Need some management advice on SCLE plz ... are u susceptible to infections quite often ???

[Multiseed]

Need some management advice on SCLE plz ... are u susceptible to infections quite often ?

[MusicalFurbaby]

Hi Multiseed…oh yes! I catch every bug that is going around: colds, flus, gastro, the lot. Thankfully I’ve only had COVID-19 once, though.

I didn’t use to be so bad but about 2 years ago I had a super-bad flare which rendered me disabled by breathlessness. I was off work for 6 months. During that time I caught a fresh cold/flu virtually every week and since then I have remained at a heightened level of being immunocompromised.

I manage it by masking everywhere I go, testing if I develop symptoms, staying in touch with my doctors if I get breathless again, and definitely staying home when sick. Of course, I still get sick, as no one else is currently masking, but it’s better than if I was doing nothing at all! All the best to you, and I hope things improve for you soon. 🌻🌈

[Multiseed in reply to MusicalFurbaby]

Hello Thank you for your reply very much appreciated. Do you have SCLE?? What precautions do u take when u are in sun than than using wide brim hat, spf 50... I was diagnosed in 2023 SCLE so still hibernating... I don't like this overprecaution but I feel since diagnosed I am a different person... 2 many dos and donts... any tips or experiences u can share may be... I am having bad flu never had before ... Will start wearing mask now... 😷 Thank you once again for taking time out to answer Have a blessed day

[MusicalFurbaby in reply to Multiseed]

Yes, I’ve been diagnosed with SLE, but I don’t tend to react to the sunlight, which is a bit odd because most lupies do. My sensitivity is to heat, either indoors or outdoors. I can become quite unwell quite quickly. I don’t spend a lot of time outdoors anyway, I lead a sedentary lifestyle, so I also take Vit D to compensate.

Life can start to revolve around the precautions, so I think you have to find your own balance. Do what works for you—sometimes you won’t know what that is until you do a bit of trial and error. Lupus affects us all differently. I can work part-time, whereas others work full-time, and still others can’t work at all. I can’t stand for very long, and definitely can’t squat anymore, whereas others can. Your body will tell you when you’ve done too much! All the best 🌻🌈

[Multiseed in reply to MusicalFurbaby]

Thank you for your valuable and motivating response. Stayblessed

[Hamptons]

I used to get lots of infections but now this is less. Even working in a school environment I was often the last one to get things. I think this is the HQC. However, when I get something I get it badly and it can take longer to clear. It has been cyclical, at one time I would get every cold/throat bug but not the stomach bugs. Then as I started to get gastritis from medication I was susceptible to all the stomach bugs but less likely to get the cold and flus. I still use a mask in crowded places and carry antibacterial gel. I am very aware of people who are coughing and sneezing and try to move away. I have had the flu jab the last few years which I think has helped immensely to reduce the impact of bugs.

You will find that it will take longer for bruises and cuts grazes to heal.

[Multiseed in reply to Hamptons]

Thank you for your reply. I take on board all the suggestions. I completely believe with time things change and healing is much easier. I will take my precautions from now on. Have a blessed day ....

[Krazykat26]

Hi I have SCLE..diagnosed in 2017. At the time I was diagnosed I had severe ulceration on my feet and hands.Swabs taken from my feet showed that I had two infections in my feet so had antibiotics for that. I caught COVID from my husband in October 22 and I've recently had a UTI. Apart from that no I'm relatively healthy and even when family have had bugs I haven't picked it up. I do take precautions though n steer clear from anyone coughing or sneezing and my family know not to visit if they feel rough coz I'm now on immunosuppressants. I also take the flu jab every year as does husband as he's my carer too.

You asked above about sun protection. I wear a wide brimmed hat and cover up all year round. I can't wear sunscreen due to skin sensitivity so I wear rash vests and leggings under my normal clothes. Try to avoid going out between 11am-4pm when the UV is at its strongest. I also wear sunglasses as my eyes have become really sensitive to sunlight...and indoor flourescent lighting is the worst for me so be careful of flourescent lighting too. You may have to change lightbulbs at home..I have changed all my bulbs to warm white light rather than the harsher cold white bulbs which cause me to flare.

If you go to the lupus UK website and scroll down to Eclipse you feel discover some great info on photosensitivity. Also note that Hydroxychloroquine causes photosensitivity too so we do have to be very careful all year round. Overcast days can be just as hard to manage so cover up all year round if you're in the UK 🌈xx

[Multiseed in reply to Krazykat26]

Thank you for somuch information. This is very helpful !!! Thank you somuch. Can you plz ask you if you are using chemical dye on your hair?? If so any particular brand that u could recommend?? I stopped it 12 months back as my scalp was irritated now silver hair is shining ....lol just wanted to know if we can use a chemical dye on hair strands ???

[Krazykat26 in reply to Multiseed]

Sorry I can't help there. I don't colour my hair. You could post it as another question to get some advice from those that do 🌈xx

[Krazykat26 in reply to Krazykat26]

Ps I have silver hair too 😹

[Multiseed]

OK silver sisters then .. Can u not use it or u have chosen not to use the chemical dye?

[Krazykat26 in reply to Multiseed]

😹I like that!! 😹My skin is extremely sensitive I can't use any chemicals..even soap! I'm prescribed Dermol 500 lotion that I use as a soap substitute. I keep my hair really short n silver coz I'm always wearing a hat when I go out anyway. I lost a lot of hair when I was really ill and it drove me nuts so that's when I got it cut short..that way it's easily managed 🌈xx