Am having a major flare as i had 2 stop taking Hy... - LUPUS UK

LUPUS UK

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Am having a major flare as i had 2 stop taking Hydroxachloriquine a few months ago & nothing is helping?

Lisa78 profile image
8 Replies

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

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Lisa78
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8 Replies
Tigerlily4 profile image
Tigerlily4

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!

Lisa78 profile image
Lisa78 in reply to Tigerlily4

I'm seeing a eye specialist and am due 2 see him in Jan to see if stopping the Plaquinel helped but i find it has'nt.Ty

HermioneG profile image
HermioneG

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

loopy-lou profile image
loopy-lou

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

Purpletop profile image
Purpletop in reply to loopy-lou

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.

loopy-lou profile image
loopy-lou in reply to Purpletop

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!

sassylisa profile image
sassylisa in reply to loopy-lou

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.

loopy-lou profile image
loopy-lou

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.

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