ELEVATED LEVELS...NOW WHAT

[Winniesue]

When you have elevated inflammation levels, what do doctors usually do from there to determine what exactly is causing inflammation? are their tests that show WHERE the inflammation is coming from? I have ESR/SED rate of 69, CRP of 16, LDH of 20 and Alpha 1 and Alpha 2 globulin elevation. Ok, now what? Lupus was officially ruled out due to a negative ANA - but my doctor isn't overly concerned and one of them (the rheumy) says it could just be arthritis. ?? don't we want to try and find out where/what ? I've felt horrible for the last 6 months.

[happytulip]

You can have lupus with a negative ANA. 5 -10% of people with Lupus have ANA negative Lupus. It’s rare but it happens. I am one of them. Sadly, not all Rheumatologists will accept this but the more open minded ones who are pushing research do recognise and diagnose ANA negative Lupus. You can also have a positive ANA and not have Lupus. (I have written this so many times on this forum that I feel that I should have it on my headstone)! Lol! I get so fed up of doctors relying on an ANA to diagnose Lupus when it’s not the ultimate deciding factor.

You do have a high ESR. But forget bloods, what are your symptoms?Doctors should start by investigators a patients symptoms not just blood result?

[Hidden]

Could just as easily be Rheumatoid Arthritis or Sjögren’s or Psoriatic Arthritis as Lupus - especially as your ANA is negative. Symptoms are interchangeable for many and these diseases can all cause high ESR and CRP - although RA is more likely to raise your CRP than the others.

Try to get referral to rheumatologist as soon as you can as we aren’t medically qualified. But my advice would be to keep an open mind about what is causing your inflammation markers to be elevated. These markers are very non specific and most diagnosis will depend on your symptoms. All rheumatic diseases can cause systemic unwellness, pain and swelling, fever and rashes.

[Fezzywig]

First of all, no need to panic. Sed rates can vary wildly and often times don’t necessarily mean much of anything specific. Although your numbers are elevated, they are not terribly high. I have had rates well into the hundreds, even as high as 4 or 500 in the past. It’s certainly no picnic but not a death sentence either. Also, keep in mind that these numbers can literally change from day to day. In the past when my numbers were escalated to what I considered an alarming high, my doctor

[Fezzywig]

Woops, didn’t mean for that to happen.. anyways, the gist of what I was trying to say was that my doctor checked me over pretty thoroughly that visit looking for anything new going on or anything flaring up out of the ordinary. Other than the obvious we just agreed to wait a couple of weeks and check the numbers again then. As it turned out, my next tests came back with sed. rates all within the normal ranges. Ever since that experience I have religiously monitored my sed. rates and with only a couple of times have I strayed off course so dramatically thank goodness. Try not to overreact if you can. If your numbers continue to rise above the normal ranges following your next round of blood work you will need to start hunting down what might be causing your troubles. Keep an open mind as the causes of inflammation can be daunting. It’s possible that you will never get good answers. People have written entire books, large books, on the subject and it still remains illusive for so many people. Hopefully, that will not affect you and working closely with your doctor you should get some encouraging answers. Hang in there girl. You are smart and resourceful, that’s a winning combination when it comes to figuring out our immune systems and the countless autoimmune diseases that are inevitably waiting for you down the road unless someone figures out the cure pretty damn soon. I’m sure ready, how about you??

Best wishes, and have a safe and feel-good weekend.

[chrisj]

Where do you all get these results from? When I see my rheumatologist I'm asked "how are you" and given paperwork for the usual blood tests. Urine test and bp done before I see the doctor, then I'm on my way home...

I had slightly raised inflammation showing after my gp did a blood test earlier this year with the advice thats its nothing very much and doesnt need any treatment. Thats all the information I'm ever given when I have appointments. Having looked at all the letters and numbers often posted in HU I've no idea what it all means

My ANA was positive in 2005 and thats the last I heard of it after 13 years of visits to rheumatology.....

[Treetop33]

Just leaping on this thread a little (though it might help you as the OP too) do you have to have an elevated ESR rate to have an autoimmune disease? Or can you have no inflammation and still have one?

