Has anyone with lupus very tender swollen lymph nodes under arms.

Have Sjogrens diagnosed and maybe Lupus and am awaiting my next Depot Medrol injection in early Feb. Am on very low dose Prednisalone , can't take more as it upsets my stomach but as my steroids levels decrease as I get near to my next injection I get excruciating pain under my arms and swollen glands.

Once I have the bigger dose of steroid it usually settles ,but this time during this waiting time it is much worse and so sore at night trying to sleep. I also have a thickening below my armpit which is extremely painful and have been sent to the breast clinic for mammogram etc.I had bother years ago with breast lumps and cysts but that was way before menopause, I am 61now. This thickening is new and the tender lymph nodes so much worse I just wondered if anyone out there has experienced something similar with lupus or similar autoimmune disease. I am also having drenching night sweats that also go away when the steroid dose is increased.

Am just a bit concerned something else is going on that the steroid is masking when I up the dose with those injections.

The pain is under both arms but one is worse, and also a little pain in the nodes in the groin.

My gp is not sure, going for blood tests this week.

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  • Hi. Not sure if this will help. When I was in the height of a flare - that lead to my diagnosis in November 2013 I had many symptoms including swollen lymph nodes in my neck, head and shoulder area and also under my left arm. The one under my arm was painful and I also got shooting pains down my arm. This cleared up quite quickly when I started my medication - hydroxychloroquine. Although I still get swollen glands in my neck and head on and off. I wish you well. Wendy

  • Thanks Wendy, interesting that you experienced something similar. They tried me on hydroxychloroquine but I had bad side effects and had to stop.

    I do also get the pain from the arm radiating right down to my hand as well.

    Funnily enough, all my other symptoms are raging at the moment too so it is maybe just cooking up to a bad flare.

    All the best. C x

  • Any pain radiating down arm needs be checked for heart related issue,dont wish scare you but do get it checked asap..i get pain lymph nodes under arms in flare..sweating at night also in flare..have lupus...mecaprine does same as plaqenil have they tried that?

    With plaqenil did you take one twice daily after food not within 4 hours indigestion remedies. I didn't at first and had bad side effects since a Dr found out few dosage time issue no more side effects..

    Often for instance I started on 1 pill for 4 months then rheumatologist added 2 pill fir evening.

    Rather than start at fill dose. ,did rheumatologist do that...body gets used to it easier that way.wish you well hope you feel brighter soon.

  • Very reassuring to know you had underarm pain with Lupus flares.I certainly feel it is all a big flare just now. Am really sensitive to the cold and also sunlight, that is what sparked it off this time.

    I will ask the Rheumatologist about trying the Mecaprine instead. Problem is it is all quite complex and the difficulty with the Plaquenil was a liver issue rather than my stomach. They suspect I also have Primary Biliary Cirrhosis which means a lot of meds cause liver issues with me.

    Thanks for your help, much appreciated. C x

  • Hi,

    I get what your suffering.

    Swollen, painful lymph nodes are frequent, neck, chest up into armpit, groin, arms... all over really. Severe night sweats , have a thickening in right armpit but not lymph as checked. I have many more symptoms too.

    I am diagnosed CFS/ME/FM , atrophied thyroid, micro pituitary adenoma. I'm going to a Lupus specialist soonish to get checked. ME. Specialist said 'yes m but also many other symptoms over & above'.

    Sorry, can't offer you defined info.

    I've had well over three years of tests, scans, bloods etc.

    Wishing you well xx

  • Thanks for your comments, you sound very like me in so many ways. Originally they thought fibro with me too but I also had pancreatitis, biliary inflammation , dry mouth, eyes and positive eye test,so they think Sjogrens but now they are wondering lupus as am very very light sensitive.

    Problem was I always had negative bloods part from a slightly raised ESR. T he Rheumatologist said 30 percent of people can have negative bloods with Sjogrens and it is closely linked to Lupus.

    I think things will settle after I get my next Depot medrol injection in Feb, he is giving me 120mg this time , more than last.

    The flares just now are dire, slightest thing brings them on, worst thing apart from the pain is the drastic muscle weakness in hands , arms and legs,I can hardly walk at all first thing in the morning till a couple of hours after I get my first Prednisalone tablet.

    It is so hard all those years of tests and hospital visits most of us go through with no answers.I had many years of that and had to give up work ten years ago due to the fatigue but at least now I have a good Rheumatologist who is trying to help and give a diagnosis and some treatment despite the negative bloods.

    All the best,hope you get some answers too. C x

  • Hi Cuttysark, yes I used to get these swollen nodes too from time to time. Some are the size of Maltesers, others get as large as half a ping pong ball. My GP said they tend not to do anything about them unless they get really nasty. Then guess what..... I get one that grows to 9cm across. The pain was immense. Felt electrical. I went to A&E, but waited so long that by the time I was seen, and driven across to another hospital, the surgeons had gone home, so I was told to come back in the morning.

    It burst in my sleep, and it was the awful used-nappy smell of the infected brown gunk that spilled out that woke me up. I needed to be put under to have it lanced, drained and cleaned out. Then had a community nurse come out every day for a week to pack out the wound full of sterile dressing so it would heal from the inside to out as it were, and then bandage it all up again.

  • What an ordeal to go through! Just typical you were too late to get treated when you got to the hospital!

    In a way maybe it was better it burst or you might have got blood poisoning with all that infection going on inside of you but they should have kept you in hospital that night .

    Glad it finally healed and hope it didn't come back.

    It does seem to be quite a common thing with all those connective tissue diseases, but will be glad to have it checked out soon. C x

  • I have something similar. I have cysts that rarely go away in my armpits. They get 'infected' and become VERYY sore/tender. Its called hydradenitis...or so they say. This just started in my mid 30s. I also was put on steroids and it bloats and upsets my tummy to where I am miserable. A low dose of doxicycline has helped the cysts.

  • Really useful information Gemini. I think some kind of low dose antibiotic might be the way to go.I see GP next week so will discuss it with her. It does seem as if I have something going on. One consultant thought it was a type of sepsis ,which is actually blood poisoning ,but nothing was showing in the blood tests. And although I feel yuch I would be critically ill if it were that.

    Interesting though quite a few Lupus folk had the same at a flare which I have just now.

    Thanks so much for replying. C x

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