Not lupus now but dermatomyositis and overlap syndrome!

[Woods01]

Morning,

Does anyone on this group suffer with the above. My initial diagnosis was cutaneous lupus as it was my skin swollen and red and Patches on my body. This progressed to aching arms and hands and sore mouth and tongue. My ck levels were in the thousands. This is a new diagnosis and I don’t really have an insight into either. I am a 40 year old female and I am told that this is unusual as it is normally the over 55’s. Anyone have this? What symptoms do you have? Will it ever be controlled? What meds do you take?

Thank you all in advance for your help, I am at my wits ends, especially with the facial swelling as I can barely open my eyes and I have 3 young children 😪

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Hi there. I don’t know too much about Myositis myself although I have a pointer to it or Scleroderma in my ANA pattern - but so far normal CK. I think overlap syndrome is when you have a few full blown rheumatic diseases rather than a mix that hasn’t yet developed into any one specific full blown disease eg MCTD or UCTD.

I guess the important thing is what treatments you’ve tried or are to take to get this hopefully under good control? There are quite a few drugs that could really help you I’m hoping. I know from personal experience that it is very hard to get your head around when a diagnosis changes. Take care.

[hopegalore20]

Hi Woods01, sorry to hear that you are really suffering with this condition. It can have a big impact on your day to day living.

I was diagnosed with Dermtomyositis in Jan-15. I started off on 60mg of Presnisolene (oral steroidd) with Methotrexate, Adcal-D3, Fexofenadone & Atarax along with other steroid creams for my skin and steroid Scalp Lotion.

Methotrexate was not very effective, so I was switched onto Mycophenolate Mofetil. In between, I go for Truxima Infusions. Also had IVIG Infusions.

Its a matter of working with your Doctor and Consultants to find the best treatment for You.

Dermatomyositis does leave you feeling totally worn out by just doing simple tasks. The itch drives you insane. But get, we have got to keep going and hoping that one day, we will "kick it into remission".

I hope you find the correct course of treatment.

Take Care x

[Woods01 in reply to hopegalore20]

Thank you so much for replying. It is nice to be able to message someone who has the same thing. They have scared me saying that it can be caused by an underlying cancer and I need checks for that. Did you have a checks done? Do they keep checking you for things like that? Have you constantly been on medication?

I had a private appointment with Professor Chinoy in Manchester last Friday and I am currently on 400 mg of Hydroxychloroquin and 40 mg steroids.

I go back to see the rheumatologist next Thursday. They have said they want to get it under some control before they give me some other drug to maintain it but have not mentioned what.

Have you been symptom free at all? How do you manage with work and day to day? Do you mind me asking how old you are?

Sorry for all the questions but you are the first person I have had contact with that has the same thing as it’s so rare.

How are you now?

Thanks in advance, Woods x

[hopegalore20 in reply to Woods01]

Hello Again Woods01, as Dermatomyositis is such a rare condition, what they try to establish is"what may have triggered it"!

Cancer is always the underlying trigger. It is always in your best interest to go through all the checks/scans available.

I had a Pet Scan done. This is the o e in which you drink a Nuclear Solution (Radioactive) then you are scanned from head to foot.

Also had MRI Scans, CT Scans, EMG Testing, DEXA Bone Scans Pulmonary Tests ECG Checks. Every test out there.

I was on Hydroxychoroline, but took a severe reaction to it.

I also see a Neurologist, Rheumatologist, along with frequent visits to a Dermatologist.

I had to stop work. As I have very little energy, I depend on my husband to wash and dress me. This disease does still your life from you. I just wish I could find the "wee switch that turns everything back to normal.

I hope all goes well with your scheduled appointments.

Good Luck. X

[Woods01 in reply to hopegalore20]

Thank you, is there no improvement with the drugs you take? What reaction did you get to hydroxychloroquin? I currently have an all over body rash and my face and eyes are swollen. Do you look different in your face than before?

My husband has had to take time off to look after me and our 3 children who are all primary school age. I’m only 40 and don’t think I can cope with being dependent on my husband, not being able to look after my children and giving up my career which I have worked years for 😢. I suppose the main thing now is having all those tests done making sure I don’t have any cancer.

How do you stay strong? Has it gone elsewhere? A neurologist hasn’t been mentioned to me, should I be seeing one too?

I’m so sorry for the bombardment of questions but having only just been diagnosed i’ve so many questions especially from someone who understands this awful thing we’ve been inflicted with.

X

[hopegalore20 in reply to Woods01]

Hi Woods01, re: seeing a Neurologist, this gives you the added benefit of a professional who knows how this disease impacts on the immune system and the nerves. Anyone who can help it worthwhile seeing, all these super brains working in unison to find a cure is all we can ask for.

I have also seen a Phyclologist. As there are times when you feel that life is not worthwhile, deep dark thoughts creep in. Speaking to someone in this field does help. It let's you express emotions that you have hid from your husband and family.

This illness does take a great chunk of your life. It turns it on its head. However, always remain hopeful that when you wake up to greet another day, this will be the day that you "get YOUR life back".

I had a bad reaction to the Hydroxychoroline on both my arms, they went extremely vibrant red with huge raised spots and an itch that made you want to pick up a chain saw and cut your arms off.

You are very young, you and your hubby and the kids will all get through this.

Please keep me updated with your hospital visits and treatments.

Take Care x

[hopegalore20 in reply to Woods01]

Hi Woods01, meant to say that the drug treatments that I have been on since 2015, have had very little impact on my condition. Probably done more harm than good, but I believe that I would not be here without them!

Yes, my face is swollen, I believe the term is "moon face", due to long term steroid use. The skin on my face is very red, heliotrope around the eyes (purple rash) blotches all over.. I would describe myself as an oil painting, very rare one... 😃 X

[Woods01 in reply to hopegalore20]

Thank you hopegalore, my face sounds very much like yours. I suppose we just have to try and stay positive and hope we find that one thing that works for us. Thank you for answering all my questions. If you need to talk just message me. I am grateful to be able to ask someone else going through this.

Keep strong 💪🏾 xx

[hopegalore20 in reply to Woods01]

Hello Woods01, I meant to say that I will be 57 years young this July 19.

You maybe offered Infusion treatments from your Rheumatologist, they are very worthwhile.

Re Day to Day Life, it is a struggle as you know doubt are fully aware.

Although the drugs that we get to help us live with this illness, they also have horrendous side affects.