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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

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.

Coping with the Coronavirus pandemic Created by shannon.ashoori
Last updated 5 Sep 2020, 04:06 AM

Posted by mabelsmom
5 Sep 2020, 04:06 AM

we are doing the best we can. we keep track of the news, wear masks when we have to go out, use hand sanitizer whenever we are out and limit interactions with others.  In Canada there is an APP that tells you if you have been exposed but that is like telling someone the gate is open after the horse has escaped ;(

I try to do most of our errands as my husband has ASS, but I worry a lot, I just try to be so careful - what else can one do?

 

Be SAFE EVERYONE. - Hopefully this will all be over before 2022

Posted by warthawg
29 Aug 2020, 12:33 AM

Hi, I've been isolating all that I can, but I do have to get out and around occasionally. My spouse and I both take a lot more precautions than most people in our area, but I'm actually kinda resigned to the fact that we may become exposed. So far so good but I'm really concerned should I get Covid19 because I have a fair amount of pulmonary fibrosis already. 

Posted by shannon.ashoori
8 May 2020, 09:20 PM

How are rare disease communities coping with the coronavirus threat? Feel free to reflect on challenges you are facing, small victories, or anything else you feel comfortable sharing. My heart goes out to all of you and hope you are all safe! 

Best regards, Shannon 

looking for doctor in eastern Ontario, Canada Created by mabelsmom
Last updated 5 Sep 2020, 03:45 AM

Posted by mabelsmom
5 Sep 2020, 03:45 AM

Hi Everyone!

 

I am new to this and hoping someone sees this and can offer some help.  We are moving to a rural area of Eastern Ontario in Canada and I am trying to find a Dr that has knowledge about Antisynthetase - hopefully in the Kingston area.  We have a Dr in Toronto just now, he is great but this has been as much a learning curve for him as it is for us.  It will be a long drive if we continue to see him so hoping to get some names that he can send a referral for us.  any suggestions are appreciated.  STAY SAFE!

Cancer and Antisynthetase Syndrome Created by pfosse
Last updated 29 Aug 2020, 01:49 PM

Posted by pfosse
29 Aug 2020, 01:49 PM

Thanks for the information.  I was on azithioprine for a year and 10 months and stopped taking it in Feb 2020.  Went back for my 6 month Oncologist appointment in August, no cancer.  Still not on any immune suprressing medications for antisynthetase syndrome and after the initail, horrible flare up that nearly killed me, once the HPV cancer was diagnosed and treated, I have had no more symptoms.  I am back to hiking about 5 miles per day and working out on my weights.  Back to my pre-illness weight.  Have a few long term side effects from such a high dose of prednisone for so long and from the 35 rediation treatments on my neck, but other than that, doing well.  Drs say I am a case that is in remission with no medications.  I feel thankful and blessed.    

Posted by warthawg
29 Aug 2020, 12:37 AM

I developed squamous cell carcinoma about a year ago, some think it may be related to my use of azathioprine earlier in my disease. Got it all removed and I've been cancer free so far since then, but have to keep a much closer eye on my skin condition now. I'm no longer on azathioprine, switched to Cellcept a few years ago. 

Posted by alison1967
10 May 2020, 01:46 PM

So pleased you are free of cancer. I'm guessing the chemotherapy you had as treatment has also suppressed your immune system as it does for all chemo patients, and it has therefore kept your anti synthetase under control, a great side effect! Take care that as your immune system boosts itself back up that it doesn't kick start the anti synthetase again. Great to hear a positive outcome for you after what must have been a difficult time

View Full Thread (1 more posts)
Antisynthetase and Rapamycin Created by elvaelle
Last updated 2 Jul 2020, 03:07 PM

Posted by elvaelle
2 Jul 2020, 03:07 PM

Anyone taking Rapamycin instead of Cellcept? 

Antisynthetase and Rapamycin Created by elvaelle
Last updated 2 Jul 2020, 03:04 PM

Posted by elvaelle
2 Jul 2020, 03:04 PM

Hello,

Anybody taking Rapamycin instead of Cellcept.

 

Thank you

HelpAround Specialty Patient User Testing Created by krystalqle
Last updated 3 Jun 2020, 10:23 PM

Posted by krystalqle
3 Jun 2020, 10:23 PM

Hi Everyone! My name is Krystal, and I am part of HelpAround, a digital health startup that's looking for user feedback on a mobile platform that we're building. The app is designed to help chronic/rare disease patients and their support systems manage their specialty treatments by providing them with any necessary logistical, educational and community support. We're looking for patients who are willing to give us feedback so that we can provide our current communities with a better experience.If you're interested, the UX testing details are below:

  • Goal: Understand which app feature(s) are and are not user-friendly
  • Demographic: Any patient who is currently taking specialty meds
  • Duration: 1 hour (each session will consist of a series of tasks)
  • Platform: Likely Zoom

We would love to hear your opinions and see how we can help improve the patient journey for those with rare diseases. If you are at all interested, please feel free to email me at krystalle@helparound.cc. Thank you so much!

