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Antisynthetase Syndrome

What is Antisynthetase Syndrome?

Antisynthetase syndrome is a rare, chronic, inflammatory autoimmune disorder that affects the muscles and other parts of the body. An autoimmune disorder is one where the body’s own immune system mistakenly attacks healthy tissue. Antisynthetase syndrome is characterized by the presence of autoantibodies that bind to enzymes (specialized proteins) called aminoacyl-transfer RNA synthetases. The body uses aminoacyl-transfer RNA synthetases in the production of other proteins, which are vital to the health and function of the body.Antisynthetase Syndrome is a rare, chronic, autoimmune disorder.

 

Synonyms

  • Antisynthetase syndrome
  • Anti-Jo1 syndrome

Recent community news articles


RGI/RareShare Ask the Experts Podcast Series-Antisynthetase Syndrome

Rare Genomics Institute and RareShare are proud to notify you of the upcoming podcast discussing:
Living with Antisynthetase Syndrome -A Clinical & Research Perspective with Dr Sonye Danoff (Johns Hopkins) and Dr Frederick Miller (NIH)
 

View more...


Antisynthetase syndrome is a rare, chronic, inflammatory autoimmune disorder that affects the muscles and other parts of the body. An autoimmune disorder is one where the body’s own immune system mistakenly attacks healthy tissue. Antisynthetase syndrome is characterized by the presence of autoantibodies that bind to enzymes (specialized proteins) called aminoacyl-transfer RNA synthetases. The body uses aminoacyl-transfer RNA synthetases in the production of other proteins, which are vital to the health and function of the body.Antisynthetase Syndrome is a rare, chronic, autoimmune disorder.

Rareshare would like to acknowledge Dr. Frederick Miller, Deputy Chief of the Clinical Research Branch and Chief of the Environmental Autoimmunity Group at the National Institute of Environmental Health Sciences at the NIH Clinical Center for reviewing this content.

The disorder affects about 1-9 of every 100,000 people in the general population and occurs twice as often in women than men.

Name Abbreviation
Antisynthetase syndrome AS syndrome
Anti-Jo1 syndrome Anti-Jo1 syndrome

The causes of AS syndrome are unknown, but it is considered an autoimmune disorder. This means that the immune system, normally in charge of defending the body against external threats, mistakenly attacks healthy tissues. In AS syndrome, the immune system produces autoantibodies to enzymes known as aminoacyl-tRNA synthetases (enzymes involved in the production of other proteins).  However, if the presence of these autoantibodies causes antisynthetase syndrome is not completely understood.

What triggers the production of anti-aminoacyl-tRNA synthetase autoantibodies is also not known. It is considered to be a combination of genetic and environmental risk factors. Viral infections and exposure to dust, certain gases, smoking and the use of certain medications are possible environmental risk factors. In Caucasians, the presence of the HLA-8.1 haplotype is a genetic predisposition for AS syndrome. The HLA genes serve as the blueprint for producing proteins that are in charge of indicating to the immune system what is foreign to the body and hence has to be attacked.

The anti-Jo-1 autoantibody is the most common autoantibody associated with this disorder accounting for about 70% of patients.

There are several symptoms that affect people with antisynthetase syndrome. The constellation of these symptoms along with the characteristic autoantibody defines AS syndrome. Individuals with this disorder may not have all of the symptoms associated with the disorder.

  • Polyarthritis: polyarthritis is having arthritis in more than one joint. The arthritis is symmetrical in nature. It affects both the left and the right side of the body.
  • Myositis – poly or dermato: polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy. Dermatomyosistis is a similar condition accompanied by skin rashes.
  • Raynaud disease in hands and feet: usually, the fingers and toes turn white due to constriction of the blood vessels when the hands and feet are exposed to cold. The hands and feet may be numb, painful or cold to the touch.
  • Mechanic´s hands: mechanic´s hands is the presence of cracks and fisures in the fingers and thumbs on the palm side of the hands, sometimes accompanied by a darkening of the skin due to increased pigmentation.
  • Interstitial lung disease: interstitial lung disease (ILD), also known as diffuse parenchymal lung disease (DPLD), refers to a group of lung diseases affecting the interstitium (the tissue and space around the air sacs of the lungs). In ILD the interstitium thickens due to an inflammation, scarring of the tissue or the presence of liquid (edema) what interferes with the normal pulmonary function.

