change of meds

[mitty]

Been having a bad year. Ive been unwell since July and was eventually hospitalised with double pneumonia in September. My rheumatologist treated me for a lupus flare as I had been in a similar situation years previous when first diagnosed with lupus. The dose of steroids did the trick and I was sent home after a week in hospital. I was on hydroxychloroquine for lupus for ten years or so but because I have been so unwell he has decided to change my medication to Mycophenolate. At present Iam taking both as Iam weened off the steroids. I would like to know if anyone has had any issues with Mycophenolate. Thankfully Ive been ok so far.

many thanks

Mitty

[Lupiknits]

I have systemic sclerosis, and take mycophenolate together with hydroxy. Adding mycophenolate has been helping a great deal. I have had no problems or reactions to it at all.

I hope things go well for you

[Fiona30ni]

Hi Mitty I have been on this medication for a lot of years. The only problem I have is low white cells

[Marlena84]

I am on mycophenolate for years now. Dose is really low at the moment, planing to drop it completely in next couple of months. At first with very high dose (2x500 twice a day) I didn't feel to well( but it was also after 8 doses of chemo) but after a while my body got use to it and it really helped me. I am also on hydroxychloroquine. No steroids. I am hoping you will feel better soon as I know it is possible! You've got this!

[Hallshouse]

Hi. I was on hydroxychloroquine for 10 years and my doctor changed me to mycophenolate about 3 years ago. I havent had an problems. Hope all goes well.

[doggit]

Doggit here. The most helpful med for me has been Fexofenadine as it has been the only way I could get off steroids. It really is worth a try. Good luck.

[Fluffymermaid]

Hi Mitty, I have been on Hydroxy, Mycophenolate & steroids for the last 4 years. Doses are currently being changed because, like Fiona30ni my white cell count is low, but I was taking 5 x 500g per day of Mycophenolate, 200mg hydroxy and 5mg steroids for Lupus until 10months ago without any other side effects. That said, it would be nice not to have to take any meds but better than feeling the way I did 4 years ago 😊. Hope you get on well with all the meds🤞.