Greetings from Rareshare! Created by shannon.ashoori
Last updated 8 May 2020, 09:18 PM

Posted by shannon.ashoori
8 May 2020, 09:18 PM

Hi Everyone, My name is Shannon and I am the community manager for Rareshare and Rare Genomics. I just wanted to personally introduce myself and welcome you all to the site. If you ever have any questions about RareShare or suggestions on improving the site, please feel free to contact me at shannonashoori@raregenomics.org

We are currently working on cultivating a space for support, encouragement, and community. Please feel free to post in the community forum, as well as engage and offer your insights to others in the community. 

Best regards, Shannon

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.

 

Community News Articles
Content podcast

RGI/RareShare Ask the Experts Podcast Series-Antisynthetase Syndrome

Publication date: 22 Oct 2017

Community: Antisynthetase Syndrome

Podcast

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)
 


Default article

Antisynthetase Syndrome Podcast Series-02/24/2015

Publication date: 24 Feb 2015

Community: Antisynthetase Syndrome

Podcast

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


Default article

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

Publication date: 24 Nov 2017

Community: Antisynthetase Syndrome

Podcast

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)


Antisynthetase ebook

Antisynthetase Syndrome: A Clinical and Research Perspective (Rare Genomics Institute & RareShare)

Publication date: 27 Feb 2017

Community: Antisynthetase Syndrome

E-Book

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.


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

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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.

Visit sanfordresearch.org/CoRDS to enroll.

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Just an old goat with a rare disease!

I am a 58 year old man living in beautiful SW Montana with my wife.  I have been blessed with good health my whole life.  Up until early April I was working out on my elliptical 5 or 6...

PL7
PL7
BT

I am a husband to a beautiful wife called Jenny. She has recently been diagnosed with ASS.

I'm here to get as much information as possible so I can pass it onto my wife. It's very...

Ray

I was diagnosed a year aago with antisynthetase syndrome - Anti jo 1.  I have ILD, reynauds syndrome, polyarthritus, mechanics hands and at this time no muscle involvemnet.  I currently...

123Genetix is an innovative not-for-profit organization created to advance rare disease research with our predictive computer modeling technology. We believe that rare should not mean forgotten. To...

I,am 3yrs in .I need a double lung.UPMC don't think i will make it off the table.because of my triple bypass.But will do the transplant.i,am on 10 at rest more when active.

I was diagnosed with Antisynthetase Syndrome in feb of 2013 at National Jewish Health in Denver, Colorado. My disease process has been life changing to say the least. I'm interested in...

I was recently diagnosed with Antisynathesis Syndrome , Myositis, and lung disease.

I am 55 yrs.old. I was first told my diagnosis was IPF. After more blood tests they have diagnosed me with the...

My 25 year old daughter was recently diagnosed with antisynthetase syndrome at Mayo Clinic in Rochester, MN.

I have PL-7 positive Antisynthetase Syndrome with associated Polymyositis, and a few other autoimmune conditions. 

Diagnosed with Anti-synthetase Syndrome and Interstitial Lung Disease in May and have eventually started treatment in July which will hopefully help improve things so that I can get back to having...
Hi im age 43. Married with 2 kids aged 10 and 8. Work full time (huge struggle!!!) as a lawyer. I was diagnosed with psoriatic arthritis about 12 years ago. Last week i was told its actually ASS...
I am a volunteer podcast organizer for RareShare.
Recently diagnosed with anti synthetase syndrome. Significant insterstitial lung disease involvement. Cellcept as immunosuppressant.
Hi! I am a 49 year old female recently diagnosed with Antisynthetase Syndrome and looking to learn more about it. I am considering myself pretty lucky-- having being diagnosed only 6 months after...
I'm an ultramarathoner and foster father. My dad has always been a runner and used to marathons. Now he's sick with antisynthetase syndrome and fighting for his life.
Diagnosed with ASS anti-Jo1 Nov 2013. 6 infusions of cyclophosphomide

 

12 months ago. Now on methotrexate and prednisolone with gradual reduction. Feeling very well.
Diagnosed in June, 2014 with Polymyositis, ILD, and ASS - Anti Jo 1
I'm a happily married, mother of 3 small kids woman who stepped away from a great career to take care of kids a few years back. In November of 2014, at the age of 38, while my kids were aged 5, 3,...
37 Year old Indian Male, living in London; very recently diagnosed with ASS; and associated Non Specific Interstitial Pneuminitis with pulmonary fibrosis in both lungs

 

 

have joined this...

