I am a bit confused about pain and PsA. My blood work shows that I am not flaring,but I am still feeling joint pain. Is this common?
I have never had my blood work show anything other than a high A.N.A. and I have joint pain 24/7/365
My blood work is always good, other than a slight anemia. How can a flare be based on bloodwork? It's an increase in symptoms, and inflammation. Not everybody has the markers for inflammation in their blood. Have you taken a look at the book recommended in the book review section? It goes over a lot of these.
When you have a flare you may or may not even have visible inflammation, depending on the joints affected, and whether it is tendons, joints, etc. But there are many people who have had major damage occur with no markers.
Are you being adequately managed?
I take MTX and it seems to be working on my skin And I do feel better than I did 6 months ago, but I still have joint pain. I am confused because my rumetologist said that if my blood work showed no active inflammation,I should not be in pain. I will read the recommended book. Thank you for responding.
MTX typically helps you feel better, but hasn't shown to reduce pain or prevent bone damage. It's not a true diseases modification drug (you need biologic for that). If you want to reduce pain, you try a NSAIDs.
Pain from permanent damage is permanent. Nothing can be done. Hopefully you were c caught early enough to prevent or limit that problem.
While blood work may be normal for 50% of PsA patients, it is an accurate monitor for many many more of what is going on with medications. This is dependent on how many tests have been run and how consistent the variance is. Not labratory norms. Joint pain is not always related to systemic inflammation.
But for diagnosing the disease, it doesn’t tell the story. As you say, joint pain from damage isn’t related to inflammation.
tntlamb said:
While blood work may be normal for 50% of PsA patients, it is an accurate monitor for many many more of what is going on with medications. This is dependent on how many tests have been run and how consistent the variance is. Not labratory norms. Joint pain is not always related to systemic inflammation.
These are very sensitive proteins and are very much tied to tnf's once treatment commences. Laboratory norms for acute disease have no relationship. A change (or lack of) over time of a very few points is very significant once drug therapy is started.
They aren't significant during diagnoses true enough, but they are AFTER diagnoses. it isn't the wild west out there. I don't want anyone to make the mistake of thinking blood work is irrelevant or their docs are "quacks" when referring to it. It is a part of any picture not the whole picture.
Its also worth a little comment on the reporting limit for the markers - remember that for many of us our docs call ESR over 15 raised. My lab only reports it if it is over 5 (used to be 12!). The median ESR in healthy people is only 1.8. And everyone has their own “base level”.
So I could be a low “base level” ESR gal, who when healthy has an ESR of 0.5 - then my ESR needs to be greater than ten times my “normal” ESR to even get reported, and my doc won’t think much of it.
It’s the same for CRP, which has an even lower median of 0.8, and still only reports (at my lab) above 5.
Add to that, your base ESR increases as you age, and there’s a definite chance that the younger you are, the lower the base level ESR, and the less raised as well.
Good point Jenn. My Norm ESR is .8, last round of bloodwork it was at 2.1, my MTX was doubled. about a year previous the same thing happened and my enbrel was changed to to q5 days. If it is still elevated at this time next month I'll be changing biologics. I'm lucky in that ESR tracks well and CRP doesn't.(cheaper) The study by Mitishkas group at Mayo several years ago found a 95% correlation for one or the other and recommended choosing one as the benchmark and the other as consultive.
I'm surprised at the reporting in OZ as much of the work in that area was done by EULAR. Heres a nifty study even though its for Sponylitis that even pulls in the NSAIDS.
http://rheumatology.oxfordjournals.org/content/49/7/1317.full.pdf+html
Blood work is a poor excuse avoid the use of other assessment tools. It’s one of the primary reasons for miss diagnosis.
Thanks to all of you for responding. My doc also said that if I was still in pain, it could be osteoarthritis. I’m beginning to think that he is not very familiar with PsA.
Why don't you ask him whats going on both in regards to your blood work and course of treatment. No doc is going to give you more information than you request. No one on this board has a clue what he has assessed or hasn't what your physical exam and palpitation has shown (or hasn't) Nail scores ACR score, VAS score, etc etc. or how they have changed (or not) Its really far more objective than one thinks. I don't know my score for that matter.
Flaring has no relationship to disease control. I would be asking not if your pain is the result of a flare but if he has done everything to get it under control he can......... Then as it appears you are doing, explore where the pain is coming from. When he quits looking for answers then worry. I know we like to think we have a rare disease and we do. But the fact is to a rheumatologist it isn't rare at all. In fact it is likely 30% or more of his practice is seronegative arthritis. treating any arthritis is art and lots of luck. There are literally thousands of possible combinations. The great docs have a sixth sense, the rest follow protocol.
Yes osteo is very much a possibility as a source of pain. Thats the most common way for inflammatory damage to appear.
Without meaning to hijack, yep, I’m surprised at the reporting in oz too - such great researchers but universal health tends to blunt the care to “just good enough to stop you dying”. We have only two main labs where I live - I changed once I realised the other one used lower reporting limits.
It's common for me. I had my rheumy tell me a few times that my blood work didn't indicate any issues but I had a lot of pain. I'm not sure why but in most cases he will listen to me and not the blood work alone. I think for me anyway, it was issues with my tendons ( inflammation ) that would not show up on my blood work.
As Stoney mentions some inflammation is not visible. I find most is not, esp when it comes to tendons. There should be a number of symptoms the doc will consider.
Some rheumy's really don't know but they act like they do. I always tell myself, I know more about the disease than they do.
I suspect it’s because your doc knows that inflammation markers don’t tell the whole story! Be glad, he sounds like a keeper.
There’s a new discussion about Inflammatory Markers that you might be interested in.
Dini said:
I had my rheumy tell me a few times that my blood work didn’t indicate any issues but I had a lot of pain. I’m not sure why but in most cases he will listen to me and not the blood work alone.
Enthesitis doesn’t necessarily impact blood work. An MRI is typically needed. That’s one of the primary reasons for people with spondy get miss diagnosed.
So, I am new to this whole thing. I was only diagnosed in March (but hind sight is 2020) My blood work has some markers double and some normal. The way I clearly communicate what is happening to me between my doctor visits is with pictures. Smart phones! yeah! My flares are very visible. My joints often turn bright red and hot before they swell. My doctor even said that she advises people to do this.
Great strategy, tj4evr! The doctors to whom I’ve shown pictures like it as well.