The diagnosis of antisynthetase syndrome is confirmed when there are antisynthetase autoantibodies present together with clinical features

The clinical features include the presence of interstitial lung disease (once other conditions have been ruled out and not explained by enviromental, occupational or medication exposure), arthritis (inflammation of the joints), Raynaud disease (some areas of the body, specially the toes and fingers, feel numb and cold in response to cold temperatures) and mechanic’s hands (the presence of cracks and fisures in the fingers and thumbs on the palm side of the hands). Polymyositis (a chronic inflammation of the muscles) or dermatomyositis (a chronic inflammation of the muscles accompanied by skin rash) are often present as well.

There are several tests that can be done to confirm the diagnosis and evaluate the severity of the symptoms. These tests would vary depending on each person but can include laboratory tests that look for the presence of antisynthetase autoantibodies (there have been several different autoantibodies identified associated with the disorder).

Additional tests include blood tests to determine the levels of muscle enzymes like creatine kinase and aldolase (the presence of these enzymes in the blood is a sign of muscle damage, but it is not specific to antisynthetase syndrome), imaging of the lungs and/or muscles, muscle and/or lung biopsy, pulmonary function testing and evaluation of swallowing difficulties, that could be done depending on the signs and symptoms in each person.

Oral corticosteroids like prednisone are often the initial form of therapy and may be given for many years. Sometimes, doctors may recommend treatment with immunosuppressants, which are drugs that suppress the activity of the immune system. Immunosuppressants that have been used include Imuran, Cellcept, Myfortec, and Cytoxan. Good results have been achieved for some people using immunosuppressants.

Rituxan may be used in individuals who do not respond to other treatments (refractory cases), especially for persistent lung disease.

Physical therapy and exercise, which can improve muscle strength, reduce muscle wasting, and prevent joint contractures, is of benefit for most individuals.

Every individual is unique and how a disease affects them and how they respond to treatment will vary as well, making it difficult to make broad statements about prognosis. Generally, if there is only muscle involvement, the prognosis is favorable. The syndrome can often be effectively controlled with immunosuppressants and steroids. If there is also progressive interstitial lung disease, the outcome is not as favorable. However, stabilization or improvement of the disease can sometimes be achieved with treatment.

There is no cure for antisynthetase syndrome, as the disease is chronic and usually requires life-long treatment, but in many cases people can achieve remission where there is little evidence of active inflammation.

American Autoimmune & Related Diseases Association (www.aarda.org)

The Myositis association (www.myositis.org)

Pappu R, Seetharaman M. Polymyositis. Emedicine website. Available at: http://emedicine.medscape.com/article/335925. Updated: November 22, 2016.

Antisynthetase syndrome. Genetics and Rare Disease Information Center website. Available at:http://rarediseases.info.nih.gov/diseases/735/antisynthetase-syndrome. Updated: March 10, 2017

Cavagna L, Nuno L, Scire CA, et al. Clinical Spectrum Time Course in Anti Jo-1 Positive Antisynthetase Syndrome. Medicine (Baltimore). 2015; 94(32):e1144.

Benveniste O. Antisynthetase syndrome. OrphaNet website. Available at: http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=81. Updated: May 2014.

Lefèvre G, Meyer A, Launay D, et al. Seronegative polyarthritis revealing antisynthetase syndrome: a multicentre study of 40 patients. Rheumatology (Oxford). 2015;54(5):927-32.

Mirrakhimov AE. Antisynthetase syndrome: a review of etiopathogenesis, diagnosis and management. Curr Med Chem. 2015;22(16):1963-75.

Tapering off prednisone Created by pfosse
Last updated 9 Jul 2018, 11:50 PM

Posted by pfosse
9 Jul 2018, 11:50 PM

From everything I have read, I learned that prednisone should not be tapered too quickly.  I am not sure what "too quickly" means.   I was diagnosed with Antisynthetase syndrome at the end of May (including interstitial lung disease) and have been on oxygen since May 11.  I am slowly staring to need less oxygen and my Dr. is starting to taper the prednisone from 160 mgs to 120 mgs to 80 mgs to 40 mgs (two week intervals).  This seems like a relatively quick taper and I am concerned because I do not wish to have a flare up or for my lungs to hit a plateau in the recovery.  What do you think?  

Looking for a knowledgeable Florida Physician specializing in this Anti-synthetase Syndrome.... can anyone give me a good contact? My insurence is in Florida. I believe I have this disease and need to find a good Dr... Created by Tina Crosby
Last updated 8 Jul 2018, 08:18 PM

Posted by Tina Crosby
8 Jul 2018, 08:18 PM

I am hoping someone can send me in the direction of a knowledgeable Physician on this rare disease... I live in the Fort Myers Fl area but am willing to travel.

