Joints and stuff. #lupus

I’m having some new joint problems. My knees and my knuckles get swollen, red, hot, and itchy. It feels like a sun burn. It is always accompanied by pain, stiffness, and loss of range of motion/ability to bear weight in those joints. I actually had an episode like this the other day in my jaw. I’ve never had anything like that before. The pain in my hands has been pretty bad. It’s almost as if I lose control, too. Last week I had a few days where I couldn’t type. I’ve been having a hard time using utensils. I’ve had pain in my hands for quite some time, but this is new. There doesn’t seem to be a particular trigger for these episodes, although they seem worse in quick temperature changes or if I’ve been standing too long.

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Last time I saw my rheumatologist, he gave me a shot of kenalog to see if it would help with the joint pain. It did, to a point. It seemed like I went about a week without breaking out in the red rash around my joints. The pain was a little bit better. I can’t honestly say it was real solid “relief” though. He said that if it helped the pain that I probably have arthritis. I will probably be put on methotrexate again or perhaps a biologic. The fact that I’ve developed a hot rash that goes with it says to me that it’s rheumatic. I’m not a doctor but I’ve been known to connect a dot or two.

I posted my knee picture on a support group site and some members there thought I should go straight to the ER. The episodes go away on their own within 30-60 minutes so I haven’t seen a reason to run to the ER. I will, however, make my doctor aware of it. If they did not go away or lasted longer, I would consider the ER, but I won’t go unless I really feel like I need to.

In other news, my urinalysis showed that I’m definitely on too much hydrocortisone. I started tapering last week. I have to do it really slowly, and I’d like to go down at least 10mg, and more if I am able to. It will probably take me about 8 weeks to taper 10mg. If I try to taper in less time, I’ll feel like crap.

I’ve been taking a break from Duexis for the past 2 days (800mg ibuprofen) because my stomach needs a break. My joint pain is worse and so are my headaches, so I’m trying Aleve in the mean time. I know that could bother my stomach too. I don’t really know what to take for pain anymore. Everything either bothers my stomach or makes me have shortness of breath in the middle of the night that keeps me awake. My fevers come and go whether I take the Duexis or not. I feel like I have heartburn all the time. The weird thing is, the Duexis helps with esophagus inflammation that I get sometimes, but it makes me have stomach inflammation. I wish there was something that helped that didn’t cause so many problems.

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15 Comments

    • I have not noticed cuts , I have had times where my skin is dry and flaky on my wrists. I did also have some patches on my inner elbow bend and backs of my knees. It was probably eczema. It was very itchy and and it would burn sometimes. It’s cleared up a bit for now, but I did still get some irritation from pool chlorine recently. Have you tried any creams just to relieve the cuts?

  1. Hi there!

    Sorry to read about all the problems you’ve been having. I saw the picture of your knees…mine do this too – get red hot and swollen, lasting for around 30mins to an hour. I’ve had tests and have been to see specialists etc. but no-one seems to know what the cause is. I’d be interested to know what your doctor has said might be causing yours. Thanks!

    • Hello! My redness and swelling is caused by a form of rheumatoid arthritis called Still’s Disease. I was diagnosed by a rheumatologist. It causes red rashes, joint pain and swelling, and daily fevers. I went to a dermatologist as well and she felt it was my autoimmune diseases. If you’re not getting any answers from your rheumatologist, it’s always good to get a second opinion. A lot of the time diagnosing an autoimmune disease is a process of elimination, which makes it tricky to diagnose and seeing a few different rheumatologists can be helpful. Sometimes being diagnosed relies more on your symptoms than your test results, make sure you tell the doctor other things that might be going on with your body no matter how trivial they may seem. I hope you can find some answers soon, feel free to send me a comment any time!

  2. I’m not sure if. Anyone still goes on here– searched hot knees and got here. I have had episodes of hot to touch(warmth can be felt through pants) very red and it happens out of nowhere started in 07. Came and went ranodmly. Last year started getting it more frequently accompanied by blotchy legs. Was tested by a rheumatologist but negative for most diagnoses but they threw around the term paldromic rheumatism … My knees looks just like the above picture. What is your diagnoses?

    • Hi Kristen, I am still actively writing in my blog. My diagnosis is Adult Onset Still’s Disease, along with lupus. There isn’t really one definitive test for either one, sometimes diagnosing an autoimmune condition is more about your symptoms than what your blood work shows. Sometimes certain diseases have a list of criteria that help diagnose the condition. My knees get hot to the touch, and also my feet. I get red hot blotches pretty much anywhere. It took me a few rheumatologists to find the right one, so if you feel like you’re not being helped, definitely get a second and even a third opinion.

