Lupus with overlaps: Lupus with overlaps I have... - LUPUS UK

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Lupus with overlaps

Annastearman profile image
9 Replies

Lupus with overlaps

I have recently been diagnosed with mysotis and anti synthetase syndrome. Ks there anyone else with the same diagnosis?

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Annastearman profile image
Annastearman
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9 Replies
tennissenior profile image
tennissenior

Lupus brings many other autoimmune diseases along with it. I have SLE, Sjogrens, Scleroderma, ITP, MDS, Anemia, Hypothyroidism, and tons of abnormal labs. It never usually presents itself as "just Lupus." It's not unusual. You should be tested for the Lupus anticoagulant factor. If that's positive, you must watch for blood clots.

I think we have our own special one off illnesses. I have Limited Scleroderma as my main diagnosis but also have aspects of Lupus, Inflammatory arthritis and had AI thyroid disease.

windless22 profile image
windless22

Hi welcome sorry to hear of your diagnosis, I'm currently under watch full eye from rheumatologist for myositis as I'm showing positive for myositis antibody they did mri and muscle tests but nothing found other than sytpoms.

angus50 profile image
angus50 in reply to windless22

Hi

I read your reply and felt that I had to reply to you. Please push them for a biopsy if you don't get any joy with the muscle tests as I too did not show up in blood or muscle tests but I could by then hardly get out of a chair and a kind dr believed what I was saying and done further tests including a biopsy and that was sent away for investigation and after nine years of 7 years of moaning etc I got my diagnosis and treatment. I had lost lots of muscle which I am still struggling to regain. So keep at them and I wish you all the best.

angus50 profile image
angus50

Hi

I too have lupus have had it since 1986 then 9 years ago I got diagnosed with myositis although had a hard time getting the doctors to accept that I had something going on so have lost an awful lot of muscle I am not young so I am finding it very difficult to gain it back. I do hope that you are receiving the best possible care. Take care

Annastearman profile image
Annastearman

I have had the biopsy and they have confirmed that I do have myositis, with an anti synthetase overlap. I have lost lots of muscle from my left side but the steroids are helping regain some strength. I am now still on steroids but decreasing but 1 ml every 2 weeks, I am on 20mg of methotrexate and all the other drugs that you require for the side effects of steroids. Looking at going back to work on the 1st June as I have been off since the end of November. I have good days and bad days. The good days last long but the bad days are really bad, I tend to spend 1 day in bed and then the next day recovering.

L-2day4u profile image
L-2day4u in reply to Annastearman

Ah, so you did get the biopsy ( see my response). After 20 years I'm walking and singing ( though I recently had lung issues). My ruemy retired and I cared for my husband through years of cancer (he passed in 2011). My son's in college ( I'm now 52). Despite being frightfully weak at the start, I can now walk and do things though chronic fractures from childhood calcium depletion and 20 yrs of steroids (bad!) cause pain. Thankful for losing 75 lbs steroid weight and reducing steroids to 5 mg. last year. Still don't have a new rheumatologist, so hard to find in my state (U.S.), but taking one day at a time is wonderful medicine next to prayer.

Cheers,

Annie

Renu profile image
Renu

Hi,

I have a mix of lupus and polymyositis. My myositis was not picked up on MRI either, but through biopsy of my thigh muscle. It is important to know and have it treated, otherwise, the muscles continue to waste and weaken. I am now using a walking aid as my legs are so weak following numerous surgeries, but it is really helping. My CK enzymes were very high in the past, prior to diagnosis. Good luck with your treatment. My treatment made a real and positive difference. I find the muscle strength improves on treatment and may dip with flares.

Renu

L-2day4u profile image
L-2day4u

Hello Anna,

Yes, I've had both Lupus and "myositis" in the form of "dermatomyositis"(DM has a rash with muscles being attacked by the immune system). There are other types of myositis such as polymyositis (PM) and inclusion body myositis (IBM). You might want to get information on what type of myositis it is ( I would insist even if it requires muscle biopsy, as they are each different). I've had this mix along with other issues for about 20 years.

It's not an easy thing, but the most important part is how we deal with it. I hope to see you here again and you are in my prayers.

Annie

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