New to community - malar flush

[Goldyukr]

Hello. I am new to this community and wanted to say thank you for all your informative posts. I, at this point, have not been diagnosed with Lupus. However, I do have Raynaud's, suffered a stroke at 41 that the doctor now feels was due to vasculitis (though currently not suffering from), autonomic neuropathy, myopathy with secondary muscle junction dysfunction, fibromyalgia...and much more. The majority of my symptoms are neurological and some muscle obviously. However, I also suffer from malar flush (that's what my neurologist calls it). In the past, it would only happen when I would get anxious. However, almost every day for the last month I turn bright red on my nose, cheeks, chest and even shoulders at times. This is usually accompanied by a low grade fever. It will dissipate if I use cold packs. My GP recently said she feels it looks like lupus, but maybe medicine induced. I am currently doing bloodwork (again). I really appreciated the advice to be sure to have sun exposure before getting my ANA tested. Does anyone else have this sort of 'rash'? Oh and I also at times suffer from this on my feet - they turn bright red after a shower or if I stand on them for any extended period of time. Not sure if that's the raynaud's or not. Thank you.

[Hidden]

You are most welcome Goldy, any time.

Yes I have the rash. Sometimes it is lighter than others, my useless former Rheumy could not see it as evidenced by her GP update letter after each yearly visit. No malar rash began each letter. Hey ho.

Skin involvement can be an added problem. I think it takes various forms.

I am sure others will be along to share their stories with you.

Make yourself at home, you are not alone

⚽️

[Goldyukr in reply to Hidden]

That's really terrible when a doctor does not validate a symptom. I waited for 3-1/2 years to be told that I had a stroke though I had multiple MRIs before that. They were always looking for MS because of my neurological problems, but totally ignored the stroke. Thanks again. I really appreciate your insight.

[jacclaire]

It's funny in the summer and various times I get the rash and have all ur symptoms and more and my blood even comes back saying I have lupus but my stupid rheumatologist says cos she not seen rash it's impossible I have it. I went second opinion and confirmed lupus but the first diagnosis was from the head rhumatologist in the hospital!

[Goldyukr in reply to jacclaire]

Have you taken pictures of yourself with the rash? I've started taking pictures of everything - rash, swollen knees, mouth sores... They aren't pretty, but it helps with the doctor's visits since it never seems to happen on the day that I see them. I hope you can get a good second opinion.

[Hidden in reply to jacclaire]

You have very right to a second opinion, or, as I put it to head Goon Pot at surgery, first opinion, as I had never seen a Lupus specialist not even for diagnosis. I would write a condensed, reasoned couple of paragraphs that you can read to your Goofy Practitioner to state your concerns and not unreasonable request to see one. Worked for me! Got more blood work and two extra diagnoses from Lupus specialist than I had had in 14 yrs under useless Rheumy. She denied my malar rash everytime I saw her, but everyone else saw it!

Ask Lupus UK for a specialist centre near you. They have a list. They are soo helpful!

Best wishes. Speak up, and take a witness to every appointment!

⚽️

[misty14]

Hi golds

Welcome to the forum, glad you've found the replies helpful. I too get the malar rash and flush over cheeks and bridge of nose. I'm diagnosed with undifferentiated connective tissue disease which includes lupus symptoms along with other illnesses!. You've got some serious symptoms there including having had a stroke that I feel you should have a Rheumatologists opinion on your health!. It's good your GP is testing your blood which should include ANA. If that is positive she should refer you to one. Even if it's not I still feel a Rheumy is needed as you can have sero negative lupus!. Hope that's helpful and good luck. Keep us posted. X

[Goldyukr in reply to misty14]

Thank you, misty14. I had what I thought was a good rheumatologist but then she got stuck on the idea of me having fibromyalgia and wouldn't listen to my other symptoms, etc. So I've been waiting for months to see a new one. I'm so thankful that in that time period I was able to get the other diagnoses (autonomic neuropathy, myopathy and muscle junction dysfunction). I go late next month to the new one and in the meantime my GP is running bloodwork. My neurologist did actually say that my condition was similar to a connective tissue disease, but did not officially diagnose me as such. It's interesting you should say that. I just want to start to feel better - as do so many others. Since starting prednisone (10 mg) and tramadol, I do have more energy and I am thankful for that, but I worry about the long-term effects of being on prednisone for an extended time. Thank you for your input.

[misty14 in reply to Goldyukr]

Hi goldy

Good luck for your blood results and seeing the new Rheumatologist. Hope you get a good treatment plan and are more open-minded!.

I too am on daily prednisolone, stuck on 9mg at the mo and like you worry about the side effects. Are you taking daily calcium for your bones?. There are also bone strengthener tablets that are taken once a week that are prescribed if steroid use is more long term. Your Rheumey can advise. If we try to do all the right things we can minimise chances of having the side effects. If only they weren't so risky as they work very effectively. Keep us posted and take careX

[Hidden]

Hello,

It must be frustrating to be waiting for a clear diagnosis.

You might find our blog post on itchy rashes useful lupusuk.org.uk/coping-with-... . We also have a booklet about skin involvement in lupus which you can read and download from our website at lupusuk.org.uk/wp-content/u...

If lupus is a possible diagnosis, you might want to request our general information pack about the condition here lupusuk.org.uk/request-info...

I hope you are able to get a clear diagnosis from your medical team and the right medications soon.

[Goldyukr in reply to Hidden]

Thank you for those good references.