High LDH and Behcet's?

[behcetshurtsbeyondwords]

I am wondering if anyone else has been told they have high LDH levels?

I was at the clinic yesterday having my Remicade infusion and my nurse told me that my LDH level had risen again and that my rheumatologist has sent in a request for me to have an abdominal CT scan. This blood test (called lactate dehydrogenase or "LDH") is a sign of tissue damage and inflammation in the body, but doesn't specifically tell the doctor where it is occurring or why. The most serious thing high HDL is associated with is Lymphoma. I had this scare already last summer when my LDH had doubled within two weeks, so there was fear about Lyphoma because of the immunosuppressants and Remicade treatments I am on. I had an abdominal CT at that time as well, because I guess the type of Lymphoma that is associated with these therapies begins growing in the abdominal lymph nodes. Because I already went through this last summer, and also because my LDH level has been higher than normal for a long time now, even long before I began any Behcet's treatments, I'm not too worried about Lymphoma this time around. But I do often wonder exactly why this level is so high in me and why it often will double so quickly. Maybe it is a common finding with active Behcet's? This is the only "inflammatory marker" that has been found in me as I have tested negative for the c-reactive protein and for any antibodies, and also have normal ESR sed rate, etc.

[lesleyg]

Hi Jenna

Mine has definitely been high. As you said it is a sign of tissue damage without being specific. I was told not to worry too much - let's face it one thing we know is that we have tissue damage. If you find anything out let us know, however I wouldn't stress too much.

Cheers Lesley

[behcetshurtsbeyondwords]

Thanks Lesley,

It definitely does help me feel a bit better that I'm not the only one with it being too high. It really does make sense that it is just due to the fact that we have constant tissue inflammation and damage occurring. My doctors just try to scare me with the whole Lymphoma thing, but I guess it is good that at least its being monitored closely and looked into when it gets too high suddenly. I have been correlating high levels to bad flares of swelling and pain, so I'm sure that's all it is. If I do learn more about it, I will definitely let you know

[xandii]

Hi Hun,

This sounds just likeexactly the type of question to bounce off of the BSS medical panel !

We could all benefit from knowing something about this one and these guys have formed this group specifically to inform us about things like this.

Would you be a real sweetie and ask them on all our behalf ? Maybe get them to write the answers on here so we can all take notes ?

Hope you feel a bit better soon hun and get better news and thanks for raising a very interesting item we should all think carefully about. mwah !!

tootles xx

[behcetshurtsbeyondwords in reply to xandii]

Hi Xandii,

thanks for your reply. I will look into how I go about asking this question to the medical panel. None of my specialists really know too much about this test or what the results really mean. All they talk about is that its a sign of Lymphoma, and that I'm at high risk for it because of the meds. I try to explain to them that could it be that the elevated LDH is just a sign of disease activity? But they try to talk me out of that theory-- so maybe the medical panel will have better input, especially since they probably know more about Behcet's than I or my doctors do.

Hopefully we will have some answers soon. Take care

[devonshiredumpling in reply to behcetshurtsbeyondwords]

I know exactly how scary this is! My LDH levels are raised too - plus I suffer exceptionally severe sweats - another lymphoma sign. About 2 years ago now my doctor had me tested for lymphoma because of these problems - he told me that is what he was testing for too. Now a little knowledge and access to the internet are dangerous things! Especially when, in the midst of all this angst, a jewellery-making friend died. Of lymphoma!

It will make you feel a little better, I hope, to learn that I didn't/don't have lymphoma. Nope, I have Behcets, which causes inflammation in my body.

[behcetshurtsbeyondwords in reply to devonshiredumpling]

Thanks yes it does help settle some of my fears to hear that you have been through this as well. It becomes so scary because of the high risks that many of our meds carry. Also for me, I suffer from a very tender swollen belly and often I will get areas where its so swollen that there's a palpable lump sticking out that is very painful. It almost makes me think that my liver is enlarged or something or that its part of my intestines sticking out. But with this Lymphoma thing hanging over my head, it brings some extra fear about my swollen abdomen and these lumps. The only thing that does help to bring down my anxiety is the fact that I went through this exact thing last summer and everything turned out ok, just like with you so I really shouldn't be worrying too much. I really suspect that the elevated LDH is just a marker for disease activity of Behcet's because I do know that when its become very high in a short period of time, I have been in a bad flare with severe exhaustion, fatigue, weakness, swelling, and pain. Now whenever I am feeling overwhelmingly exhausted for days at a time, I suspect that my LDH level has doubled or just increased a lot. But thanks again for sharing your positive story