAIDs as first line but they almost never help. Have they looked at anklyosing spondylitis? The signs can be VERY elusive in the early stages and the young onset in a male is suspicious.
Yes, I had an extensive cancer workup prior to coming to this diagnosis. I do have degenerative spinal disease specifically to the lumbar region.
I agree. NSAIDS not working is one of the primary hallmarks of PMR. If they worked I am shocked the doctor gave you steroids as steroids are a last resort for conditions where nothing else works.
As stated above, NSAIDS worked adequately while not on prednisone. As soon I was put on prednisone I realized I was pain free. In other words, NSAIDS did not work to treat my symptoms.
I think where we are getting hung up is that with PMR, nothing but steroids works at all, even a little. So if it worked some… adequately even… then it most likely is some other condition similar to PMR but not PMR. Steroids can work for many conditions that also respond, partially or fully, to other medications including biologics, etc.
I usually get my bloods taken a couple of weeks after a reduction. It may work best for you too.
I had my bloods done a couple of weeks ago - my CRP was 313 - honestly. After 18 hours waiting to be admitted, outside my local casualty in 5 different ambulances ( the crews kept finishing their shifts) I was finally let in and treated for an acute kidney infection and sepsis.
As the triage nurse said as she was collecting my newscore obs from one of the waiting ambulances - "Welcome to the broken NHS"
Suffice to say , after a subsequent 30 hrs being treated in a corridor on a trolley, before they finally found me a bed, I'm still feeling "a bit broken"
So sorry to hear that Andymurph. Hope you’re feeling a lot better soon and that your faith in the NHS will be restored.
SMH4CRNA. My ESR was 96 when I was first diagnosed with PMR. Went down to 72 on second blood test. Unfortunately 9 months later I was diagnosed with something else on top of the PMR. I’ve tried to deal with both diagnoses alongside each other.
Nothing wrong with the staff. Private finance initiative hospitals are weighed down by debt. I believe it's something like £38 billion in the UK at the moment . No hospital can function properly servicing the debt that they are in.We can only hope parliament can put politics to one side and resolve the problem.
"Nothing wrong with the staff" = other than there simply not being enough of them.
PFI hospitals that were built with a considerable number fewer beds because everything was going to be streamlined and done as day case or care in the community. So now when demand has increased - there are no beds in the hospital so that the ER can be emptied to creat through-flow. And that impacts on the ambo service as they provide waiting space instead of picking up the sick from home. But they get the blame for long wait times for 999 calls as they attempt to cover for GPs not seeing patients when they are "litle sick" so they become "big sick" - too many Tesco managers in the NHS still ...
As others have said, please be on the watch. The very first time I got down to 15 months ago, I had to go back up to 40. I'm a GCAer and now on Actemra which neutralizes the blood test...always normal. I'm glad you can monitor yours and follow up accordingly. My best💕
This is for keep talking … what else were you diagnosed with besides PMR?Wondering as every time my ESR is in the 70s
Thanks
Asking for ESR & CRP numbers
Changes in Vision - blurs, floaters flashes, CRP & ESR Markers changed, How to manage Prednisolone?
CRP and ESR
Raised CRP ESR
Raised CRP to 5.3 and ESR to 25
