Mychrophenlate

Hi All

Just a question about this drug. Ive been on iy for 5 weeks. One of my soecialist says its kicked in reason for this is my bloods are back to normal and the other says it takes 3 months...which do i believe?

When i take my meds so im on 1500 of Mychro and 20mg of sted my eyes tend to blur more so have to wear glasses throughout the day. Also i feel wavy like im swaying has anyone felt this?

While been in hopsital in april when i got diagnosed i lost a patch of hair this is growing back does this mean its working?

Ive always to to my specialist i swear meds make.you feel worse but he keeps saying itl get better your on week 5 stop being impatient.

Also does anyone get titinitus does this improve over time?

Sorry for the questions ❤

[miccika1]

Its very individual. Could be both.

[Jmiller623]

This is interesting. I couldn’t tolerate mycophenolate. It made my blood pressure go through the roof and my vision was sooooooooo blurry. I think I might of stopped Plaquenil around that time too so I was flaring bad. Could’ve all been lupus. I also started getting a sore throat and bad nose ulcers while on mycophenolate. Went off for a little and rechallenged. Same ulcers came back but no BP problems.

Who the heck knows with lupus. I agree with miccika1 . Could be meds. Could be lupus and sometimes it’s hard to tell the difference unless you stop the med which no doc likes to do when things are going well.

FYI I have NPSLE and my vision is shite because I have cranial nerve neuropathy. Make sure you see a neuro-optho about your vision. It could be caused by so many things. Tinnitus can be part of this.

[Hidden in reply to Jmiller623]

Yeah also have weakness in hands ansld sometimes arms .....its weird beacuse when i was high does i didnt have any of this. But this comes and goes

Ive been eye hospital and i have white clouds in my eyes which are settling. My specialist said its the steriods causing the blurred vision.

Wondering if anyone else get arm legs weakness with lupus or if its the steds that ate making me like this.

[Jmiller623 in reply to Hidden]

I did. My right arm and hand muscles started atrophying. Still no idea what caused this. Had CT scans out the wazoo. EMG always negative. Happened around the same time all the other stuff did.

[Hidden in reply to Jmiller623]

I think ive had EMG they did all this back in april in the hosiptal but didnt ever get the report i asked my specialist and shes chasing it but she said if it was a concern they would of had it by now.

Im tapering down my steriods in the 3 weeks from 20mg to 15mg then to 12mg so il monitor it and if i still feel the same il mention it on mext appointment.

I just thought it was usual aches from lupus.