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swelling in right supraclavicular area
I am concerned about some swelling I have had in my right supraclavicular area for about 16 months now. The area is very painful and to the point of debilitaing at times. It causes me pain in the right side of my neck all the way around to the back of my scalp, my right shoulder joint, and down the right side of my chest wall. In August of 2011 I had swelling in the lymph nodes under my right arm to the point that I could not put my arm down comfortably. I was diagnosed in September 2011 with Lupus after blood work (positive ANA w/ speckled pattern) and my symptoms were all put together (body pain all over, swollen painful joints, swollen lymph nodes). I was put on three anitibotics that did not help, then placed on prednisone for three months and in December started taking Plaquenil. After the Plaquenil the swelling under my arm went down. However, the lump in my shoulder has not. It causes a burning sensation in the muscle on the back of my shoulder also. I do not have weight loss (just the opposite actually, I have gained a lot), not night sweats except when I was on Prednisone, but they stopped and were not "drenching" night sweats. No fever that I am aware of unless I am sick. The pain in this area and the egg size (and shaped) mass are what worry me. I am terrified of a diagnosis of cancer. I have lower back pain also, it seems to come from my spine out toward my hips and sometimes from my hips down my legs. I was told in a CT scan that I had some deterioration in this area also and I know the Lupus can affect my hip joints. I am just concerned. My Dr did a MRI earlier in 2012 that said I had a 1 cm reacitve lymph node in my shoulder. He then sent me for a CT scan that said the node was not visible at that time, but did say I had a "mildly" enlarged heart (I do have HBP and aorticinsufficiency not sure if that might be why), and deterioration in my lower spine area. I do not doubt the Lupus diagnosis because I have some pretty classic symptoms. I am just worried about a cancer diagnosiss and cant seem to get anyone to do a biopsy. They keep telling me my blood work looks fine, my scans did not show any masses, I have since had chest xrays that came back normal. Should I stop worrying, because it still is swollen and painful. Not growing that I can tell, same as it always was. Sometimes hard and painful, other times rubbery and painful. Always painful. Any input would be appreciated. Thanks.
I am going to read up on drugs (natural) that help with inflammation and see what works. I have tried CoQ10 and it does help some. FIsh oil makes me sick at my stomach, I tried it.I also found an article that states a diet rich in anti-inflammatory foods will help. I am also going to try that. I am willing to try anything that may help improve life. I am not able to find a lot of information online about how Lupus actually affects lymph nodes, only that it does.
COMMUNITY LEADER
Well, I don't know a lot about SLE. I'd assume that nodes swell during flares because they are filling up with new B-Cell lymphocytes, which are producing autoantibodies. Those autoantibodies then attack your own self.
I'd also assume that, whatever the trigger for a flareup is, there are inflammatory biochemicals that flow throughout the bloodstream. Those chemicals then provoke some nodes to swell, but not others for unknown reasons.
Btw, in a previous repy I'd used the phrase "systemic lymphadenopathy", but the correct term is really "generalized lymphadenopathy" (which can occur because of a systemic infection, but also from SLE).
Turmeric is a well-known general anti-inflammatory. But very little gets absorbed, that's why it sometimes gets combined with piperine. Quercetin inhibits the pro-inflammatory mast cells.
Usually, supplements don't do much for any condition. I would research others' experience before spending any money. But you never know...
I'd also assume that, whatever the trigger for a flareup is, there are inflammatory biochemicals that flow throughout the bloodstream. Those chemicals then provoke some nodes to swell, but not others for unknown reasons.
Btw, in a previous repy I'd used the phrase "systemic lymphadenopathy", but the correct term is really "generalized lymphadenopathy" (which can occur because of a systemic infection, but also from SLE).
Turmeric is a well-known general anti-inflammatory. But very little gets absorbed, that's why it sometimes gets combined with piperine. Quercetin inhibits the pro-inflammatory mast cells.
Usually, supplements don't do much for any condition. I would research others' experience before spending any money. But you never know...
Thank you I will give them a try. It can only help, or do nothing at all. I appreciate the tips and the information. I have read a lot of information on Lupus but the only thing I could find on lymph node involvement is that 50% of people with SLE will experience swollen lymph nodes. No indication of which ones, characteristics or anything of that nature. So I appreciate any insight.
COMMUNITY LEADER
Yes, correct except that the presence (not absence) of a fatty hilum is a very good sign. This overview is for sono (not MRI or CT) but the principles are the same:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324368/
When behind the knees (popliteal) etc pop up but go down then that sounds like systemic lymphadenopathy - not cancer. You have a very reactive system.
The two plant extracts that I mentioned are anti-inflammatory. They might be worth a try.
The pain comes from swelling inside the node. That pressure against the covering (capsule) causes pain. You just might have other swelling in the area that also causes pain, especially when the inflammatory chemical bradykinin is released.
Maybe the swollen node impinges on a nerve. Or maybe it is even referred pain.
Btw, turmeric is what makes mustard yellow.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324368/
When behind the knees (popliteal) etc pop up but go down then that sounds like systemic lymphadenopathy - not cancer. You have a very reactive system.
The two plant extracts that I mentioned are anti-inflammatory. They might be worth a try.
The pain comes from swelling inside the node. That pressure against the covering (capsule) causes pain. You just might have other swelling in the area that also causes pain, especially when the inflammatory chemical bradykinin is released.
Maybe the swollen node impinges on a nerve. Or maybe it is even referred pain.
Btw, turmeric is what makes mustard yellow.
