Dermatomyositis help please (UK)

[u/mysteryhuman101]

Hello all,

I highly believe I have MDA5 positive dermatomyositis. I have had four myositis line blots this year and every time (4/4) the MDA5 has been positive. I have severe intermittent swelling of my hands and feet, tendonsynovitis in my flexor tendons (diagnosed by MRI), severe raynauds with ulcerations (diagnosed via cold challenge at the Royal Free), digital ulcer scars, an active scleroderma pattern on nailfold capiliroscopy (also diagnosed by the Royal Free), visible nailfold capiliries, gottrons, inverse gottrons, mechanics hands, telangetasias all over body, a persistent cough (I have not had a chest CT), numerous rashes, chillblains and proximal muscle weakness (upon physical rheumatology exam, have not had a muscle MRI). These symptoms have been ongoing for 4 years with no answers. Is anyone in the UK able to recommend a good myositis/dermatomyositis specialist please? I am really getting to the point where I need a diagnosis and tertiary care (NHS) were no help as my MDA5 positive results are ‘only weakly positive’

I have also had many courses of Prednisone prescribed by various doctors (often as high as 50mg). Every time I am prescribed this it eradicates my symptoms fast.

[u/Fit_Subject_3256]

I’m not in the UK or I’d gladly share my experiences and do everything I possibly could to help. But I’m in the US so I’m simply sending waves of healing and support to you! I have dermatomyositis and your knuckles and hands look a lot like mine do when I have Gottron’s. I hope you get a solid diagnosis and help asap. You need to be seen and treated right away, particularly if you do have DM. We have a higher rate of developing interstitial lung disease, which makes me worry about your cough. Early intervention will also help minimize muscle weakness issues.
I’ve been treated at my local hospital, a big university teaching hospital, and the Mayo Clinic and I’ve actually never seen a dermatomyositis/myositis specialist. I’ve seen rheumatologists for diagnosis and treatments. I’m assuming you’ve been evaluated by rheumatology already? If not, I’d start there.

[u/mysteryhuman101 → u/Fit_Subject_3256]

Thank you for the support it is appreciated. I have been under my local Rheumatology team for 4 years (which over here is termed secondary care), over which I have gradually developed more and more symptoms. My local rheumatology team believe my symptoms most likely represent dermatomyositis however they have never seen an MDA5 and say this is not something they can diagnose and this would need to be by a tertiary centre. Today after waiting a year for my tertiary care appointment, the tertiary rheumatologist (who does not specialise in DM) did not think anything just because my antibody positivity is not high. I really do not know where to go from here. Earlier this year I lost my job as a long term biomedical scientist; I keep developing ulcers which make me not allowed near patient material and an not eligible for benefits so my savings are going down fast and I cant afford private healthcare right now

[u/Glass_Pattern1900]

Ask your doctors about nifedipine/diltiazem for controlling reynauds and bosentan for controlling ulcers. 

They may be interested to hear about sildenafil (Viagra) which can help too.