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  • Tendon inflammation not due to wear and tear

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    Old 03-29-2016, 06:44 AM   #1
    iggyoggy
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    Tendon inflammation not due to wear and tear

    Hi all,

    No diagnosis as yet but been told after an ultrasound that I have inflammation in the archilles tendon which "should not be there and not due to wear and tear".

    Anyone had this and what was the cause for yours?

    Thanks

     
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    Old 03-29-2016, 11:06 AM   #2
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    Anyone...please?

     
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    Old 03-31-2016, 02:07 AM   #3
    VeeJ
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    Re: Tendon inflammation not due to wear and tear

    Hi & welcome. I don't have Achilles tendonitis, but I've read it's mostly caused by strenuous exercise, malformation, improper footwear, etc. Although I've read it can occur in certain AI's (RA, lupus, Sjogren's, etc.), personally I wouldn't suspect an AI unless and until I had *other* symptoms and labs pointing in that direction (which I hope you don't).

    It can also be induced by certain antibiotics. I had massive amounts of Levaquin a few years ago when hospitalized, during which I remember reading horribly worded warning that scared the packing out of me. (Upshot: nothing happened.)

    You could ask what US showed that made your doctor suspect something other than wear & tear---also what those other causes might be. I hope this pans out. Let us know what happens, and good luck.

     
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    Old 03-31-2016, 06:48 AM   #4
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    I've had my rheumy appointment today. Told me my second anticoagulant test was negative so asked me to have it done again. It all got a bit too much and I got upset telling her that it's impacting my life in all aspects and that I need medication. She said that she can't diagnose me as there is not enough evidence but has put me on hydroxychloroquine. I asked if she has diagnosed anyone with lupus without evidence in blood work and she said yes, so I asked what made her diagnose these people and she wouldn't tell me as she said it wouldn't help me! She's referring me to a hematologist and a lupus specialist.

    Had enough now.

     
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    Old 03-31-2016, 10:15 AM   #5
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    Re: Tendon inflammation not due to wear and tear

    Gee, I'd want better explanations, too! I was one of those elusive dx'es, too. I'd had lots of symptoms on/off since age 13 but with no answers, not even plausible guesses. Started getting a recurring rash in my late 30's & tried for 8 (!) years to get it diagnosed. I took myself to a teaching hospital where, finally, the rheum found anti-Ro on bloodwork and a "grossly positive" results on the Lupus Band Test (LBT). I don't think LBT's are done very often anymore & are used only in really elusive cases.

    Was your ANA positive, do you know?

    There is an "all other" dx called Undifferentiated Connective Tissue Disease (UCTD). The dx can be a way-station for people who aren't yet diagnosable but have symptoms & labs redolent of an inflammatory AI. Maybe that's how she's viewing you, but without using the label as such? Hopefully the lupus specialist & hematologist can sort this out quickly.

    Lupus anticoagulant, despite its (misleading) name, isn't a lupus test. Instead, it suggests the need to test for antiphospholipid syndrome (APS), a/k/a Hughes syndrome, a blood disorder seen in a certain percent of people with lupus---but APS can also occur standalone, meaning without lupus. I think one of its diagnostic criteria requires that two sets of tests, done minimally twelve weeks apart, be positive. There's a sticky post (permanent informational post) on APS on the lupus board. The doctor who did the breakthrough work on APS some years ago is English, btw.

    I've taken hydroxychloroquine for many years for non-organ threatening lupus. It's helped me greatly, without any downsides.

    You could borrow library books on lupus & APS. I found them helpful in lining up questions to pose & also to better explain the tests my city doctors ordered. I didn't read the books line-by-line, btw, I just zero'ed in on the sections that felt pertinent. Anyhow... this stuff is very frustrating, that's for sure. Keep us posted. Hang in there!

     
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    Old 03-31-2016, 10:46 AM   #6
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    Hey thanks for all the info.

    Like you, I have suffered for years and been back and forth to the docs and rhuemy.

    I've researched lupus anti coagulant and APS loads and loads. Had all the lupus symptoms for years and the AL has only come about this year.

    Today she said "I'll put you on this medication that helps people with sun sensitivity and rashes" but to the best of my knowledge it's to treat lupus and rheumatoid arthritis ( only).

