What does remission look like for antisynthetase syndrome?
What does remission look like for antisynthetase syndrome? Do you have to continue with immune suppressants, steroids and antibiotics? Also, has anyone recovered to the point they can get off oxygen? My husband has antisynthetase with interstitial lung disease and is on 2 liters of oxygen. He’s been on them for 16 months and Rituximab every 6 months.
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I see that your husband has been diagnosed with the antisynthetase syndrome. From your question, I'm assuming that he has been told that he is now in remission, is that the case? Has your husband's doctor indicated that he might be in remission? Is your husband responding to the treatment he is receiving?
I found a few members who have discussed this rare disorder and I would like to invite them to discuss this with you, @jamieray6212, @nancykay1888, and @tstefanelli.
I did some research and found some information on this disorder. Here is the link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5006392/,
As rare disorders like this need careful medical attention, I would encourage you to seek a second opinion from a multidisciplinary medical center, such as a university medical school or a facility like Mayo Clinic. These facilities are generally research-oriented and have good outcomes for the diagnosis and treatment of hard-to-treat medical issues.
Are you near a medical center like this?
He isn’t in remission yet, just curious if he does go into remission what it will be like. He has a great team of doctors they the university of Utah. Just trying to do more research but sometimes I get lost in all the medical talk. Thanks for sharing the link!
I'm glad to hear that he is being seen at a university hospital. It's good to be hopeful about his future health.
I hope that remission is a possibility for him in the future.
Here is some information from the Myositis Association. If you read the article, it does state that remission is possible. Here is a quote from the article,
"Antisynthetase syndrome can go into remission, especially for those with milder lung disease, but patients are more likely to remain symptom-free while continuing treatment. Flares tend to occur when medications are tapered too rapidly."
You can read the entire article if you click on this link,
I would appreciate learning more about this disorder and your husband's response to the treatments. Will you continue to post updates?
Yes, for sure!
I was diagnosed with AntiSynthetase Syndrome Oct of 2020, I also have Sjogrens.
I take Myfortis and Prednisone and have failed to wean twice. First time was told to go from 5mg daily to 5 mg MWF, flared.
Then went down by 1/2 mg/ week,
flared again! And I mean FLARED!!
Had to go up to 29 mg for a month😢
I’m now on 10 mg and watching for a flare, which in my case it’s the Mechanics Hands rash ( ASS symptom) and or dry mouth and dry ear canals that itch ( Sjogrens).
Initially thought it was Prednisone withdrawl symptoms.
Next… Accupuncture and decrease by 1/2 mg per week?
So much to learn and I am so thankful for this support group!❤️
@cantek I certainly feel for you as you taper your prednisone. It has taken me so long! I’m now working with a different endocrinologist and she has me taper 1/2 mg per month. It takes longer, but iv’e had no problems. A slower taper was the way to go!
Do you think your endocrinologist would be willing to let you do a slow taper? Ask her!!
My Rheumatology Clinic is let’s say “ less than responsive”. I am figuring this out on my own for the most part.
They were very good with diagnosing but appear underfunded to be considered a comprehensive clinic.
There is a huge need for a Social Worker for a support group and a Triage Nurse with some empathy who actually returns calls…