skin flare ups SLE

[NY22]

Hi Everyone,

I have been on HCQS 300 for 2.5 years now but that has not stopped flare ups including red rashes on my face , mouth ulcers on the roof of mouth and hand rashes ( Raynaud’s). On the other side, it has led to hyper photosensitivity, blurry eyes etc .Recently my Rheumatologist said I could try stopping HCQs a was 2-3 weeks and see. Along side he said I should start tab mycophenolate mofetil 500mg ( immuno supppresant drug). Has anyone got experience of this drug? While I have stopped HCQS , my face rashes have increased and I am yet to start the above drug .. any advice / experience will help. Many thanks

[Spanielmadlady]

Hi NY22. I've been taking MMF for 5 years now. Experienced the usual side effects for about the first 4-6 wks .bloods are usually monthly. I don't suffer much with skin rashes so can't comment but are you using factor 50? My sle affects my lungs and kidneys but I had 3 stable years until Nov 21 when my lungs flared. Last year was also a.lung flare year but that was due to stress following the decline and subsequent loss of my mum .You have to very careful whilst on mmf. Avoiding people with any bugs. I keep.my distance from as many people as possible ( I don't go.into busy places like restaurants, supermarkets, cinemas etc especially this time of year) and don't hug or kiss anyone not even my own (primary school age so germ factory) grandchildren . Wounds can go septic very quickly too. Antibiotics are essential ASAP if you start with anything .it also complicates some things too.I'm currently off mmf for 6 wks due to having an operation in the new year.

Like many Lupus drugs it takes along time to work but all you can do is try.on the whole it has worked well for me.

I am only recounting my experiences and advice given to.me by my rheumy so other responses my differ.

I wish you a merry Christmas. SML X

[NY22 in reply to Spanielmadlady]

Thank you SML. Very merry Xmas to you and your loved ones. Your detailed message is very helpful in deciding whether I should start the intense treatment with MMF. Thank you and God bless! Hope your operation goes well.

[mitty]

Hi ny22,I was on hydroxychlourine 200mg for about 10 years then started to feel unwell again. I was hospitalised for a week with pneumonia. My rheumatologist decided to change meds. I was on 750mg of mycophenolate a day which was doubled but didn't really help even when combined with steriods. Eventually put on rutiximub which worked really well. Still on mycophenolate too. Rheumatologist didn't want to depend on one med. All going well now apart from dry skin on face and dry gritty eyes. Which I can live with. Hope all works out for you.

Good luck

Mitty

[Lizzo32]

Hi there,

Note that MMF is usually a long term medication unless your lupus is in remission. It’s a very powerful immunosuppressant drug, ( 5’ inosine monophospate dehydrogenase inhibitor of T lymphocytes). This results in lymphocyte (white blood cell) depletion and lowered production.

Hence shielding from all sorts of bugs is most important as SML explains ☝️👍👏.

For lupus nephritis it’s usually the drug of choice because it works! Unless one opts for a monoclonal antibody infusion treatment. This can be problematic and usually involves 2-3hourly stays in outpatients strapped to an iv drip machine.🙄

My MMF dosage has varied from 3000mg/day to presently 2000mg/day! Unfortunately gastrointestinal side effects are very common with MMF eg wind, indigestion, bloating, stomach churning, 🥹noises etc.

My kidney function is good now (lupus nephritis in remission?) but sadly skin lupus has flared, SCLE!😱

Rashes will not go away!☝️😱

BTW MMF dosage of 500mg/day is unusually low?🤔