Medication

[Liz2304]

Is anyone on here on Mycophenolate , this is the new meds they want to start me on to try and get things under control, awaiting my test results from bloods to see if my body is suitable?

[Spanielmadlady]

Hi liz...yes I've been on mmf for 5 years now x

[Liz2304 in reply to Spanielmadlady]

Thank you for your reply, has it seamed to help you ?

[Spanielmadlady in reply to Liz2304]

My Lupus affects my lungs and kidneys. Before mmf I'd had 6 hospital admissions in 5 yrs .I then I had 3 stable years with nothing until 2021 when my lungs flared and I ended up.in hospital. I had a very stressful spell in 2023 as I lost my mum so again things went abit haywire for a time. Before mmf I'd been on azathioprine but that didn't work for me and made me very poorly as I developed drug induced hepatitis.

There are quite a few of us on here on it. You've just got to try the drugs until they find the one that works for you. they all come with some unpleasant side effects for the first few weeks but if you can ride them out then it might be the drug that helps you x

[ClassicVintage]

Hi Liz, Lupus has affected my lungs. I was put in Mycophenolate January 2015 and am still taking it. It took a couple of months to start taking effect. I had no side effects. My lungs stabilised both in terms of function and structure. My fingers remain firmly crossed that it continues but who can tell … Wishing you all the best.

[Redwine53]

hi Liz, I have been on mycophenolate for five years now, after azatheoprine made me feel so ill .

I am on 2g of mycophenolate daily, 2 500mg pills in the morning and 2 at night. You start taking these pills gradually, and when I was on 2 pills a day I got a rash on my stomach, which wasn’t itchy and faded away gradually. I found for a while that cow’s milk made me feel nauseous, but I am fine with it now.

These pills work for me, but everyone is different, I hope they work for you, it takes about 3 to 4 months to see their affect. I am also on hydroxychloquine and tapering prednisolone. I have lupus, scelerderma and myositis.

Good luck with your drug journey.

[Jrob14]

hi my husband started on this 23.12.24 due to having mixed CTD-diagnosed in December. So only been taking it for 2wks, no side effects as yet n told would take 3-4mths to work. He’s only previously taken prednisone (which he’s still on now 20mg) also just starter hydroxychloquine on 3.1.15. Fingers crossed it helps his symptoms which are many.

[Bee_E]

Hi Liz

I was diagnosed with SLE in January 2015; it had affected my lungs. I was prescribed Mycophenolate and Hydroxychloroquine immediately and still take them (amongst other things) today. I have had no side effects and they have stabilised the damage to my lungs. The only downside is a immunosuppression which means that colds etc. take longer to go away.

Good luck xx

[NY22]

Hi Liz,

My lupus affects my skin - painful rashes on hands, scalp and mouth ulcers. I’ve been on HCQS 300 mg for 3 years now but rashes have not receded. My Rheumatologist has just put me on MMF and I’m yet to start . I am still wondering if it will help with rashes or will it just suppress my immune system heavily and cause collateral issues. Still want to be convinced before I start. Any believers of MMF related to skin lupus here?

Thanks and a very Happy New Year everyone.

[Liz2304]

Thank you everyone for your positive feedback means so much to get this ❤️