Rash and dermatology

[RosieA]

As some of you may remember I have become photosensitive, with rash just on cheeks (and yes, sparing nasolabial fold), even on very overcast days. This has now happened three times. I sent a series of mug shots to the Consultant. These are now winging their way to dermatology for their opinion. Has anyone else had this sort of referral - am hoping that they can tell just with photos - would so love to know what's occuring- the not knowing is quite frankly wearing me down. Well that and tapering steriods!! x

[Blackwitch]

Hi RosieA. I’ve no experience of this but just want to wish you luck. I’m afraid we all have to be patient as everything seems to take so long & trying to speak to a proper person is nigh on impossible. I tried an e-consult the other day & it took me 4 goes before it said my own GP would ring me. I only wanted advice on meds & was told:

1) ring 999

2) ring 111

3) go to your nearest walk-in centre.

The 4th time I just lied my way through until it said my GP would ring me. He rang 2 days later. I wish you all the best. Nic 🙂

[RosieA in reply to Blackwitch]

Gosh Nic. Dreadful that you have to go through all that just to get them to speak to you. I am lucky in that the Rhuemy team and GP have been exceptional. I'm just a year down the road from the initial consultation and know that AI diseases can take quite a while to fully reveal themselves. Initially I was referred with joint pains in hands and fatique but since then I have become ANA+ve, developed Sicca symptoms and initermittently lymph node come up in my neck and now photosensitive. Just wanting that 'OK, so this is what it is' ... so that I can fully come to terms with it and move on moment. Fingers crossed eh! x

[Blackwitch in reply to RosieA]

I know the feeling. What I didn’t say was that the process above took about 3 hours. It really was a joke. 😂

[Fruitandnutcase]

It might be ok. I sent photos of my hand to a physiotherapist (I developed CRPS after a broken wrist) and she said they were very helpful. I’ve since had two video consultations plus follow up physio exercises and lots of advice from her.

I think sending photos of your rash has to be better than a friend of ours - he said he had a rash and could only get an online consultation with his doctor - I asked if he had sent photographs of it to his doctor and he said no, that his doctor had sent him several photos of rashes and told him to choose the one most like his own! What can you say to that?

Good luck with it. Hopefully you will be able to follow up with a video consultation soon.

[Blackwitch in reply to Fruitandnutcase]

That’s like being asked to poke yourself in the eye & ask how it felt on a scale of 0-10! Nic x

[Fruitandnutcase in reply to Blackwitch]

😂🤣😂🤣 exactly.

[RosieA in reply to Fruitandnutcase]

That made me chuckle - probably shouldn't but...

[bubblyalex]

Hi RosieA it is amazing how much they can do with photos. I hope there is a quick answer or that they can organise looking at it to get it sorted out.

I know the push is to taper steroids especially with covid but my GP and nurses have all said that it isn’t safe for me to do at the moment. They need to see the flare/DMARDS working before this might be tried again. If tapering is making it harder for you, I would question them about this being not helpful? Things are hard enough with that burden? 🤗

[RosieA in reply to bubblyalex]

Yes, thank you for that. I am hoping that they can tell if it looks like a HYD reaction or an AI symptom.

You have prompted me to contact the specialist nurses. I think I have got as low as I can with the steroids as the fatique and joint discomfort are rearing their heads. Spent part of last few days with head embedded in tissue box again. So as you say, things are hard enough. Just some concern about my already low bone density but I have just started bisphosphonate treatment so that should sort that one out. What a to do. x

[bubblyalex in reply to RosieA]

It isn’t easy is it. 🤗 I hope they have answers for you. Let us know 😊

[oldtimer]

I have had referral to a dermatologist and a photograph taken of the lesion sent to the specialist. She then had to see me to take a biopsy as it was 'atypical' (i.e. I don't know what it is). It took about four months to be seen (I'm sorry to say) but that was pre-Covid 19.

[AgedCrone in reply to oldtimer]

A couple of years ago I had the most horrendous rash..it didn’t hurt, & it didn’t itch ...it was all over my torso & arms & I had to cover up or I would have cleared a room in seconds as it looked so awful.

I had 4 different biopsies & it turned out to be only a post viral rash from the Flu I‘d had three months earlier.

It still appears now & again in a sort of paler copy of the original.....but it’s not a problem ...Dermatologist says it is very common....so don’t worry...if you Google “skin rashes” you will see so many really awful rashes ..you will probably be relieved yours isn’t pictured.

[RosieA in reply to AgedCrone]

Thank you. Yes, I've had post viral rashes and they can be quite concerning initially. I sent my photos to Rhuemy Consultant only a couple of weeks ago and luckily I have just heard from dermatology. I have a telephone appointment next week, very quick indeed. My 'rash' has only been on my cheeks, same place each time. It comes out about 9 hours after being outside (even on a rainy day - had sun factor hat on but didn't think I'd need the sun cream as well - how daft am I!) I think the concern lies in that my AI disease is showing some different facets and this may be another part of the jigsaw. Let's just hope it hasn't got 5000 pieces!!!!

[RosieA]

Thanks oldtimer - better get the knitting out then! Patience has never been a virtue but obviously one I need to start nuturing.

[Hidden]

I have photosensitive skin and have had drug induced lupus. Dermatology were not sure if my rash was lupus or rosacea. They treated for rosacea and it dampened down so we knew.

Then I developed a crusty rash on my eyes and nose. Was referred back to same dermatologist in December. I'm still waiting.

The gp thinks the rash is Seboreic Excema but the treatment (antifungal steroid cream) is contraindicated with rosacea. It's itchy and sore. I removed dairy from my diet to see if that helped but no improvement.

I hope you get to the bottom of it all.

[RosieA]

Gosh! Do you still have the rash? Is is worth a phone call to give Dermatology a nudge, perhaps with all that has gone on you have slipped through the net!

My rash is reduced to a very gentle blush overnight and after 24 hours has gone. The only added concern is three small round areas that became red, scaly and once that had gone the pigment had changed so now look like faded freckles. One was in my scalp. Very hard to capture with a photograph but we'll have a go. Have phone appointment with dermatolgy next week so hopefully will be a little better informed then. Have you always had photosensitve skin may I ask or did it develop with your AI disease? x

[Hidden in reply to RosieA]

Yes quite possible my referral has gone astray.

The photosensitivity in me started way back when I started Cyclosporin (an old immunosuppressant not used anymore).

A friend was on it after a kidney transplant and told to wear sunblock.

I went on it and rheumy didn't mention it at all.

We are more at risk of skin cancer because our immune system is dampened.