Diagnosed 6 days ago with Dermatomyositis following muscle biopsy. Have been referred to Rheumatology by Dermatologist as looking likely for Systemic Lupus Erythematosus too.
I am due to commence a new teaching post (I teach Reception Class in Primary School) next Monday. The dreadfully itchy rash that initiated all these investigations is slightly improving with 50mg daily prednisolone but I am also now having frequent muscle weakness issues.
Are there any DM sufferers managing to hold down a teaching job? Am I safe to be working with this dosage of steroids? Might I improve quickly to get in to work? I need to figure out what to say to the new boss and to make contingency plans if I’m not going to be getting a wage!
Thanks in advance for any advice.
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PinkLadyNo1
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Hi! Sorry to hear about your health issues..but getting a diagnosis at least takes away all of the guessing! I hope that the Lupus doesn't rear it's ugly head... I have Polymiositis, diagnosed in February, and it has been a rollercoaster. I did find that the steroids made me feel like a superhero... But a high dose isn't a good idea longer term, so it may be that the dose is lowered and you have some issues again? I would certainly talk to your Rhuematologist regarding your risks around starting your new job. Well done in this climate especially, on finding a job that you are looking forward to starting, but please think of your wellbeing and make certain that you will be safe.
Wishing you all the best in your job and health . Take good care!
Hi PinkLadyNo1, I have had Dermatomyositis for roughly 5 years & 8 months. I can relate only to well to the severity of the itch. I started on 60mg of Prednisone for a couple of years, slowly winding down now to 10mg daily.
I can only say that without the Prednisone, I would not be here today.
I have worked all my life, until coming down with this Autoimmune Disease. My muscles got so weak that I could not dress myself. When I went to work, it was really bad, I could hardly lift my fingers to type, it was agony. My skin was vibrant red and the heat and from the skin made me feel like screaming, evenly, I had to stop work. I have tried various cocktails of drugs:-
> Methotrexate by oral form and be self injecting.
Hydroxycholorquine Sulfate, took a bad reaction to this Medication, stopped it.
> Mycophenolate Acid, was too rough on my stomach.
> Mycophenolate Mofetil.
> Elocon Scalp Steroid Lotion, could not live without it.
> Cocois Gel to came down the scalp heat/itch.
> Elocon Steriod Cream for Body Itch.
> Dermavate Steriod Cream for Face itch.
> Risedronate, bone med, did not work for me.
> Alendronic Acid, bone med, did not work for me.
> Adizem to control Blood Pressure and time stop bone wastage.
> Atarax to help at night with the itch and has a sleeping agent to help you gain some sleep!
> Quinine Sulfate, to help with the severe muscle cramps.
> Ferrous Furmarate to help iron levels.
> Co-codamol for pain relief
> Amitriptyline also for pain relief.
> Sertraline is an antidepressant, to help with the very bad mood swings and bleak moments.
> Prograf/Tracrolimus this is the main drug to suppress my immune system. My disease is still very active, hoping one day to send it into remission.
The disease is very rare, anyone who has this condition reacts differently to the meds listed above. It is a matter of finding the right cocktail of drugs that will work for you.
Your Dermatologist and Rheumatologist will work together to find the right treatment, it may also involve a Neurologist.
I hope you find the right meds to steer you on a path to controlling this condition and leading a normal life. Take Care and Keep Safe during these very uncertain times.
My appointment with the Rheumatologist concluded with advice to take 7 weeks sick leave whilst I undergo loads of tests for malignancy and potential damage due to the Dermatomyositis. I have started on 200mg Hydroxychloroquine to run concurrently with the 50mg prednisone.
It seems that my DM is unlikely to have much muscle involvement however I feel so incredibly weakened. Perhaps it is because the itching, burning rash has been so poorly managed since June that I am worn down. Hopefully I will be able to recover some fitness.
The weight gain seems to have intensified this week, with me getting a full on moon face and triple chin. I’m now 2 stone heavier than at the outset. I don’t look anything like me!
In terms of work, I’m really worried that managing the rash is leaving me so exhausted that I’ll never cope with a full-time teaching job again. I get about 2-3 hours sleep a night if I’m lucky, it takes about an hour longer to get showered and dressed in the morning because I am so sore and my skin feels so raw that it is impossible to concentrate on the simplest of tasks. By lunch time, I’m exhausted again and have to lay down, tho that never seems to result in sleep.
Additionally, I am still getting frequent palpitations, hot flushes, muscle cramps and spasms in my hands & feet. They are mainly at night so frequently disturb sleep. These often last up to 30 minutes which means that I have to just wait it out. - Tricky when getting a cramp whilst driving home from a hospital appointment on a dual carriageway! I’ve adjusted my diet to include more potassium and magnesium so hopefully there will be eventual improvement.
Has anyone had any success claiming PIP or anything to help towards paying for all of the prescriptions etc? I have a prepayment certificate now but not everything is available on that (paracetamol, sun block, cotton gloves for rash dressing, vinyl gloves for applying steroids & emollients ....) and I’ve had to buy clothes because I’ve gained weight and because I literally can’t bare the pain that most clothing causes for my skin.
Sorry for the lengthy post but I’m becoming more stressed by the financial implications of this diagnosis and need to find some light at the end of the tunnel to reassure me that all this can be managed. I am used to being in control of my health, fitness, finances, etc. and this situation has pushed me right out of my comfort zone.
There is absolutely no way I would be able to work. Kudos to you for pushing through as far as you have. With steroids, perhaps you will be able to continue. Know that if you need any accommodations to help make life easier, it is completely valid and worth it! Making one task easier can make it so another task is doable, when otherwise It wouldn’t be. Send me a message if you need to chat.
I also recommend all of the Myositis Facebook groups. They are so helpful and supportive in helping get through the difficulties involved with this disease.
Thank you Jobug. I really appreciate your kind reply. I’ve browsed through the forms and application process for some benefits today. I will need to get medical advice as to whether they will support my claims but at least it is worth a try to get some semblance of stability. Thanks again.
Hi Pink Lady, if you haven’t already completed the PIP form a word of advice is to seek support with writing it. I went to the county council for help. Good luck xx
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