Posted , 13 users are following.
I'm wondering if it's likely that in someone who had raised inflammatory markers initially when first diagnosed might not show raised markers during a flare. Does this happen?
0 likes, 13 replies
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Michdonn lbh
Posted
Ibh, I am not sure about every time, but the times that I have had flares and tested I have had raised readings. In fact I can get raised readings by hurting myself without a flare. If I am in pain I have raised markers. BUT we are all different. 🙂
alebeau lbh
Posted
Every time I've had a flare up my markers went up so I think it's safe to say that there is a connection
I have had at least 4 since my diagnosis last November and now I am going to try the slow method of reduction next time
I am at 13 MG right now and still find mornings tough
nick67069 lbh
Posted
It is my understanding that 20% of patients dont' have raised markers even at the beginning , before taking steroids. When on steroids, markers should be under control. Your guide should be symptoms, not markers, because markers can change if you have inflammation or infection not related to PMR.
Michdonn nick67069
Posted
Nick, they absolutely do in my case. Hurt myself markers up, get a cold markers up, over do it markers up, get a flare markers up. If I have pain markers. In fact I have told the doctor my test levels are up and this is the reason why. 🙂
nick67069 Michdonn
Posted
I agree with you, but what would you say to a patient who has no raised markers and pain? I personally give more weight to symptoms then markers, that is what I was trying to communicate.
Michdonn nick67069
Posted
Nick, each of us is different and the way that pain and drugs effect us is different. All I was stating is how it effects me. Some on the forum have PMR and no raised markers. 🙂
EileenH lbh
Posted
Although my markers were apparently never raised pre-diagnosis, in retrospect we have seem that during a bad flare they were raised - but only to 16-18 over a period of several weeks. My personal "on-pred and well controlled symptoms" normal is low single figures so getting to 16 shows a considerable increase but by any doctor's standards they will be returned as "within normal range".
On the other hand, there are patients who had raised values before/at diagnosis who get their levels down to single figures with pred and then the levels rise slightly with a flare but are still "in normal range" so it is dismissed. And there are others who do not mount what is called the "acute phase response" while they are taking pred at any dose as it somehow prevents the liver producing the relevant proteins that cause the increase.
Both those groups would be relevant in your question. There are also patients where the production of those proteins is delayed - patients with GCA symptoms have been recorded as having normal lab results for 6 months or more after the symptoms started.
That is why symptoms ALWAYS trump lab results.
lbh EileenH
Posted
Thank you - very interesting. My question arises because I recently succumbed to GP pressure to reduce prednisolone more quickly than I had been doing. (I had managed to go from 15mg to 8.5mg in one year) I had played it safe and slow, taking advice from the forum, and had made sure I avoided any return of discomfort. Then on a routine GP visit , I was encouraged to speed up, which I foolishly did. At 8mg I started to feel stiffness returning so instead of doing my own thing which would have meant going back up a bit and trying again a little later , I went for a blood test. It came back normal so GP said to carry on. I did! Now at 7mg, my symptoms are not far off those I started with over a year ago. I shall ask for a blood test, hopefully early this week, but I've no doubt I will up the mg, no matter the result. My GP told me last time he'd never had a patient take as long as me to reduce!! I shall refer him to the recent evidence when I go. Thanks again for your help.
EileenH lbh
Posted
I'd bet one of two things: 1) he has never actually had a patient with PMR/GCA before or 2) he's lying/exaggerating (ask ptolemy about that).
I'll take experienced specialist rheumatologist's evidence over a GP's opinion any day. When someone can show me a study that shows a majority of patients can get off pred in a year I may reconsider - but my experiences on the forums and in the charity over 10 years says the Matteson study matches real life.
Michdonn lbh
Posted
Ibh, 3 years on Pred, reduce from 20 mg to 7 mg in about 10 months following my Rheumy's directions right into a terrible flare, had to increase to 30 mg to get relief. Now 2 years later I am still reducing current on 3.5 mg. I learned to listen to my body and reduce when I feel I can. Hope you do not to many bumps on the rest of your PMR journey. 🙂
Anhaga lbh
Posted
I agree with what Eileen said. Hardly anyone gets off pred in a year and I bet doctors who think they do have simply lost those patients to another more reasonable physician. If I had a doctor who insisted I should have been off pred in a year or so I would probably have tried to find someone else to help me (although where I live right now I might have been stuck). Fortunately my doctor is great and respects that I'm tapering according to my symptoms (four years on and at 1.5 mg).
lbh Anhaga
Posted
Thank you - I will be asking to see a different GP next visit
irene_88946 lbh
Posted
During a flare the inflammatory factors go up. at least for me. last month my test was 4 xs the range.