     
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    Old 03-31-2016, 11:36 AM   #7
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    ANA negative.

     
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    Old 03-31-2016, 12:08 PM   #8
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    Re: Tendon inflammation not due to wear and tear

    Laughably it took me years to realize that I'd become sun-sensitive. Then when I finally started getting that rash, it wasn't either of the two best-known ones, malar or discoid, so none of my 8+ derms recognized it or had a clue.

    For the record, my turned out to be a lupus-specific rash called SCLE, the annular (targetlike) form. (There's another SCLE called SCLE psoriasiform, or papulosquamous that looks somewhat like psoriasis, but isn't.) Like the majority of people who get SCLE annular, I finally tested positive for anti-Ro but, like approx. 1/3 of people with this rash, my ANA remained negative. Also, FYI, SCLE heavily favors women of Western European descent. (My ancestors were all from the UK, so that part fit, too.)

    Do you get recurrent rashes? If yes, feel free to describe. There are actually more than a dozen lupus-specific rashes---who knew?---but only two are common enough to be considered "useful" enough to include in the current lupus diagnostic criteria. (A newer set of criteria has been proposed but hasn't been widely accepted yet, from what I gather; and it includes more rashes than the current set.) Interestingly, my second rheum was the first doctor to eye & recognize my lesions. He redid all my labs & urinanalysis, but also referred me to a dermatopathologist (a derm who's also a pathologist). They made it look easy, after all those years!

    My mom was never diagnosed with an AI, but she had many signs of APS (migraines, mini-strokes, etc.) and indeed needed Coumadin for the last 10 to 15 years of her life. So I've wondered a lot about her after the fact, sadly. (She passed away about 1 yr. after I was dx'ed.) Anyway, here's hoping you get more insight quickly from your new referrals. Drop a line anytime, we're always here. Bye for now.

     
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    Old 03-31-2016, 12:40 PM   #9
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    I'm sorry to hear about your ordeal and about your mum.

    My rashes are tiny red dots under the skin on my hands. I get these from the sun and after a shower. Also in the summer, after the sun, I get red lines mainly on my hands and sometimes on my arms, and very red blotches on my chest. All this started last summer, but had lots of other symptoms much longer.

    My symptoms include splinter lines in my nails, chest pain on breathing in, awful fatigue, inflammation in tendons, eye pain, migraines, loose toe nails and more.

    Also suffer with osteoarthritis in spine, knees, hands and feet.

    Thanks for all the support.

     
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    Old 03-31-2016, 12:46 PM   #10
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    Also I expressed concern today about the LA and strokes etc. She said APS isn't diagnosed unless clotting is involved and I could take aspirin. Do you think it's necessary?

    I don't know what do do, as I want to see if the hydroxychloroquine helps my symptoms on it's own.

     
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    Old 03-31-2016, 01:30 PM   #11
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    Just to add, I'm also currently waiting on a dermatology appointment...10 weeks I've been waiting. The rheumy seems really keen to get that sorted.

     
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    Old 03-31-2016, 03:28 PM   #12
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    Re: Tendon inflammation not due to wear and tear

    Hi again. Following info is from the Skin chapter in the popular lupus hardcover I keep on my bookshelf:
    • Tiny red dots *might* be inflammation of blood vessels, cutaneous vasculitis. I have a lot, on ankles mainly; and my rheum says not a problem unless they ulcerate or turn gangrenous, which they haven't.
    • Reddish lines after sun: are these in a lacelike pattern? If so, *may be* livedo reticularis, disordered blood flow caused by the autonomic nervous system misbehaving.
    • Blotches on chest after sun. Major large discoloration of the overall vee-neck area *might be* tumid lupus. Versus multiple blotches: possibly ACLE (which can be widespread, meaning it's not always malar, aka facial) or maybe one of the two SCLE rashes.
    • But of course only a qualified derm can say!
    As for taking aspirin. This author prescribes one "baby aspirin" daily to patients *without thromboembolic events* who've either tested positive for lupus anticoagulant, whose IgG isotopes is > 25, whose IgM isotope is > 50, or has tested positive for anticardiolipin antibody. He also notes that antimalarials like hydroxychloroquine help to prevent clots, and that the two therapies (hydroxychloroquine and baby aspirin) can & are used together. If you have a thrombolic event, like a clot or stroke or certain types of miscarriage, then a blood-thinner would be necessary.