Paramedic/RN as well as an Ayurveda wellness consultant..Ass with lung involvement

I live in Northern Ireland and my sister in law has just been diagnosed with antisynthettase syndrome
Program Manager, Scientific Programs, RareShare
I was diagnosed with Polymyositis and Interstitual lung disease about three years ago. I was recently diagnosed with antisynthesis syndrome. I am doing much better than I was when I was first...
I was diagnosed with antisynthetase syndrome june 2014 at mayo clinic rochester
I have just been diagnosed with Anti PL-7 Synthatase Syndrome, this particular antibody affects 2-3% of all ASS cases, I could be 1 of 10 world wide
For the moment I'd like to remain a little anonymous. I have recently been diagnosed with ASS & ILD with Anti Jo-1. I am married with 3 young children and navigating my way back to work.
I have many immune system diseases. I started at age 15 with insulin dependent diabetes, then around 40 I found out I had rheumatoid arthritis, I have gastroparesis but things have improved there...
My husband~ish has just had his diagnosis refined to Antisynthetase Syndrome with both Anti-Jo1 and Anti-Ro52 SS-A antibodies.

 

 

Diagnosed with Jo 1 + Antisynthetase Syndrome in February 2014. Started with sore right shoulder in October of 2013. Saw my GP who put me on anti inflammatories and celebrix for arthritis. No...
Diagnosed June 2011 with Anti Jo 1 Synthetase Syndrome, ILD and DM acute onset and spent 9 months in hospital with one month in ICU.
I have been diagnosed with antisynthetase syndrome.
I am 47 years old, married with two adult children, and have an 11 month old grandson.

 

 

My symptoms started with pain and swelling in my hands and knees and slight breathlessness,...
I have a friend with Anti-Synthetase Syndrome and i want know more about it to help her.
I have myosotis antisynthetase syndrome. Fibrosis of the lungs was the start, treated with year of prednisone and cell cept. Did well Stopped prednisone and went down on my cell cept. Now 2 years...
My Mum has just been diagnosed with Antisynthetase Syndrome and I have stumbled into your site looking for some basic information.
I was diagnosed with ASS and BOOP in the summer of 2011. After a year of corticosteroids to treat the BOOP, I'm now on Imuran for the ASS.
44 year old male diagnosed with ASS last year
Diagnosed in July 2011. Being treated by Rheumatologist with Prednisone, Methotrexate, Plaquenil & Fosavance. No lung involvement. First manifested with Mechanics hands then acute muscle stiffness...
I am 29 years old. Recently diagnosed with polymyositis and jo 1 antibodies. I have 2 children and a fiance'.
Hi I have antisynthetase syndrome with all of the myopathies and cronic lung involvment. I would like to see what other people are going threw with this disease and see what treatments they are on...
41 yo male. maybe too healthy till 35. did have pneumonia in 2'nd grade and a few bronchitis bouts. and nowASS right?
Diagnosed Sep 2011. I am married, have a step-daughter, and 2 grandchildren. I have polymyositis and full lung involvement, with Jo-1 & Ro-52 autoantibodies.

 

I was recently diagnosed with anti-synthetase syndrome after a full year of being sick.

 

 

I have worked through the illness and I am a Pharmaceutical Sales Manager.

 

 

This has...
I've recently been diagnosed and am still in the "what?!?" stage. I've noticed there isn't much information available so I'm excited to find this site.
Diagnosed with Antisynthetase syndrome in 2007
I was diagnosed with Antisynthetase Syndrome in 2009

 

Was on ventilator with Boop not interstitial lung disease and in three hospitals over 100 days in 2009. Muscle bx confirmed diagnosis...

My husband has suffered from this disease since June 2011.

There have been times when just being a part of this community has made a real difference to my understanding of the disease, and it...

56 year old male diagnosed in mid-2006. I have 4 kids, 2&2, from 21-27.
I am 43. I am married with two great teenagers (1boy, 1girl). I am a PA, or physician assistant, at a women's clinic at a University. I was diagnosed with Antisythetase Syndrome in November of...
Just found out I was diagnosed with Antisynthetase Syndrome after thinking I had Sarcoidosis for 4 months. Getting strong treatments and scared about prognosis now as my lungs have already been...
I was dianosed with Anti-Jo1 Syndrome in February of 2007, and have been seeing a Rhuemotologist and a Pulmanary specialist since then. I am the only patient either of them has with Anti-Jo1...
All this started after having a small operation for breast cancer in october 2009 after a horrid winter was diagnosed in the spring.
I work for NIH and have information for some studies on Anti-synthetase syndrome.
I learnt 4 month ago about my antisynthetase syndrom starting with pneumonia, skin and joints problems, muscles weakness, .... Now i feel much better using corticoïde and immunodepressor (Cellcept)...
I live with my husband and 3 children 14,11 and 3 years old. My nightmare started in 2007 when I had a miscarriage at 21weeks at the time there seemed to be no explanation for my loss.

