Dermatomyositis

[Lucy_4]

Hello I was diagnosed with Dermatomyositis in 2018 and still believe I’m not receiving the right care. I am in hopes to connect with others who can maybe give me some type of hope that there’s Doctors who actually know how to treat my condition.

[hopegalore20]

Hi Lucy 4, Dermatomyositis is quite a difficult condition for Medical Staff to diagnose. It took several visits to see a GP, it was eventually after 6 months, my symptoms where getting far worse. They originally put it down to an allergy of some sort. However, I reached the stage where I could not dress myself. Going to work full time left me just about ready to collapse. Eventually, the GP put me on a Waiting List to see a Dermatologist. I was sooooo happy to see a Dermatologist that could actually tell me what was wrong with me. He brought in another Consultant Dermatologist to confirm his findings as this condition is quite rare. You must see a Dermatologist, they can take Skin and Muscles Biopsies to back up their findings. I am still struggling with this disease as it is very active. I also see a Rheumatologist & Neurologist on a regular basis to control my condition.

I am currently on Presnisolene (Steroids) Mycophenolate Mofetil (Auto Immune Suppressant), Adcal-D3 ( Bone Med), Fexofenadone, Atarax, Atentolol, Omeprazole and steroid creams and steroid Scalp Lotion (these meds mayy have a different drug name is the USA)!

Have undergone various types of Scans.

I hope you get the right treatment and are soon on the path to recovery back to having a normal life.

Wishing you all the luck in the world.

Hopegalore20 x

[periwinkle62 in reply to hopegalore20]

Hello can I ask what the scalp lotion is for? I don't have a rash (I think) but the top of my head is sore on one side. It's different to a headache in that it is surface soreness - if that makes sense.

[Lisalou19 in reply to periwinkle62]

I’d be interested in this too, I don’t have visible scalp rash or sores but my scalp is painful. X

[hopegalore20 in reply to periwinkle62]

Hi Periwinkle62, re your question raised on the use of Steroid Scalp Lotion. The name of the lotion that I am currently using is:Elocon.

I use this particular med due to the severe itch and heat suffered all over my Scalp. The lotion does give me relief. But as like most drugs, there are side affects, the lotion will thin the skin. However, I could not live without it. There is also pain with the itch/heat, but the itch is the main issue, you just feel like screaming.

I hope you have a good Doctor who is well versed in Dermatomyositis as each patient with this condition is affected in many different ways.

Take Care All.

[periwinkle62 in reply to hopegalore20]

Thanks. Before any sort of diagnosis I had a terrible period of itching, burning, stabbing and prickling all round my torso (but no rash). I used to wrap myself in damp towelling to try and alleviate it. I scratched so much, I developed sores. The ordinary GP was no help at all.

[Lisalou19]

Hi Lucy,

I recently opened a Facebook account not in my real name. There’s a page on there which is quite active. X

[Mielathecat]

Hi Lucy

Like you, I took a while to be diagnosed and I would say my then GP was rather more hinderous than helpful and I was eventually diagnosed by a dermatologist. I’ve had DM for nearly thirty years now and enjoy taking similar meds to Hopegalore. I feel it’s trying to find and keep the balance to stay well. I do remember my early days of diagnosis as a nightmare so would be happy to meet you, if easy enough, to have a proper chat to help you through it. I live in north London. Failing that, maybe a phone call. Let me know.

Take care.

Diane

[Lucy_4 in reply to Mielathecat]

Hello , I would absolutely love to chat more. I don’t think I can make it to London so a phone call is nice.

[Lisalou19 in reply to Mielathecat]

How lovely of you Diane 🤗x

[Mielathecat]

Hello Lucy. Sorry, I’ve not rechecked this site for your reply as I don’t use it that often. I sort of expected an alert via the site. Anyway, here’s my phone number 07946 332908, so let’s have a chat soon. I’m fairly free this weekend

Take care

Diane

[Lucy_4 in reply to Mielathecat]

Yes ma’am, any certain times you not free to talk?

[Mielathecat in reply to Lucy_4]

Hi Lucy. Thought I’d replied to your last email but can’t find it now! Probably short notice but I’m free now 7.10 till about 8.15pm, then tomorrow late morning till about 1pm. Or send me a text any time and I’ll phone you back if I can. Cheers

Diane