    APS has its own set of diagnostic criteria, and to me they seemingly comport with your rheum's explanation: one "clinical" finding plus one lab criteria are needed to sustain a formal dx. "Clinical" is defined as one or more vascular thrombosis within 5 years; or certain types of pregnancy miscarriages (that part has multiple definitions).

    Of course you are the boss of you , but since the lupus expert who authored the hardcover I keep describes at such length when & why he prescribes aspirin therapy, it strikes me as being an "accepted approach" for patients who have the lab findings but don't have the clinical events.

    FYI, the rash I had for 8+ years had two stages. The first was the immature stage: red bumps, like big plump mosquito bites, on photo-exposed skin (upper arms, upper back, and a few random ones on chest & upper thighs). Maybe 3-4 episodes a year. In year 5 the mature stage commenced: same bumps appeared but they now "morphed" into perfect red circles with clear centers. Then the circles would expand, further, lose circularity (looked like amobas at that point), then finally fade. Neither stage itched, burned, scarred, or depigmented. (I only write this to convey that the SCLE annular rash can have two stages, but I think some people present in the mature stage.)

    Also, hydroxochloroquine has a slow buildup and can take upward of 4-6 months to reach its full effect, but on the other hand, it's considered a very safe drug with far fewer side effects that steroids or immune suppressants. So in my book, needing ONLY it would be a blessing. It alone doesn't control my ongoing pain, so I also take OTC NSAID's daily. And, like it or not, I avoid and block sun religiously.

    I hope this helps some. Funny, when I read your first brief post, I somehow sensed a long story behind your words... I think many of us here took a very long time to evolve & to get answers. I'm glad you found us. Sending my best.

     
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    Old 03-31-2016, 11:13 PM   #13
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    Thanks again!

    Just remembered I get a specific rash above my wrists, mainly after the sun. Not sure about lacey but they are red/pink and are speckly.

    I also noticed on several occasions last summer mosquito bite looking things. And boil looking things.

     
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    Old 03-31-2016, 11:16 PM   #14
    iggyoggy
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    Re: Tendon inflammation not due to wear and tear

    I have everything on photo for the dermatologist!

     
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    Old 04-01-2016, 02:23 AM   #15
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    Re: Tendon inflammation not due to wear and tear

    Re boil-like things. I had a widespread (head-to-toe) outbreak at age 11. Raised boil-like things filled with faintly yellow liquid, and unlike all my other rashes, very itchy. Never got answers, but years later doctors who dx'ed me strongly suspected "bullous lupus". Some pretty large, size of a quarter.

    Re mosquito-bite-like things. Are they itchy? (Mine weren't.)

    I just didn't fathom that not all patients tidily fit the lupus diagnostic criteria. Sure, most do, but not 100%! My dermatopathologist called me "a subset of a subset", by which he meant positive for ONLY the anti-Ro AB yet ANA-negative. To confirm, he did the Lupus Band Test on 2 old skin punches (he'd had me recall them from the original labs) and a new punch. All were grossly positive, meaning positive for all 5 of the immunglobulins being tested for, which totally sealed my dx.

    You could find pics of the various rashes we've discussed, btw. If the pics you find look plausible, you could search for articles on each to see if yours "behave" as described. Print & take along. (Some doctors hate this, but my 2nd rheum merely nodded his head & called all my suburban doctors VERY bad names.)

    In my standard blood labs, my typical abnormalities were depressed WBC (leukopenia), low Vitamin B-12 & Folate, Vitamin D almost zero, and elevated sed rate. Frequent infections & low-grade fevers, episodic pain from age 13, chronic fatigue, migraines, sciatica, UTI's, erratic periods, 20+ years of horrible GI problems, hair loss, weight loss. Rashes & photosensitivity appeared last.

    To me, that your current rheum prescribed hydroxychloroquine likely means she's pretty sure it's some form of lupus. Did she warn against sun? You should ask about that pointblank. And again, I really recommend borrowing those library books: scanning them will help you make better lists of your symptoms, questions, etc. Also, the one I keep handy has a great explanation of the Lupus Band Test & explains for what kind of patient it's most useful. GOOD LUCK and keep us posted, OK?

     
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