IDreamInColor Posted January 9, 2012 Report Share Posted January 9, 2012 I seem to have inflammation all thru my body, my entire digestive tract, my sinuses, even my gums, as well as female parts. I can't help but wonder if its all related to the dysautonomia in some way. In August when I was hit hard with the dysautonomia is when all the inflammation started. The inflammation lasted for about 2 months, then subsided, but now it's all back.Does anyone have any insight or answers to this? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 9, 2012 Report Share Posted January 9, 2012 Sure. The patients with elevated angiotensin II levels have elevated markers for inflammation. A doctor recently also commented that some POTS patients also have signs of chronic innate immunity activation - this being a huge area of research in relation to CFS now as innate immune abnormalities were found in CFS and some immunosuppressant medicatons appear to help CFS according to the Norwey study.Also Sjorgens Syndrome can cause some of these problems and up to 50% of these patients experience some form of dysautonomia. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 9, 2012 Report Share Posted January 9, 2012 I was just dx'ed with chronic immune mediated inflammation and the immunologist thinks it could very well be the cause of all of my problems including POTS. The inflammatory protein that is elevated in my body, C4a, is known to cause vascular permiability, smooth muscle contraction, and histamine release from mast cells, in addition to causing inflammation. I am having a flare right now and my joints (all of them) are on fire. My skin also feels like it is bruised if it is touched. I do not test positive for any of the typical autoimmune tests but he said we will be treating me with one of the treatments used for an autoimmune inflammatory disease such as rheumatoid arthritis. He is weighing the options of which treatment to try first with some colleagues and we will be talking about it in about a week. If this is in fact the case, it explains my hypovolemia, my upper and lower GI issues, the weird rashes/hives, the joint pain, even the migraines. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 10, 2012 Report Share Posted January 10, 2012 I think my POTS also relates to an inflammatory process because its uually worse after a nasty ankylosing spondylitis flare up. Quote Link to comment Share on other sites More sharing options...
lillybits Posted January 23, 2012 Report Share Posted January 23, 2012 i get gross belly bloat...I am all skinny and some days look preggers it gets so bad Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 23, 2012 Report Share Posted January 23, 2012 What treatment are you going to do? I'm back on my plaquenil for my RA and hope it will help the pots as well. Mine is also immune mediated Quote Link to comment Share on other sites More sharing options...
blitzk Posted January 23, 2012 Report Share Posted January 23, 2012 This Summer my body literally felt on fire. Anyone else? It has since calmed down but an AZ summer coupled with the feeling of my entire body inflammed was less then desirable Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 23, 2012 Report Share Posted January 23, 2012 Many of the cytokines involved in inflammation have vasoactive consequences. I am always interested to see how various immuno suppressive drugs work on POTS. TNF Alpha blockade in particular. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 23, 2012 Report Share Posted January 23, 2012 Interesting, because I was told blood tests showed excess inflammation shortly before my MCAD symptoms hit (after years of POTS and no inflammation problem). I've also had some weird inflammation lately, like the insides of my cheeks and my feet some mornings. I have wondered if the inflammation is the chicken or the egg with the MCAD, but I don't have Rama's medical background so don't claim to understand any of this. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 23, 2012 Report Share Posted January 23, 2012 Dont worry I dont really understand it either LOL Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 23, 2012 Report Share Posted January 23, 2012 I def. think it is related... my mom has tons of inflammation and had ulcertive colitis and now Crohns. I too have problems like you...after my pregnancy all my joints swoll up and I had trigger finger in every joint.. they thought it was RA, but it was negative. LDN is supposed to be really great with reducing it... have you tried it? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 23, 2012 Report Share Posted January 23, 2012 Many of the cytokines involved in inflammation have vasoactive consequences. I am always interested to see how various immuno suppressive drugs work on POTS. TNF Alpha blockade in particular.I could not agree more! I'm supposed to be taking enbrel shortly down the road for my RA so I will definitely let you know when I do! I just need to get over my lymphoma fear first. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 23, 2012 Report Share Posted January 23, 2012 I think in a few years they're going to discover an entirely new autoimmune disorder that causes POTS.Until then, what are we supposed to do? Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 23, 2012 Report Share Posted January 23, 2012 I think the inflammatory/immune processes probably have lots to do with our symptoms. For example, I totally understand now why I kept thinking MCAD...my C4a is off the charts and C4a happens to be one of several inflammatory proteins that cause mast cell degranulation.julie - I'm not sure if it was me you were asking about which treatment I am going to use. On my f/u with the doc everything took another strange turn because (although when he first started seeing me, he did not believe that I ever had Lyme disease), he can now only find research showing that the only thing that has ever been found to cause the extreeeemely high C4a levels that I show is Chronic Lyme DIsease. So, now he thinks that that's what I have but he is doing more research on treatment. The Lyme theory changes the whole game because all of the docs that believe in Chronic Lyme also believe that the only sufficient treatment involves long term antibiotics and that any immunosuppressive drugs are extremely contra-indicated. I have another appt a week from tomorrow to see what he's come up with based on this new twist. (At least he's a believer now! ) Quote Link to comment Share on other sites More sharing options...
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