Mycophenolate and eyes

[Bluemoon110]

I have eyes feeling heavy and sore but not dry. I was on 400 mgs of Hydroxychloroquine ina divested BD but trainee GP in April suggested my Rheumatologist half dose which he did! This made a great improvement overall but wish I could stop one of other of these meds as I feel they make me tired after I take them in the morning. I have trialled different times to take them which has helped over time.

[Lizzo32]

Hi,

Be careful the tiredness/fatigue could be due to the lupus itself rather than the meds?

Lupus must be managed with the optimal dosage. This will vary from individual to individual!👆

Check with the consultant rather than the junior medic. Important.

[Bluemoon110 in reply to Lizzo32]

Lizzie

It was the consultant who reduced my dose Hydroxychloroquine as per BNF prescribing a dose per body weight. I never world self medicate or make changes without consultant involvement.

However I did have an OCT scan and eye tests on advice of junior dr which was fortuitous as my eyes has deteriorated and I needed new prescription of my 6 month old glasses. Expensive! I never wore glasses before 2023. It’s still all overwhelming.

[StriatedCaracara in reply to Bluemoon110]

Hydroxychloroquine retinopathy is a very specific condition. There are many, many other reasons for eyesight to change.

If they did not diagnose Hydroxychloroquine retinopathy, then lose of eyesight is likely due to something else.

My eyesight changed, and I first wore glasses due to starting a job where I always used a computer. Now I have retired, and am not using a PC all the time, my distance vision has improved again. Which is lovely. Trees and scenery are in focus once more.

This just provides one example of the many, many things affecting eyesight. Another is Lupus itself causing inflammation.

If my potassium levels change it can also affect my eyes ability to focus and has resulted in prescription changes. So checking bloods is important too.

The post below has some good videos explaining the different drugs and their side effects etc.

My rheumy uses a combo of hydroxychloroquine and another antimalarial mepacrine. The two can work well as a combination. This has helped get rid of fatigue which had, for me, already started to improve on hydroxychloroquine.

Hope this helps.

healthunlocked.com/lupusuk/...

[Milkybarkid in reply to StriatedCaracara]

I've been on Hydroxi for a few years now but only for three mornings a week. I was told that they have found that a regular small dose seems to keeps things ticking over with no problems and so far they've been right. I was on four during Covid and my hair started falling out, that's when they reduced to three, although probably an age factor came into play as I'm 78. My hair is not as thick as it used to be but that's life.