Inflammation

So I’m told by my doctor that my blood work doesn’t show any inflammation. I have as as well as em and at the hight of a flare he did blood work. How is this possible. I feel it in my back, it’s seen on an mri. And quite obvious on my feet. Why would it not show in my blood work?

Natalia, I am a Ben's Friends community moderator and I don't have EM but I do have an autoimmune inflammatory arthropathy .... my blood work never shows any inflammatory markers (and this is the case for around 50% of the sufferers of my condition) but yet on physical examination and imaging it's a whole different story. Bodies are strange things. I hope your doctor exercises his clinical judgement based on what his eyes see not just what a set of bloods show.

Because it's not inflammation. It may look like inflammation and feel like inflammation, but it's not inflammation in a clinical sense. Inflammation is an immune response. The heat and redness of Erythromelalgia is not caused by immune cells. It's neurological in origin. That's why you don't have elevated markers of inflammation. I had blood work repeatedly when my knees looked like they were absolutely on fire. My inflammatory markers were always rock bottom. That's because the tests for "inflammation" look for specific changes that are governed by an immune response. Erythromelalgia is not immune mediated.

That's also why anti-inflammatories are ineffective against Erythromelalgia. It's not inflammation.

Thank you for clarifying that. My rhumatologist is being cautious about treatment for the arthritis because of the mixed messages of tests and the risks involved with tnf blockers especially when they’re not sure exactly what’s going on with other connective tissue

I'm assuming that your blood tests have also been rheumatoid factor negative? Have you had any treatments for arthritis? NSAID's are often the first line treatment, sometimes steroids (response to steroids often helps confirm it is an inflammatory arthropathy) or DMARDS's (disease modifying anti-rheumatic drugs) such as methotrexate, sulfasalazine and leflunomide. These are all usually tried first before the biologic medications/tnfs blockers/anti-tnf's. I've been on a biologic two years now and it is the only treatment that has shown any efficacy and no side-effects at all for me ... yes, some of the potential side-effects are a concern (but so are the side-effects of tylenol/paracetamol) but I'm more scared of the certain damage my arthropathy can and will do. If any of these treatments are suggested for you and you want a patients perspective you can view all the information and discussions on the Psoriatic Arthritis community without being a member.

We digress from EM but if it is secondary to an underlying condition control of the u/c may help give you relief from the EM too.

If you have any arthropathy questions feel free to send me a message as I may be able to point you to resources or other people who can help with support or information.

Yea, if you have both an auto-immune arthritis and EM, it could be tough to differentiate symptoms. It's good your inflammatory markers are low though. I just know my doctor had me on diclofenac, prednisone, and methotrexate initially (because they mistakenly thought I had arthritis) and they did nothing for the EM. In fact, I did better once I stopped all of them. I was at my absolute worst last February when I was taking all three. My EM seems like it's a stand alone condition.

Hi carterdk - sorry to butt in on this conversation - like you, my EM seems to be a stand-alone condition. I've been reading with great interest the discussions between you and bootcamper and others who are trying to figure out how to make workouts more tolerable. Can you tell me if Mexiletine has affected your heart or endurance during exercise? I have been dealing with EM for 2 years now and have not taken any prescription medication for it yet. Your success with Mexiletine has finally got me to at least consider doing something other than cooling/elevation as needed. I have been very hesitant to get on prescription drugs which might bring upon undesirable side effects. Except for EM, I am very healthy. Also, thank you for summarizing the new drugs which are being studied by the various pharmaceutical companies. Have you heard how many years it might be before we learn of their efficacy?

CarterDK said:

Yea, if you have both an auto-immune arthritis and EM, it could be tough to differentiate symptoms. It's good your inflammatory markers are low though. I just know my doctor had me on diclofenac, prednisone, and methotrexate initially (because they mistakenly thought I had arthritis) and they did nothing for the EM. In fact, I did better once I stopped all of them. I was at my absolute worst last February when I was taking all three. My EM seems like it's a stand alone condition.

nwgirl would you please repost your questions for CarterDK on his Mexiletine thread so this discussion stays about inflammation/arthropathies that Natalia asked about and your great question about working out on Mexilitine doesn't get lost either. Many thanks, Jules

I’ve tried naproxin,ibuprofen, both oral and topical Voltaren and now am trying meloxicam before moving on to other types of meds. But I’m not noticing much difference and am having a Rediculous amount of bruising. My doctors are worried about trying steroids as I have severe anxiety and have been having a hard time with depression and the dose of steroid needed for treatment could make these issues worse. I believe my rhumatoid factor was negative last time they checked. Just had an appointment with the dermatologist last week and he ordered the biggest blood work up I’ve ever had. Hoping to have some answers from this. He’s convinced that there are a few overlapping going on here but is struggling with diagnosis because although I have many physical symptoms that are obvious to the eye, my blood work always seems to show nothing they can pin down. Super frustrating!


Jules G said:

I’m assuming that your blood tests have also been rheumatoid factor negative? Have you had any treatments for arthritis? NSAID’s are often the first line treatment, sometimes steroids (response to steroids often helps confirm it is an inflammatory arthropathy) or DMARDS’s (disease modifying anti-rheumatic drugs) such as methotrexate, sulfasalazine and leflunomide. These are all usually tried first before the biologic medications/tnfs blockers/anti-tnf’s. I’ve been on a biologic two years now and it is the only treatment that has shown any efficacy and no side-effects at all for me … yes, some of the potential side-effects are a concern (but so are the side-effects of tylenol/paracetamol) but I’m more scared of the certain damage my arthropathy can and will do. If any of these treatments are suggested for you and you want a patients perspective you can view all the information and discussions on the Psoriatic Arthritis community without being a member.

We digress from EM but if it is secondary to an underlying condition control of the u/c may help give you relief from the EM too.

If you have any arthropathy questions feel free to send me a message as I may be able to point you to resources or other people who can help with support or information.