New diagnosis and starting treatment....what and when to expect? Created by Staceyv75
Last updated 10 Jun 2018, 12:12 PM

Posted by Jensha_Buskey
10 Jun 2018, 12:12 PM

Hi Stacey!
I sent you a private message. Check your inbox. All the best,
~ Jensha 

Posted by Staceyv75
8 Jun 2018, 04:34 PM

Well, I've had a whirlwind of five months.  I got a sinus infection in January and stopped taking my methotrexate.  My doctor sent me for a chest xray and was surprised to see what she thought was pneumonia.  I began the first of five different courses of antibiotics while my lungs got worse and worse. I finally had a contrast CT Scan in late March and that showed signs of interstitial lung disease. I was referred to a respirologist and my first appointment was pending scheduling post pulmonary testing.  By mid May I was really having problems. I saw my doctor and my O2 was 87 and she decided to admit me to hospital until they could do some tests in order to speed up the process.  They did a bronchoscopy but got no real results.  I also had a high definition CT Scan.  A week after that I saw the respirologist and she put me on Prednisone 60mg and oxygen for exertion (3.5).  A week later I was reassessed by a nurse and needed 4.5 for exertion.  In the last few days of May I was having problems even conversing with the oxygen on.  I went into emerg and they brought me into the back within 10 minutes even though the emerg was full.  They admitted me, did a CT to check for embolism, etc., and more chest xrays.  Then they took a LOT of blood over a few days and put me on a 3 day shock treatment of 1g of Prednisolone.  When my Jo-1 Antibody came back positive I was happy to have some kind of answer. They did another bronchoscopy but I haven't heard anything about the results. And thus far no improvement.

My Jo-1 is 3.9 and my CK is 538.

Yesterday I started with a treatment of cyclophosphomide and followed with a long treatment of immunoglobulin.  I have my second and final immunoglobulin treatment today.

If this starts to work, how long does it take?  I know there are two more medication options if this doesn't work, but my respirologist has expressed concern about getting funding.

I'm 43 years old with an 8 year old boy and husband who both have Asperger's.  I'm their main support network, especially for my husband, who grew up in a house alone with his father who also had Asperger's.  I'm highly motivated to do whatever I need or can do to help myself even a little.

 

Just diagnosed. Questions about lung tests Created by Jkillian
Last updated 13 Apr 2018, 08:55 PM

Posted by BarbieRose66
13 Apr 2018, 08:55 PM

Diagnosis is a scary time. I was diagnosed nearly 5 years ago. The lung tests I’ve had done are chest X-rays, chest ct scans and Lung Function tests. I have heard of people getting lung biopsies but even though I was severe they didn’t do that one on me

Posted by Jkillian
3 Apr 2018, 03:17 AM

I was diagnosed a week ago. I’ve had a CT Scan of my chest and they say I have moderate pulmonary fibrosis. I am being referred to another doctor (I’m assuming a pulmonologist) for additional lung tests. I’m wondering what type tests to expect. Also, how quickly will I get results. I go back to my rheumatologist in May to discuss all the results and where to go from there. I would appreciate any advice. 

Thank you! 

Any help/advice for someone starting this journey Created by BT
Last updated 13 Feb 2018, 03:43 PM

Posted by BT
13 Feb 2018, 03:43 PM

Hi

I am a husband to a beautiful wife called Jenny. She has recently been diagnosed with ASS, though we are still waiting on the exact, specifics to precisely identify the 'type' and then treat with immunosuppressants.

Currently, Jenny is in hospital (her second visit over the past month). She is unable to walk without a frame and then limited to a few metres. She is very breathless too. The ASS has effected lungs and muscles along with vasculitis in the hands and feet, but that appears to have resolved now. The predisone(?) steroids along with some other drug appeared to blast the vasculitis but left Jenny very, very swollen, in her legs especially, and seemed to mark an increase in muscle weakness, the myositis I assume.

She is currently on her last day of immunoglobulin (5 days) and that appears to have eased the cough, fluid on legs easing and CK (?) muscle levels at 300, which is pretty good we are told.

She still has limited strength and a lot of pain. Unsure whether this is the steroids (20mg daily for the past 2 weeks but was IV 1g for a couple of days in hospital before tapering to 80, and 40 now 20). She suffers from high temperatures and sweating once or twice a day and the hospital are unsure whether this is an infection or the inflammation - they will not begin the immunosuppressants until infection is resolved or ruled out.

Although Jen has had a cough for some time - 5 years (doctors seen frequently but they couldn't see an issue and diagnosed idiopathic cough) it's only the last 3 moths that have seen the symptoms really esculate.