[Hidden in reply to Treetop33]

I think I’m right in saying that all rheumatic diseases have an inflammatory component - particularly noticeable during periods active disease. But this isn’t to say that high inflammation always shows up in blood for everyone - although it certainly does with me.

I’m told with Sjögren’s the blood is uniquely viscose (due to lack of moisture or high concentration of proteins?) and so ESR or PV aren’t useful indicators of active disease as they are with RA and Lupus. CRP is often not raised with Lupus or Sjögren’s (something liver related I think) but is often raised with RA - and is the most reliable marker of inflammatory arthritis various rheumatologists have told me. So if you have RA you will usually watch out for your ESR and CRP to see if they match your pain - similarly for those with Lupus and ESR/ PV. But those with Sjögren’s probably won’t be made aware of ESR/ PV as it isn’t seen as as useful.

[Treetop33 in reply to Hidden]

Thanks that makes sense. I'm asking because my rheumy (actually two now) has said that because my ESR was in the normal range (right at the top mind you) in 2015, I can't have had Lupus then (despite having other symptoms). It matters to me because either the Lupus has been coming on for 10-12 years, or it suddenly arrived in the last year, the former having more predictable consequences than the latter (my aunt died from hers after diagnosis, and very quickly, in her late 60s).

[Melba1 in reply to Treetop33]

Most autoimmune diseases will cause inflammation but some people will not show this in their blood and some people will have naturally very low ESRs that any rise doesn’t fall out of range but shows inflammation for them. So if your ESR is 1 when you’re well and goes to 8 in a flare, most medics won’t think you’ve got inflammation because 8 is normal for many people but 8x normal for that person whose mormsl is 1!! I think keeping all blood tests and finding out your own normal is important. Some people’s bodies (especially those that have been ill a long time or have an immunodeficiency as well as autoimmunity) won’t show inflammation in the usual way so your body can have be being attacked by your autoimmunity but no change in your acute phase reactants (ESR/ CRP). That’s why the best rheumy departments don’t rely on blood tests very much at all.

WinnieSue - you can have inflammatory markers increased for lots of reasons but they need investigating further especially if you feel rubbish still after 6 months! You can have a negative ANA for all sorts of reasons and still have lupus. The 5% quoted as ANA negative is likely to be much higher and recent research is catching up with this. What are your other symptoms? If you feel they point to lupus or another autoimmune disease, I’d push for another appointment with a rheumatologist?

Hope you feel better soon

X

[nanleighh]

In my case my ESR is always been Within normal range and I have lupus. My ANA is positive though and I have anti-RNP Antibodies. I was ill off and on for 10 to 15 years before diagnosis though having fatigue, joint pain, muscle weakness, rash on my face and neck. I had a bad bout in 2007, a complete work up, and everything came up negative except for a low vitamin D level. In 2014 I became very ill again having even more profound symptoms. I was then diagnosed with lupus. I am in the healthcare field and still didn’t think I was sick, but in hindsight all the symptoms I’ve had over the years now make sense. All mentioned above and including unexplained fevers and leukopenia. I wish you the best in your journey. I would say keep a journal of all your symptoms and take pictures of any swelling or rashes to take with you to your appointments. Warmest regards, Nan

[Winniesue]

Thanks to all. it is frustrating for sure. My ESR was found elevated after my I went to my GP with itchy hands (only, and both) that ended up swelling 2x their size the next day. I believe she was concerned about auto immune, as I have many family members with issues (mom had Lupus, daughter has Celiac and nephew has Crones) I've also had fevers from 99-101.9 so nothing significant, but elevated. My Rheumy thought maybe I had Fibro, but said fever is not normal w/Fibro. Wondering if a few things are going on at the same time. Since these tests, I have significantly slowed down my smoking, down to only 3 per day, and a lot of my chest discomfort/pain has decreased. I also had hilar adenopathy (swollen lymph nodes in the lungs) but that has gotten better. I think I may have a few things going on., and will re-test all of those elevated levels in a month and see where we are at. Thanks for all the well wishes as well, and right back at you all