 

...

I am the mother of a young woman just diagnosed with antisynthetase syndrome with myositis, interstital lung disease and raynauds syndrome. I am looking for answers and support.
I was diagnosed with Anti-Synthetase Syndrome in January 2010.
I was just diaganosed with antisynthetase syndrome this summer after four years of thinking I had psoriatic arthrits. I have it it my lungs, joints, hands and muscles.
Diagnosed with, and steroid therapy begun for, anti-synthetase syndrome of myositis a couple of weeks before Bastille Day this year. The holiday was wholly appropriate coloration: my old regime...
I was diagnosed in nov 2003, Anti Synthetase with Jo 1,

 

I initially was treated with large doses of prednisolone and Azithiropene I think its also known as imuran, After many months in...
This journey all began in 2004. I was pregnant with my only daughter. I had noticed that I was becoming short of breath quickly, my muscles with aching all over, and I was just tired. I just...
Woke up one morning in Oct. 2008, with extreme joint pain, shortness of breath and muscle weakness. After several months was diagnosed with anti-synthetase syndrome. Started Rituxan in June 2009...
I have been suffering since April 2008 and was just diagnosed with Jo-1 Antisynthetase with Dematomyositis. Before this hit me I had a very active life. I was a runner and completed my first...
I became very ill with Interstitial Lung Disease at the start of 2009 and spent 8 weeks mostly under sedation in Intensive care where the doctors warned my partner I was unlikely to survive. But I...
I have antisythetaste Syndrome. It has been three years now. I have muscle and lung involvement and RA.

 

I have had all the treatments. Which have worked pretty good. (I'm still part of the...
Hi,

 

 

My names Mary, I am 20 years old.

 

 

I have Polymyositis, Scleoderma, Raynauds and being investigated for antisynthetase syndrome.

 

 

I have a 1 year old little...
I am the partner of Alison 1967
I have Interstitial Lung Disease, Raynaud's Phenomenum and myosi
I have Antisynthetase Syndrome, with anti-Jo1. They say I have either Dermatomyositis or Polymyositis,, they're not sure which one. I was diagnosed in December 2009..
Hi

 

My name is Lorelei but on the Internet I am know as Ladymermaid. Just Google Ladymermaid and you'll find out what I am up to out there.

 

I am 52 years old, I have two grown up children, I was diagnosed in 2009 with anti synthetase syndrome (jo-1) with ILD, raynauds, joint pain and carpal tunnel syndrome. I live  in the UK...

Hello, I am recently diagnosed with antisynthetase syndrome about a month ago. I am on Decadron,methotextrate,plaquinel,and alot of other pills. I had a muscle biopsy and the results were normal....
Hi I am Ram, from Cary NC. Diagnosed with Antisynthetase Syndrome in Nov. 2008 at Duke University Medical Center in Durham, NC.
Mother of a 40 year old daughter, 3 children 7, 9, and 12, who was diagnosed with this syndrome last week. We are researching everything we can to find out what works to put this disease into...
I live in MN with my hubby and 3 kids. I was just diagnosed with antisynthetase syndrome within the last week and polymyositis and insteratial lung disease in March. I am looking for info and of...
I live in MN with my hubby and 3 kids. I was just diagnosed with antisynthetase syndrome within the last week and polymyositis and insteratial lung disease in March. I am looking for info and of...
Diagnosed in July 2009 with OJ variety of Antisynthetase Syndrome resulting in severe Interstitial Lung Disease. No other autoimmune disorders or manifestations at that time.

 

 

Was down...
I got sick in the first week in February and after being sick for almost 4 months and many tests later I found out today that I have anti-synthetase syndrone. I discovered this site while...

Diagnosed JO-1 positive in Sept. 2008

 

 

I had quit my job in spring 2007 to go back to school and get my degree in Interior Design. I have been sick for a year now. I was in the...

Hi,

 

 

After a couple of years of going from doctor to doctor, trying to get a diagnose for some strange symptoms, I was finally diagnosed as having Antisynthetase Syndrome.

 

 ...

For the past 15 years, I have been treated for scleroderma, rheumatoid arthritis, polymyosistis, all together diagnosed as Mixed Connective Tissue Disorder. Now I am told I have Anti Synthetase...
Hello!

 

 

I was diagnosed this syndrome two months ago, after being sick for several months after my baby was born.
I'm french. I was diagnosticed of the antisynthetase syndrome in january 2009. I have a beginning of lung fibrosis, phenomene of raynaud and mecanic's hands. I have some muscular pains in my legs....
I am retired to France, living in the Dordogne. I was diagnosed with Lupus in 1991. In 2007 I was admitted to hospital with pneumonia and was there for 2 weeks and had extensive tests. They...
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