Hello. I'm wondering if anyone here has had comparative cytokine panel blood tests done, and if so what proteins were found to be elevated in your system? My husband had these tests, and we should have some results by the end of the year. Just interested in comparing notes.

Hi Josephine, Can you be more specific on what is included in the test-panel? Hiltjo

Here is my understanding of the panel as explained to me by our doctors (my apologies if I get a few things wrong, as I'm definitely not a medical professional). A Cytokine Blood Panel test is a simple blood test taken to measure elevated levels of specific Cytokines (Cytokines are proteins in the blood that modulate the inflammatory response). Apparently...there are many different types of cytokines in the body. Our doctor took a series of blood tests from my husband both when he was having episodes, and when he was not having episodes. The results of the tests are then compared to help determine which cytokines are unusually elevated in his system. My husband apparently has several that are elevated, but we haven't had confirmation yet which ones. In my free time, I'm reading up on Cytokines and their effect on the immune system responses. I find the concept of a Cytokine storm a bit difficult to grasp, but over time it is sinking in. :)

Hi Josephite, Indeed the discussion about cytokines, understanding their role, function, targets and origin, and in which way they react on each other is of highly academic level. Like you I'm learning à lot of new insights again and again. It is à fascinating microworld. The finding that VEGF and angiopoeitine2 were recognised lately to be involved in SCLS is part of it, and might explain more complaints and issues which we are discussing, than we're aware of now. Indeed your question and your story some cytokines to be proven elevated can be relevant. Most immunologists will use & trust their hospital laboratory more than ready made panels, and most of us might not know what is being searched for and what not. So what panel of tests (description and/or brand) do you have? Hiltjo

Hi Hiltjo. Goodness, I don't really know how to answer your question, lol. I'm not really exactly what the panel tested specifically, and also wasn't aware there was branding on blood tests. Here in the Canadian health system, we often don't see a lot of these types of details as our government health care takes care of much for us (although the info is available to us, but sometimes you need to know what questions to ask). I just know that the tests were performed in a research lab at our university related hospital. We are lucky that our internal medicine doctor also works for the university and does research. But, we will be seeing him in Dec or Jan, so I will be able to get more details then. I'm trying to cram as much information as my brain will hold so I can be prepared with questions.

Hi Josephite, I thought you had à test panel at home, which i thought was quite remarkeble. To answer your first questiion. In the disorder resources you can find an article from Xie and others. Dated 2012. It is about VEGF and angiopoetin2.. So the answer is yes, But maybe someone on this forum has additional information, as well as your doctor could have? Sorry if I made it too confusing. Hiltjo

The article Hiltjo is talking about is the one co-authored by Dr. Druey and listed last, and summarized, in the Disorder Resources section of this website. (It's the one that found that, at least in laboratory experiments, IVIG shelters endothelial cells from the ill effects of our SCLS-episode blood.) If you want it, Liesa, write to me and I'll send it to you, but it's difficult for those of us who are not experts to understand.

Thanks very much for the info. Arturo, I have read the article you are referring to. I did find it very interesting, although as you mention, it is very difficult to understand. I don't expect to become an expert on this in my lifetime, but I do intend to learn as much as I can. A large part of my brain is hard-wired to stubborness, so I can't really let it go. :)

Hi Liesa, Arturo thanks for your remarks,, and sending the article to Liesa. Sorry if I made it too difficult at first attempt. But I'm willing to explain more whenever you need help, as can Arturo. I think it is wise to resumé some things. For anybody.. Cytokines are messengers in our body. They are molecules, very specialised proteins, surfing around. Cells communicate by producing all kind of different messengers and sending them in the fluid between cells. Other cells recognise those molecules (cytokines), and bind to them, which brings up some kind of action or reaction. Those reactions are very different and complex, and also depending on the kind of target- tissue (tissue is built up from à lot of different cells) Also one specific cytokine can cause several different reactions in à cell. The way our body reacts in all kind of sicknesses, infections from bacteria, viral hazards like flu, but also allergy, or e.g. hypoxia, is built on those complex reactions. You can imagine à lot af cytokines are known, but the list is expanding all the time as sciencific knowledge is improving. They have quite different names, such as interleukines, TNFalfa, interferon, but also Epo and VEGF are among them. IVIG contains à lot of molecules, messengers and other stuff which can react on messengers, several of them can be activated, or deactivated. So IVIG is stabilising processes, which we don,t know exactly at this moment, but it works. It is supposed that we produce periodically too much of several specific messengers, and that will bring up SCLS. Specific triggers could be able to start the process. This year they found evidence that Vegf and angiopoetine2 probably play à role as messengers in SCLS. It is à start. But still à lot is unclear. Hiltjo

This is mind blowingly complex area. I was a research biochemist for many years so can understand the work of Druey which is relatively easy and clear. The problem is that you will get all sort of changes in cytokines in all sorts of disorders as they operate as a cascade system. Sorting out cause and effect is a real challenge. My main thoughts would be on the anitbody band that seems so common in our disorder. Could this be interacting in one of the cytokine molecules somwhere and thus causes in incorrect downstream response which leads to capillaries leaking. Easy said but actually getting a handle on this will be difficult but as Druey has an in vitro assay there is some hope. I think basal level of cytokines will also be far less informative than looking at cytokine levels during a leak phase.

krogers - I agree. In my humble opinion - what you said about the cytokine molecules and the resulting "incorrect downstream response...". I'm wondering also, is this any different than what happens in SIRS (systemic inflammatory response syndrome)? This is all very complicated, indeed! Carole T.

it sounds logical to make the pre-assumption that in the antibody band ( MGUS) the cytokines are hidden which are responsible for the SCLS. So it has been tried to find out, but until know it is not proven that the band (elevated gammaglobuline/Mgus) contains such an active factor. It could also be à reactive fenomenon to something else. And MGUS is found in the overwhelming majority, but not all, to make it even more difficult. But indeed it strongly suggests that it must have something to do with the disease on headlines. Xie, Drueij and others proved in individual case elevation during an attack, which now can be checked more often, during attacks from other patients. However nobody wants to be the next victim, everybody should press on checking these (vegf and angiopoetin2) during attacks to gain more and broader evidence, as à first step. Hiltjo