      • Thanks for the reply. I never heard of stills disease. I just researched just to see and I do not believe I have that as those symptoms are much different than mine. I really only have anemia and he hot burning knees–I just think it’s so very strange I get these knees flare ups and there is just no definite answer. Are your knee flare ups random? Or are you standing or doing activity? Does the redness stay within your front knee? I really appreciate your time and opinions. I will most certainly look at other options for rheumatologists! Take care

      • My knees were the first joint to bother me, long before I had a diagnosis. The strange thing about it is that for a long time, they were never red or hot or swollen, they just hurt, so the doctors didn’t know what it was either. The redness is a fairly new thing for me actually, within the past few years. So the onset of my autoimmune issues was gradual. It took time for me to start seeing more symptoms and put all the puzzle pieces together so they could fit me into a diagnosis.

        My knee flare ups are worse some weeks than others. Standing seems to set it off, but I have some days where standing doesn’t bother me at all, so yes I would say it’s random. My front knees usually stay red until I’ve been sitting down for a while, then it calms down, but doesn’t necessarily go away completely. It is also itchy sometimes. Pay attention to your symptoms, it helps to write stuff down, even the odd things that seem trivial, you never know when you might see a pattern. I also take pictures of my rashes, not just for my blog, but to show the doctor as well, because my knees aren’t always red when I have my appointments.

        I hope you can get some answers soon, let me know if you have any ore questions 🙂

      • Hi again, and thanks for sharing your experiences Jill.

        Just to give a little more background about my experience… my hot knees started in 2003, and I didn’t get another episode until 2009, but at that point they became more frequent …sometimes up to 4 times a week and then nothing again for months. I was referred to a rheumatologist and was tested for arthritis and other autoimmune diseases…and then gout(!) as my episodes often seemed to happen after I’d had a glass of wine (Just like to say I’m not a big drinker!) I’ve also been referred to a cardio vascular surgeon. Basically, neither of them had any idea what it could be, and I was told that as it is not affecting my quality of life that it isn’t anything to worry about.

        My knees can be very painful at in the night…I’ve woken up in agony before! This is apparently due to anterior knee pain. However, my knees are never painful when they are swollen and red hot. Like Kristen, when I am having an episode, I can feel the heat of my knees through my clothing. I’ll laugh about it with my friends because it just seems so random…but I have to say it does worry me a little in the fact that no-one knows what is causing it, and I wonder if it is causing me irreversible damage which will become apparent as I get older?

        Next time I get a bout of episodes, I’ll mention Still’s disease to my GP.

        Thanks again for sharing your experiences!

      • Thanks so much for all of the information . I’m getting worried as my knees having been hurting everyday for the last 2 weeks. What’s weird is they feel hot inside my knee instead of outside like they typically would. I went from once a month inflammation to once a year then back to every month then 2x a mo and so on .. I feel like it’s getting worse.. But have no answers or diagnoses . I even went to get X-rays and they were normal… Which makes me believe it may be the paladromic rheumatism. I agree with you pictures are the way to go.. It was the only way I could justify what was going on.. People laugh when they see my knees like WOW they are so hot!! I Do you have positive RA And ANA testing? I feel better knowing I’m not the only one going through this. Thank you !

      • Hi Kristen,

        Hmm…I’m no expert by any stretch, but I would keep making a note of all your symptoms however trival…photos of your knees on your phone are a good idea as you can create an album. Unlike your knees mine I’d say feel hot on the outside…doctor wondered if I had an allergic reaction to something but then said it wouldn’t be showing up in just the one place. As I write, my knees had been hurting a lot of today (tightness and the cold) and then this evening I’ve had 3 glasses of wine and they’ve swollen up (but without pain!) My neighbour felt the heat of my knees through my jeans, and odd as it sounds they warmed my hands up (I’m in the UK). Not hurting now, but still hot…would just like to know what an earth is going on as it is just not normal! Not sure where else to turn though…we have to get referred to specialists by our GPs here in the UK.

        My episodes go in phases…don’t have anything for months, and then I get lots of random ones. FYI I have not tested positive to RA and ANA testing….the only possible diagnosis I had was that the cardiovascular surgeon thought I had an extra rib…!

  3. Hello
    Yes, mine do that too. How crazy, mine have been acting up his whole week as well ! Def. today pretty bad.. Very red and hot today. I’m sorry about your knees as I totally understand all your pain. I am going to a doctor dec 11 so I’m hoping it to maybe get retested while I’m
    Actively having symptoms. Do either of you have anemia, by any chance?? take care..

  4. Wow, looking at your knee pictures made me want to post one of mine. I’ve never been on this site before but if I can figure out how to do so I will. Long story short, I have Lupus, Psoriatic Arthritis, Ankylosing Spondylitis, Crohn’s, and Raynaud’s, all of which I developed after contracting Lyme Disease. I’ve always had knee pain., but not until a really bad case of strep throat this past February had my knees ever done this. They do it all the time now. It’s much worse when standing, after I eat, or after a hot shower. No one here can tell me what it is. How do I post a picture?

    • Hi Lisa, I’m glad you found me. I’m sorry to hear of all your illnesses, that certainly is a lot on your plate. I’m not sure there is a way to post a picture on the comments section of a blog, unfortunately. My bright red knees are due to Still’s Disease, which is a type of rheumatoid arthritis. You could always tweet me a picture @chronicallyjill

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