Red hot face. Sometimes it's puffy and looks swollen. Really getting me down.

[Giggle]

Hi I don't tend to write on here except when I have a question. I started rituximab Oct this year after other meds didn't help. To be honest so far I feel as if its been just one side effect after another. Migraines,stomach cramps, nausea, diarrhoea, but worse of all I think is this red puffy face. My face looks slightly swollen and puffy and it goes red frequently. I'd had occasional flushing before the rituximab but nothing like this. Sometimes my face gets so hot it stings my eyes. When it gets that hot it makes me feel really panicky. It's really starting to get me down. I was concerned it might be an allergy so I no longer wash my face with soap use face cream or wear makeup. I went to the gp who at first seemed interested in helping asking me to take photos on my phone and go back to see him. Which I did but then when I asked if it might be related to the secondary sjorgens he went yes it must be contact the rheumatology team. But take these steriods for a week whilst you're waiting to hear back from them. This is something that I feel happens a lot I get fobbed off to someone else. So I rang the biological nurse who initially stated she thought it was the steriods. I explained I've had steriod infusions and oral steriods before and never experienced these problems. I was taking oral steriods for 18 months after I was initially diagnosed. She then went to speak to the other biological nurse and came back on the phone saying she doesn't seem to think its down to the rituximab. But it could be the sjorgens and I said we'll what am I supposed to do? No answer except she'd speak to my consultant and contact me back. Nearly 2 weeks ago now. I feel so self conscious and it's making me feel down as well. I also have an under active thyroid I'm on 300mcg of thyroxine. I feel like no one listens I'm fed up with eing fobbed off by professionals. Any help would be appreciated.

[earthwitch]

Google "rosacea" or "acne rosacea" and see what that looks like. There are various ways it manifests - sometimes looking very much like a lupus face rash, and in some folk it can be quite lumpy and bumpy. Definitely feels hot when it flares up, and can flare with a whole lot of different triggers, with alcohol, stress,and sun being common ones. Rosacea can also affect your eyes, so that could fit with the eyes stinging as well, though a lot of autoimmune disorders have eye problems associated.

The other thing to be concerned about would be drug induced lupus, that can be a rare side effect of the biologics. I'd definitely see if I could get a photo sent to the rheumatologist for them to look at. Ask the rheumy nurse too if thats even a vague possibility - if she thinks it is, then she could ask your GP to do blood tests to check.

I really can't see how its related to sjogrens though - I've never heard of that kind of effect from that.

[Giggle]

Hi earthwitch thanks for your reply. The gp initially thought it could be rosacea that's why I had to take the photos back to him. But he didn't seem to think it was that after looking at them. I'd not heard of anything like this being related to sjorgens either. The rheumy nurse said she'd ring me back two weeks ago and didn't. It feels like I'm just being fobbed off. i feel like utter cr*p which makes it worse especially as its nearly christmas. I have two young boys at home. I'll have to ring the nurse back again. when they don't contact back when they say they will it makes me feel like a pest :0/. Sorry for the moan xxxx

[Hidden]

I used to get allergic reactions to lots of things - often never found out what to but you have my heartfelt sympathy - I hated it when my face would swell up more than anything (yes even more than RA). Poor you - do pester that rheumy nurse for an answer. It does sound like a reaction to something and she should have got back to you by now. We are told to report these kind of things and then when we do they fail us by doing not replying? Tilda xx

[earthwitch]

Nuisance when they don't return your calls. Can you find an email address for the rheumatologist? Even for the Rheumatology secretary would do. Then email the photo to them and ask for advice. If you can't find any other email address, you can just use the general hospital enquiries contact details, and just put in the subject line "please forward to Dr...."

[Giggle]

Hi @TildaT thanks I was worried too it was an allergy because I've had allergies before too. I asked the gp if he thought it was and he said no?! Which to be honest didn't put my mind at rest because at least then I would have known what it was. I've left another message for the rheumy nurse to rung me back I think they break up for Christmas tomorrow so I'm not sure if ill hear back until after Christmas. Thanks for your reply it really is appreciated xxx

[Giggle]

Hi earthwitch yes I think I might have an email address for one of the nurses. I shall try to email a picture later and hopefully I'll get an answer. I think if I had an answer for what it was then I could at least try and deal,with it. Thanks again for your help xx

[earthwitch]

If there is any question that it might be rosacea, then ask to see a dermatologist for confirmation - they are the experts on that, not rheumatologists or GPs. I ended up seeing dermatologists every couple of months for nearly a year while they tried to figure out my red face, initially thinking it was lupus, but becoming clear that it was actually rosacea in the end - though it did take several visits and seeing it over time, plus a biopsy (not from my face - from my arm, to check for lupus) to prove it.

And it still flares nicely when I am stressed, when I eat certain foods, when I spend too much time in the sun, or when I drink alcohol.

[Giggle]

Hi earthwitch and TildaT I finally had a call back today after my husband rang again today. Bless him I can see how much it worries him when I'm upset and not feeling well. Anyway after initially saying it was definitely not the rituximab she said it possibly could be a rare side effect. Apparently with biologics the consultant said there is a chance that it can cause swelling in the salivary glands in your face which could explain the redness and swelling. Anyway they're trying to arrange an appointment for me to go and see them the end of next week. Hopefully now things will start to get sorted out. I at least feel they are taking it seriously now. Thank you again. I hope you both have a lovely Christmas xxx

[Hobbles]

I get this ALOT.

It's embarrassing isn't it! My skin is so red hot that it burns, puffy and sore to the touch. They thought it was lupus at one point as it was over cheeks ( face not bottom ). I had lots of investigation and in the end they put it down to reaction to the high levels of inflammation and steroids. I wasn't convinced about the inflammation theory and this turned out tobe right when my levels dropped my on off red face continued. In the end it was the steroids as for me it's how I react to higher levels of steroids even if its given orally, infusion or injection. Interestingly I had my first infusion of rituximab in October and although my face went bright red having the steroid infusion it faded once they stopped it and started the big infusion. Also Interestingly although I occasionally get my red face, it's settled down for me

I hope you get some relief soon. Good luck.