Just diagnosed scleroderma/myositis - any help or guidance appreciated

[ruablue]

Hello all,

First time posting…. I have noticed just how incredibly helpful and supportive this community is so figured I would be vulnerable and ask for help.

I have just been diagnosed with overlap autoimmune disease- systemic sclerosis/myositis - symptoms include raynauds, interstitial lung disease, (ILD), thickened fingers with pain and stiffness, achy thighs and upper arms. Positive ANA with nucleolar pattern; PM/SCL autoantibodies and positive rheumatoid factor.

I am utterly overwhelmed and just trying to take it all in.

I am seeking to learn from anyone else that has had a similar start to their autoimmune journey. I have an appointment with my rheumatologist and respiratory specialist this week and wondered are there any questions I should ask - there is just so much to consider and I just don’t know where to start. Sorry my query is not very specific but just hoping for some insight from those of you further along in this journey into the unknown.

Thank you so much for your help in advance

[CLSH]

Hello. I too have been diagnosed with systemic sclerosis and myositis overlap.

I would be asking your consultant about the treatment plan (medication) and also what regular tests they will be asking for. I have regular lung function tests, heart checks and scans. Plus blood and urine tests. This is a disease that needs lots of monitoring.

It might also be worth asking how the disease is effecting you. You are right it is very overwhelming but the more you know and understand the easier it is to deal with.

Good luck!

[ruablue in reply to CLSH]

Thank you so much much for all of your advice - this is incredibly helpful

[KatieAnna]

Hi, I'm sorry to hear that you're on the start of a new and currently scary journey. I was diagnosed 20 years ago and remember the shock of knowing that everything that I'd assumed about myself and my health was now in turmoil. I'd like to reassure you that although everyone's journey is different, you will adapt to the fact that you need more medical attention and intervention than you'd planned for your life. Things will calm down as you learn more about your particular disease profile and response to medication, and how to monitor and interpret symptoms alongside your medical team. They will learn with you too as no 2 patients are the same. There are different stages on the journey as you gradually accept the new normal and work through the grieving process for what you thought was 'you'. You're still intrinsically you but with some new challenges to face and adapt to. There are lots of people who want to help you and people here who know exactly what you're facing. As you embrace this next chapter in your life I hope you find kind and knowledgeable doctors and nurses who guide you along. After 20 years of treatment for chronic and acute stages, several multiprofessional teams and the kindness of strangers, I'm still here and enjoying what is mostly a normal life with family and friends. I wish you well and hope you soon find a calm space to process everything. Ask any questions that come to mind whenever you hear new information about the next plans and steps. You'll soon become very knowledgeable! At one stage I remember giving a mini lecture to the young nurses about what scleroderma is while I was having a colonoscopy!! 😂 Take care and stay well. X

[ruablue in reply to KatieAnna]

thank you so much - this post made me both cry (with relief and gratefulness) and was incredibly comforting. It is indeed a scary prospect but it is good to know there are incredible people like you (and CLSH in the post before you) who are so willing to comfort and guide a stranger in need. Your words have helped to make my new journey a little less daunting! Thank you from the bottom of my heart 😊

[KatieAnna in reply to ruablue]

I'm glad to have been of some help. Take care and lots of love x

[ClaireSey]

Oh how I remember the emotional turmoil in the early days of diagnosis... youve been given great advice. This site is brilliant for for information and I would recommend not trawling the internet as a lot of the information is outdated. I actually contacted the team of Prof Denton at the Royal Free and secured an appointment at a satelite clinic he does yearly in Bristol. He is a world leading expert on our particular rare disease, and now works with my Rheum Consultant on a `as and when` basis.....there a a lot of consultants out there who dont know enough about this disease .... I am 6 years down the line and have accepted this condition as part of me now. look after yourself x

[ruablue in reply to ClaireSey]

Thank you so much for your kind words! I have genuinely been so bowled over by how wonderfully caring, empathetic and supportive everyone has been - how giving of your stories and knowledge sharing - your words have really lifted me - day by day this all seems a little less daunting and a little less lonely. I will be forever grateful for the kindness you have shown. It truly is appreciated 😊

[Nw6London]

Hi there, the entire community has been where you are at one point or another. You're definitely not alone. ❤️ So many knowledgeable people here, sharing their journeys and asking questions. You're in great company!