So I'm trying to find out what I can about ASS. It appears a very individual experience for everyone, so I know that any responses can only be generalized. I've read quite a bit and see that many, many people are able to live a relatively normal (or even normal) life with ASS

So...

I just wondered and assumed that this first, big flare up is often a bad one until it can be brought under control?  Also, my wife suffers from severe anxiety, any advice to help ease this? She is spending 95% of her waking time in a state of fear - mostly of the unknown I think . She is to be transferred to St Thomas's hospital in London under the care of Professor David D'Cruz in the next day or so. I understand is an expert in this field.

Thanks for your time

B

 

 

Ask the Experts Podcast Series - Antisynthetase Syndrome Created by icrispe
Last updated 29 Nov 2017, 12:58 AM

Posted by icrispe
29 Nov 2017, 12:58 AM

Hi All,

The latest Antisynthetase Syndrome podcast is now published and ready for you to listen!

You can listen on RareShare here: https://rareshare.org/podcasts/antisynthetase-syndrome-ask-the-experts-podcast-series-session-ii-11-20-2017

And on iTunes here: https://itunes.apple.com/us/podcast/rare-genomics-rareshare-podcast-series-ask-expert-patient/id1110553816

Thank you to everyone who submitted questions! We did our best to answer as many as possible.

Best,

Imogen

Posted by cokeefe
24 Oct 2017, 03:35 PM

What is is the cause of Antisynthetase Syndrome?  How does it differ from Polymyositis? Is it possible for Antisynthetase Syndrome to go into remission or be cured?  If so,  what is the recommended treatment? 

Thanks,

Charlotte O'Keefe  

Posted by icrispe
23 Oct 2017, 08:36 PM

Hi Everyone,

I'm a volunteer with RareShare and next week I am recording a podcast where I will interview two experts about Antisynthetase Syndrome - Dr Sonye Danoff of John's Hopkins, and Dr Frederick Miller of NIH Clinical Center. I am gathering questions from the community to ask these experts - please submit your questions via this form by OCTOBER 29, and I can hopefully include them in the podcast (time permitting). Find out more information about the podcasts and the experts on this podcast announcement page.

The podcast will not be availabile to listen to live, but I hope to publish it around November 10.

Thanks so much,

Imogen

Rituxamab Created by SherrylY
Last updated 25 Oct 2017, 01:01 AM

Posted by BarbieRose66
25 Oct 2017, 01:01 AM

I've had recent success with Ritiximab. I had two infusions in August. My lung function improved from 57% to 72%. I have energy, no pain and feel a general sense of 'wellness'

Posted by Virginia Ojeda
28 Jul 2017, 11:00 PM

Dear Sherryl,


Thank you for sharing your experience with the Antisynthetase syndrome
community members. We have found a review article published in the journal
Rheumatology that might give you some insight about the subject.


https://academic.oup.com/rheumatology/article-lookup/doi/10.1093/rheumatology/kew146


It is an overview of the use of Rituximab to treat inflammatory myopathies
(including dermatomyositis, polymyositis and antisynthetase syndrome) that did
not respond to conventional treatment. The authors have compiled data available in
the medical literature from different studies and have analyzed them combined. By
doing so, they have found that 78.3% (359/458 patients) that did not respond to
conventional therapies and were treated with Rituximab achieved some kind of
response (an improvement in at least one of the symptoms of the disease). They
pointed out, that the majority of patients with myositis-specific antibodies
(antibodies specific of autoimmune muscle disease) had a good response. Among
them, the patients with anti-Mi- 2 or anti-Jo1 antibodies showed a greater response.
This does not mean that Rituximab is going to be able to cure the disease, and in fact
there were some patients that did not show any improvement after the treatment.

We hope that you find this information useful.

The Rareshare Team

Posted by SherrylY
6 Jul 2017, 08:17 PM

Has anyone else made a miraculous recovery after receiving Rixan? My dlco was 39. After 2 years of Rixan my dlco is now 82 and I am off oxygen!!! 

test Created by robert_RG
Last updated 27 Feb 2017, 12:34 AM

Have any of you had a baby since your diagnoses? Created by cats_36
Last updated 4 May 2016, 03:58 PM

Posted by cboyer68
4 May 2016, 03:58 PM

I havent,, but if you are in a stable state and doing well there is no reason not to..I have had ASS since I was young and have 4 healthy children..so good luck.. sometimes they can cause you more grief than this disease can.. LOL