I was trying to mention everything about the symptoms of both issues and missed a few. I was diagnosed at age 15 with aortic insufficiency. It was discovered by accident when they where trying to check for something else, I was 15 so I have no idea what they were looking for.
As for the symptoms I suffer from Lupus, I have joint pain and swelling, muscle aches, fatigue, a red rash across my cheeks and the bridge of my nose, my forehead is often broke out, I am losing hair (I think Plaquenil might be the culprit there), occasional swollen lymph nodes under my arms and behind my knees (usually in flares), I do have photosensitivity to the sun (I turn a nice shade of Lobster after just a few minutes), I recently had a bout of pleurisy (first time ever, hopefully last time). No one told me about the diet on Prednisone, wish they had because I packed on so much weight.
From your post I am taking that the reason they did not see concern for a biopsy was because these things you mentioned did NOT show up in the scan, correct?? I was not sure what they were looking for other than reactive lymph nodes or tumors, masses, etc. I also did not know that cancerous lymph nodes are not painful. This mass is extremely painful all the time. It hurts to lift anything with that arm, use a computer mouse, write for long periods of time, etc. It is very limiting. My Dr thinks the limited use of my dominant arm is being caused by my Lupus. It tends to affect my shoulders, elbows, and hands the most and of course my poor knees suffer.
Thanks for your reply I apprciate all of the information. You were a great help. Anything else you can think of that I need to know let me know please. Also you asked if I had tried termeric or quercetin??? What are these and were do I get them?? Are they good for inflammation or what??
As for the symptoms I suffer from Lupus, I have joint pain and swelling, muscle aches, fatigue, a red rash across my cheeks and the bridge of my nose, my forehead is often broke out, I am losing hair (I think Plaquenil might be the culprit there), occasional swollen lymph nodes under my arms and behind my knees (usually in flares), I do have photosensitivity to the sun (I turn a nice shade of Lobster after just a few minutes), I recently had a bout of pleurisy (first time ever, hopefully last time). No one told me about the diet on Prednisone, wish they had because I packed on so much weight.
From your post I am taking that the reason they did not see concern for a biopsy was because these things you mentioned did NOT show up in the scan, correct?? I was not sure what they were looking for other than reactive lymph nodes or tumors, masses, etc. I also did not know that cancerous lymph nodes are not painful. This mass is extremely painful all the time. It hurts to lift anything with that arm, use a computer mouse, write for long periods of time, etc. It is very limiting. My Dr thinks the limited use of my dominant arm is being caused by my Lupus. It tends to affect my shoulders, elbows, and hands the most and of course my poor knees suffer.
Thanks for your reply I apprciate all of the information. You were a great help. Anything else you can think of that I need to know let me know please. Also you asked if I had tried termeric or quercetin??? What are these and were do I get them?? Are they good for inflammation or what??
COMMUNITY LEADER
Hi, there are about a hundred things that can be said in response to your very well-composed post.
At this point in your illness, you might have become very aware that with some conditions, it can be very, very advantageous to become your own doctor. One example: when put on pred, did anyone tell you to restrict types of things that you eat and drink to avoid rapid weight gain? (That would center on low-glycemic and low sodium, because of the glucocorticoid and mineralocorticoid effects.)
Your diagnosis of SLE isn't what I'd guess to be a firm diagnosis, it could be more of a catchall category. E.g., you don't mention the typical skin/rash symptoms or the photosensitivity. You might have some other autoimmune condition, not that it matters a great deal because the treatment goal is to suppress an overactive immune system.
Have you read that SLE and other related conditions can cause your aortic insufficiency? IOW, your immune system very possibly damaged the valve. I'd guess that autoimmunity is the probable source of all your problems.
Have you tried turmeric and/or quercetin, e.g.?
As to cancer: Sometimes scans can rule out cancer if they see certain things such as the presence of a fatty hilum. They likely also failed to see any necrosis in the node, which is one of the rare ways that cancer will cause pain in a node. Reactive nodes are often painful, cancerous nodes are most often not painful.
The scans probably also failed to see calcification, which would be a sign of a metastatic node.
There doesn't seem to be reason to do a biopsy. Besides, lymph nodes have useful functions to perform and they shouldn't just be cut out without necessity. I wouldn't ask for that.
At this point in your illness, you might have become very aware that with some conditions, it can be very, very advantageous to become your own doctor. One example: when put on pred, did anyone tell you to restrict types of things that you eat and drink to avoid rapid weight gain? (That would center on low-glycemic and low sodium, because of the glucocorticoid and mineralocorticoid effects.)
Your diagnosis of SLE isn't what I'd guess to be a firm diagnosis, it could be more of a catchall category. E.g., you don't mention the typical skin/rash symptoms or the photosensitivity. You might have some other autoimmune condition, not that it matters a great deal because the treatment goal is to suppress an overactive immune system.
Have you read that SLE and other related conditions can cause your aortic insufficiency? IOW, your immune system very possibly damaged the valve. I'd guess that autoimmunity is the probable source of all your problems.
Have you tried turmeric and/or quercetin, e.g.?
As to cancer: Sometimes scans can rule out cancer if they see certain things such as the presence of a fatty hilum. They likely also failed to see any necrosis in the node, which is one of the rare ways that cancer will cause pain in a node. Reactive nodes are often painful, cancerous nodes are most often not painful.
The scans probably also failed to see calcification, which would be a sign of a metastatic node.
There doesn't seem to be reason to do a biopsy. Besides, lymph nodes have useful functions to perform and they shouldn't just be cut out without necessity. I wouldn't ask for that.
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