I too have been recently diagnosed with diffuse Systemic sclerosis and have also started medication (hydroxychloroquine) to slow progression of the disease in the (now) active stage. My disease has been rapidly progressing (raynauds and skin tightening mostly), but no organ involvement. One thing that I started doing was recording all my "symptoms". The disease evolves and randomly, things happen in the body and we don't understand why, until we start putting the pieces together. It really helps the medical team to see pictures and understand the details (dates, duration of attack, where in the body etc...). I use a program called Keep and everything is in one place that I can refer to.

Separately, there's also a series on audible on scleroderma and there's one in particular on ILD. Let me see if I can find it and send it to you. It's a discussion with medics and those living with the condition. Very interesting. Good luck with your appointment.

[ruablue in reply to Nw6London]

Hi NW6 - thank you so much for sharing - something to listen to on my walk tomorrow.

And thank you also for being so generous with your story and the insight you have shared. I will definitely do the diary of symptoms (I’ve had some strange ones ha ha) and will try the keep app - genius idea!

The ILD piece is the most worrying for me but hopefully with my new care team - we will get ahead of it! Breathing is rather important ha ha.

Thanks again for your kindness - it really does make a difference - you have made me smiley warmly in gratitude for the kindness of strangers- I hope you’re taking care of yourself too 😊

[Nw6London in reply to ruablue]

Yes, I understand. It can be very worrying! You should also find some valid questions to raise with your team from the discussion too!In case you missed it above...

Five part series on scleroderma here:Listen to Scleroderma Education Podcast by Valerie Doyon on Audible. audible.co.uk/pd/B09PC32819...

Episode on ILD:

Listen to Interstitial Lung Disease with Dr. Chris Ryerson and Jen by Scleroderma Education Podcast on Audible. audible.co.uk/pd/B09Y84XH7G...

[OldTed60]

Hi there. I too understand how huge being newly diagnosed feels and how overwhelmed you must be.

Although my Overlap CTD diagnosis is a bit less clear than yours, I too have nucleolar ANA with a rare scleroderma antibody which points to Myositis overlap. I was already hypothyroid and then initially misdiagnosed with rheumatoid arthritis 12 years ago, then rediagnosed with primary Sjögren’s. Then I had overlap systemic sclerosis added 3 and half years ago and it now looks likely that I had PM, rather than RA, all along. So the business of being in shock and then feeling misdiagnosed and then having to come to terms with each re-diagnosis has given me some good emotional armour plating now I guess.

And as someone else here rightly said, knowledge empowers us. And now I’m fairly sure I know better than my doctors about how my body works..or doesn’t .. and what is actually wrong with me.

Fortunately I don’t have lung involvement but I credit my present rheumatologist for getting me straight back onto immune-suppression, Mycophenolate, when I started showing early signs of fibrosis. My main problem is severe gut involvement from top to tail - which is irreversible now I’m told so I’m on a fortified liquid diet.

The treatments I’m on now have pretty much halted the skin and lung involvement and are mitigating tissue damage from secondary Raynaud’s. So, other than gut, I feel pretty lucky to have found a rheumatologist willing to treat my overlap CTD aggressively, hopefully mitigating further damage and modifying existing problems in my joints, nerves and ligaments. There are very effective treatments out there now to keep scleroderma and PM plus extras in check. So hopefully being diagnosed and treated will be key for you as well.

Meanwhile just be very gentle on yourself - you need lots of TLC at this shocked stage and as you can see from replies - you are not on your own. And remember - you are still the same person you always were and just because your body is attacking itself presently, it doesn’t fundamentally change the person you are inside.

Take care

OT60

[ruablue in reply to OldTed60]

OldTed60 - thank you so much for your compassion and for sharing your story. It sounds like it’s been a topsy turvey journey for you - I agree that the coming to terms piece is a tough one - but the response to my holler for help has been so incredibly supportive and comforting.

I totally understand the frustration of knowing your body and not feeling the medical experts get what you’re saying. It was actually my respiratory consultant who tested for autoimmune autoantibodies- my original rheumatologist told me there was “nothing rheumatologically wrong with me”! I really felt he was wrong so went private to get a second opinion and he immediately confirmed my diagnosis! Although scary it was actually a real relief to be diagnosed- I felt then that’s it’s something we could begin to address.

Your gut issues sound rough- was that one of your primary symptoms? Sounds like you have a great rheumatologist who is really listening to you and supporting you with the best treatment. So glad lung involvement has been stopped in it’s tracks.

Your sweet words have really helped - sending a BIG thank you hug. Have a lovely weekend 😊

[Brychni]

Hi ruablue, sorry I can't offer any advice, sounds like I'm a couple of steps behind you in terms of diagnosis and treatment so I have only questions! In particular what have you tested positive for? Which antibodies? Also your ILD symptoms, if any. Best wishes