Anti Synthetase Syndrome - anyone have any feedback? Mind is boggled...

[NemoP1980]

Hi All, hope everyone is well now the weather is getting colder..gloves out for those with Raynauds!

I've just been told i have anti synthetase syndrome which is rare and i cant find much info on the internet about - just wondering if anyone had any direct experience or tips? Am currently on Pred and Hydroxychloroquine and should be adding Mycophenolate / MMF soon. Bit apprehensive about it.

ANY advice appreciated !

Thanks

Nemo

[PMRpro]

Have you seen these?

dermnetnz.org/topics/antisy...

rarediseases.info.nih.gov/d...

They also give some further links.

This is a link to a support group

antisynthetasesyndrome.net/...

I don't know how much is there because I didn't want to sign up - it is new this year so will be a baby site yet I expect. However it developed from a Facebook community so you will find plenty of people with personal experience there. I'm assuming you use FB? I imagine you do as you are the same age as my daughters - even I use FB!

[NemoP1980 in reply to PMRpro]

thanks so much for the info

All the best

Nemo

[PatMat in reply to NemoP1980]

Mycophenolate takes a while to work, but in my case it has been worth it. Big improvement over the months. I was advised to take it with lots of water, two hours after food, and to wait an hour after before eating. I had no issues with it at all.

[PatMat]

Hi - welcome to the wonderful world of Antisynthetase Syndrome! We are a rare breed, that's for sure. I was diagnosed in July last year - I'm 65, and live in the UK. Apart from the fact that there is initially little info out there, and most medics have never seen a case in their lives, there are so many different permutations of the disease (a 'constellation of conditions', I've heard it called). But you are not alone, promise. There is a great Facebook page which I have found to be a lifeline - AntiSynthetase Syndrome Support Group (currently 267 members world wide). It's a fantastic source of information, too - they regularly update their 'Library' of medical info and that's where I saw the dermnetz article suggested in another reply. It's by far the clearest I've found so far. I'm under a great consultant, and am currently reducing Prednisolone. I take Mycophenolate (immunosuppressants) max dose, and also went through six chemo infusions of Cyclophosphamide. It's a rollercoaster for sure, but hang in there. If I can be of help, please shout.

[PatMat]

PS - Just realised one of the earlier replies mentioned the Facebook page already... blame my fluffy steroid brain..... Yes, the website has come from that, but the page is the most active source of support and info at the moment. I should also have said that I have polymyositis, interstitial lung disease (cryptogenic organising pneumonia) mechanic's hands and Reynauds. It's the disease that just keeps on giving....! 😬

[Titchykath]

I have just been diagnosed with this , waiting on the treatment , hoping it delays the progress of ILD