The docs believe that the treatment was affecting my eyes but i know its the steroids that have done that as my eyes have gt worse since my steroid dose was increased.Am unsure 2 what they will do next
Am having a major flare as i had 2 stop taking Hy... - LUPUS UK
Am having a major flare as i had 2 stop taking Hydroxachloriquine a few months ago & nothing is helping?
Anti-malarials can affect eyes quite badly Lisa, as can steroids in some cases, but more usually only at high, prolonged doses. I would make an appointment to see an Optician a.s.a.p. and have your eyes thoroughly checked. Good luck and please let us know the outcome!
Ask about Mepacrine ( US Quinacrine another antimalarial that can substitute for HCQ. It doesn't damage the eyes. It has to be compounded ( made into pills for human use) by a compounding pharmacy in US or hospital pharmacy or Boots in the UK.
Note: permanent eye damage from Plaquenil is very rare if proper checks are carried out and correctly dosed.
Otherwise the steroid sparing meds such as methotrexate, azathioprine/Imuran or Cellcept might be used to reduce reliance on Prednisone.
Good Luck
Hermione
I find I have good eye days and bad eye days....have had them checked and nothing was found. I also take steroids and hydroxychloroquine. I have had my sight go completely in the night for seconds then a bit of light appears and slowly my sight returns. It is very odd and I have never got to the bottom of it. I have carried on with both of these drugs. Good luck x
Loopy-loo, if you lose your eyesight completely, did you check the brain/have MRI? Just to be on the safe side perhaps, it does sound strange what you're experiencing.
Thank you for this suggestion..no one has suggested it! I am waiting to see a new rheumi and this is one of several points on my list. I have only had it once recently and previously about 18 months ago several times. One of the many reasons for changing to a new rheumi....perhaps they will listen!
I was on azathioprine for many years and ended up with a Primary CNS Tumour mass on the brain which can affect the eyes if tumour reaches a certain size. Have you been having headaches? If so, I would suggest MRI of the head if possible. Azathioprine can aid the growth of certain cancers.
Thank you for this information. You sound like you had a dreadful time. No, I have not been getting headaches. I seem to get a lot of weird things with lupus though. If it happens again I will go to my GP immediately. I will mention it to my new rheumy though. Keep well.