Do you lupies have tendon problems?

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VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/29/2016 11:01 AM (GMT -6)   
Hi all,

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

Has anyone had the same?

Thanks

Post Edited (VLou*) : 3/29/2016 11:05:20 AM (GMT-6)


VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/29/2016 11:48 AM (GMT -6)   
Anyone....please?

Lynnwood
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Date Joined May 2005
Total Posts : 7699
   Posted 3/29/2016 11:56 AM (GMT -6)   
Inflammation that "should not be there"? That makes no sense at all, it is so easy to twist an ankle, stress an ankle, have a tight knee or hip, etc, all things that might cause inflammation in the Achilles tendon!! That might be a reasonable comment for other body parts, but as someone with chronic Achilles issues, totally apart from my Lupus, I find it bizarre.

If you are "under surveillance" for a possible Lupus diagnosis, they will be watching the inflammation markers in your blood. We often have higher inflammation due to the Lupus (the over-active autoimmune system) attacking something that is acting perfectly normally. That is, instead of attacking a germ or a disease, the Lupus causes an attack on perfectly normal organs and tissues.

Does this sometimes result in sore/inflammed muscle, tendons, joints, etc? Yes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 3/29/2016 12:04:18 PM (GMT-6)


VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/29/2016 12:06 PM (GMT -6)   
Thanks. Sorry was very vague, it's a long story!

Had a positive lupus anticoagulant test and waiting on the second test and blood culture results. Have all the signs of lupus although all other tests negative. Been suffering for a long time.

Lynnwood
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Date Joined May 2005
Total Posts : 7699
   Posted 3/29/2016 12:12 PM (GMT -6)   
Note that Lupus is NOT DIAGNOSED BY BLOOD TESTS.

Lupus is diagnosed by having at least 4 of 11 symptoms. Blood tests count for only one of these. Check out the link below, Diagnosing Lupus.

Are you seeing a rheumatologist, and is he asking about these symptoms?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/29/2016 12:18 PM (GMT -6)   
Thank you!

Yes back and forth to the rheumy. Just feel like I'm not being taken seriously but hopefully after the positive anticoagulant and my appointment on Thursday she will? Just think she'll concentrate on the fact the ANA was negative and say it's not lupus.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 3/29/2016 12:25 PM (GMT -6)   
You may need to see another rheumy for a second opinion.

One way I often suggest to find one knowledgeable about, and interested in, Lupus is this:

Visit www.lupus.org. Find the page about local chapters of the organization. Find the local chapter in your area and contact it. Ask about the Drs who serve on the local advisory board. These are the Drs in your area who are most interested in helping Lupus patients.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/29/2016 1:05 PM (GMT -6)   
Thanks for your help :)

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/31/2016 7:19 AM (GMT -6)   
I've had my rheumy appointment today. Told me my second anticoagulant rest 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.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 3/31/2016 8:45 AM (GMT -6)   
Yeah, that's not a helpful Dr at all, is it? Sorry you are having a hard time finding the right rheumatologist. Maybe the "lupus specialist" will be more reasonable.

In the meantime, DO start taking the hydroxychloroquine (Plaquenil). It has to build up in your system before you start feeling any changes -- generally somewhere around 3-4 months. Actually, for me I didn't think it was helping at all until I decided to stop it, then I realized it was helpful.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

VLou*
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 3/31/2016 9:04 AM (GMT -6)   
Thanks Lynnwood.

Yeah I've been told it can take that long. Will have to pick it up tomorrow as I didn't have time to wait and I felt so rough today.

Can't believe it's MORE waiting again....it's been going on and on....

She was so black and white and wasn't giving me any clues as to what she thought at all. Although she was very patient with my blubbing and questions! Surely if she didn't think I had lupus she wouldn't put me on that medication?!?!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 3/31/2016 11:15 AM (GMT -6)   
Sometimes when diagnosing an auto-immune disease, Drs rely on our reactions to certain treatments to help with the diagnosis.

For instance, steroids help with pain from inflammation, but would not help at all if the pain were really from fibromyalgia.

Plaquenil is used for a number of auto-immune diseases, not just Lupus. And maybe other diseases as well, I don't know for sure.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1446
   Posted 4/21/2016 4:46 AM (GMT -6)   
What's a lupus specialist?

I Went to rheumy and I had all test positive for lupus and Fibro yet he was never giving me meds .

Ultimately after so much gave me prednisone and planquenil.
On and off.Kept me on GABA pen tin for months ...
When I ask ...he says no solution for lupus just keep coming to me forever.
I can't see doc anymore and lost insurance .This doc turned against me now won't return my calls .
As can't make money through me as no insurance.Thats highly unprofessional as I will get insurance soon and find new doc.
But my question is if they have no cure why they call you every 3 months?
It's very difficult ......
Cilly

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1446
   Posted 4/21/2016 4:49 AM (GMT -6)   
As for tendon problem..
I cannot hold my purse or a bag.
Cannot lift anything heavy.
Extreme pain on and off.

Cannot stand or walk for long.
Cilly

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/21/2016 1:50 PM (GMT -6)   
Cilly, it's to monitor you, because lupus is unpredictable.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

gilmourgirl
New Member


Date Joined May 2016
Total Posts : 1
   Posted 5/11/2016 2:05 PM (GMT -6)   
this might have nothing to do with lupus..
have you ever taken the antibiotic levaquin?
it is notorious for causing tendon damage ,
especially Achilles tendons...even to the point of rupture.
google levaquin / tendons.
it doesn't affect some people but this drug has crippled many
including me.
check it out.
most people are totally unaware of the side effects and damage this
drug causes.
hope this helps.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7142
   Posted 5/11/2016 3:42 PM (GMT -6)   
Pbesides the fluoroquinolines causing tendon problems, Achilles tendonitis can be a sign of Ankylosing Spondylitis especially if you have other joint issues.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
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