Posted by cats_36
5 Oct 2010, 04:05 PM

My last pregnanacy was before this diagnosis. I hope when you try again you get to have a healthy baby. I know that I could adopt if I wanted to because I have been pregnant before. Jen

Posted by twigy17
30 Sep 2010, 08:29 PM

Hello Jen, 2 years ago, I lost my baby at 27 weeks of pregnancy but at that time, i didn't know i was seek. Now, I would like to have another baby and the doctors say this is the good time because of the stability of my symptoms. It's possible to have a baby with ASS in remission but it must be controled. Imuran and steroid can be used with pregnancy. I hope have a baby with success next year ! if your last pregnancy was ok there are no reason to have your tubes ties ! you're young :D Take care of you. Cécile

View Full Thread (2 more posts)
Anxiety and immunosuppressants Created by Whirlingsunshine
Last updated 4 May 2016, 03:53 PM

Posted by cboyer68
4 May 2016, 03:53 PM

Hello fellow homeopathic..I've used Ignatius Amara often for grief and emotional upset and does a great job but unsure if it can be taken with western medicine since I'm not taking any..also have lung involvement and use hydrosol silver nebulizer ed and does great at prevention and treatment of lung issues. I do take a daily Claritin andCo Q 10 as well, follow and Ayurvedic diet, Boswell tablet and ashwagandha, Gotu Kola. All of which can be found at the health food stores. I do really well most days with an occasional problem but doesn't last long. Good luck if you have any questions just let me know

Posted by lildreamer
25 Jan 2016, 10:13 PM

There is also an Antisynthetase Facebook Page

Posted by Whirlingsunshine
25 Jan 2016, 06:50 AM

Thanks Mary - that's a big help and I'll check it out. If there is anything I can help you with - please tell me.

View Full Thread (2 more posts)
Community E-books
Title Description Date Link
Antisynthetase Syndrome: A Clinical and Research Perspective (Rare Genomics Institute & RareShare) Antisynthetase syndrome is a rare chronic autoimmune muscle disorder. Antisynthetase is also known as Anti-Synthetase Syndrome, Anti JO-1 Syndrome, Myositis Synthetase Syndrome, JO-1 Antisynthetase Polymyositis. There are 162 members in Antisynthetase community. In the past year we have created podcasts and ebooks on Antisynthetase syndrome with the collaboration of clinicians, community members and Rare Genomics Institute. 02/27/2017
Community Podcasts
Title Description Date Link
Antisynthetase Syndrome Podcast Series-02/24/2015

Featuring Dr Fredrick Miller (NIEHS, NIH), Dr Lisa Christopher-Stine (John Hopkins School of Medicine) and Dr Jimmy Lin (RGI/RareShare)

08/17/2018
Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017

Featuring Dr Sonye Danoff (Johns Hopkins Interstitial Lung Disease Clinic) and Dr Frederick Miller (National Institute of Environmental Health Sciences at the NIH Clinical Center) answering community questions about Antisynthetase Syndrome (ASS) including the latest clinical and research developments and treatment options. Hosted by Imogen Crispe and Deepa Kushwaha (Music credit: www.bensound.com)

08/17/2018
Community External News Link
Title Date Link
Community Resources
Title Description Date Link
latest review of research 2013

Well detailed primer on AS by the Cleveland Clinic, 2013. Valuable tool for doctors and patients alike.

03/20/2017
Orphanet - Antisynthetases Syndrome

A report about Antisynthetases Syndrome on Orphanet.

03/20/2017

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Enrolling is easy.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

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Discussion Forum

Tapering off prednisone

Created by pfosse | Last updated 9 Jul 2018, 11:50 PM

New diagnosis and starting treatment....what and when to expect?

Created by Staceyv75 | Last updated 10 Jun 2018, 12:12 PM

Just diagnosed. Questions about lung tests

Created by Jkillian | Last updated 13 Apr 2018, 08:55 PM

Any help/advice for someone starting this journey

Created by BT | Last updated 13 Feb 2018, 03:43 PM

Ask the Experts Podcast Series - Antisynthetase Syndrome

Created by icrispe | Last updated 29 Nov 2017, 12:58 AM

Rituxamab

Created by SherrylY | Last updated 25 Oct 2017, 01:01 AM

test

Created by robert_RG | Last updated 27 Feb 2017, 12:34 AM

Have any of you had a baby since your diagnoses?

Created by cats_36 | Last updated 4 May 2016, 03:58 PM

Anxiety and immunosuppressants

Created by Whirlingsunshine | Last updated 4 May 2016, 03:53 PM


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