Hi I have just been prescribed plaque... - Scleroderma & Ray...
Hi I have just been prescribed plaquenil 200mg hydroxychloroquine sulphate. Having read side effects and poss eye probs I am apprehensive?
I have been taking plaquenil for 18 months and so far eyes are OK. Both immunologist who prescribed it and the ophthalmologist said they think the risk is rather overstated. It has helped my aches and pains. Good luck. willybilly
Hi willybilly,
I agree with the doctor and the ophthalmologist. A great deal of cautions found on the leaflets that come with the medications are very rare, but I think for legal reasons has to be mentioned.
Continue to monitor the effects of the medication you were given and report back to your doctor of any negative change no matter how slight. If you still feel unsure about this medication speak with both medics again.
Good luck!
Thank you both I suppose they have to cover any possible side effects because of the legal ramifications. As I suffer from sjorgrens I suppose I am extra careful with respect to my eyes but I will give these tablets a go nothing ventured as they say.
Hi Newbie
I was prescribed Plaqueil for Sjogren's Syndrome. I was told it was safe and that in 5 years of research there hadn't been any reported cases of macular problems. After 18 months of taking the lowest dose every other day, I noticed a small dark circular blob in the centre of my vision in my right eye. As I have high eye pressures I thought It may be that I was developing glaucoma.
It just so happened that I was due for my yearly appointment with my ophthalmologist at around the same time that I became aware of this blob. He took one look at the back of my eye and told me to stop taking Plaquenil immediately. He called a colleague into the room to show here what he described as red spots on the back of the eye.
He arranged for all sorts of tests but it took two months for the appointments to come through and by that time the 'blob' had thankfully disappeared. When I spoke to the ophthalmologist, he said I had been very lucky that there was now no sign of the damage on the back of my eye. He said that this is very unusual as, in spite of stopping the Plaquenil, the damage usually will continue and is irreversible.
I have been very lucky. All the rheumatologists had said that this is extremely rare but that is absolutely no consolation if it happens to you.
When I came off Plaquenil, I went to my optician who also saw this red pattern on the back of the eye. I was so worried about losing my central vision I went onto the RNIB sight and read about a product called Macushield. Although they don't endorse it, it is a supplement that is meant to protect the macula and I always wondered if it was this product that enabled the eye to heal.
I know many people take Plaquenil and have no problem with it. If you decide to take it, I would be extremely vigilant. Educate yourself about the possible symptoms. I only noticed this blob in my vision (it was not a floater - I do have those as well and they are nothing to do with Plaquenil) when I was reading black and white type. It was like a small fixed grey circle in my central vision and it was as if someone had put a small piece of tracing paper in front of my eye.
There are grids on the internet which you can print out and test your eyes regularly. You may not notice any changes unless you read a lot, or print out the grid and test your eyes. I would certainly get you eyes checked regularly by an optician or ophthalmologist and tell them specifically to look for Plaquenil related retinopathy. Mine would never have found it had I not mentioned this 'blob'. You need to make sure they do a thorough check.
I'm sorry to sound alarmist as I know lots of people take it with no problems but I do wish I'd educated myself about the potential dangers. It was only that I was reassured that it was completely safe at the small dose I was on that I didn't think that there would be any problems.
All the best with whatever you decide.
Thank you KJay for taking the time to send such a thorough explanation and as you quite rightly say some people have no problems but not much consolation if you are one of the unfortunate ones. At the moment I am coping with the fatigue and general aches I am on naproxen which I think helps quite a lot so until it is really interfering with my quality of life I think I will tread with caution and stay as I am. Do hope you keep well.
When I took this I had eye tests every 6 months, it is often prescribed for chronic urticaria and other people I know who take this also have the 6 monthly tests too. Talk to your optician to see if you can set this up and explain the reasons why. x
Sounds like a sensible option I guess you have to weight things up yourself and be guided by the experts.
I have been on Plaquenil 400mg for @ 10 years and have had no problems. If you start having problems with colors or your peripheral vision you stop taking it. Get your eyes checked every six months or so to avoid problems. Good luck to you.
Thank you for advice
Hi Newbie
Can I just reiterate that Plaquenil affected my central vision not my peripheral vision and I only noticed the blob when I was reading. I would not have been aware of it otherwise. I am so grateful that I was so very lucky that I recovered from the effects.
I have copied and pasted this extract from an optometry article on the internet that describes exactly my experience.
'The associated classic retinal toxicity is described as a bull’s eye maculopathy (ring of depigmented retinal pigment epithelium that spares the foveal area). Initially, central visual acuity may be unaffected, but the patient may notice related paracentral scotomas that often interfere with reading. Eventually, the scotomas will involve the fovea, resulting in deterioration of central vision.
Vision loss typically is permanent, with little significant improvement, and may continue to progress even years after drug cessation. '
revoptom.com/content/c/27904/?
I know some people are fine on it but I experienced little benefit - only the down side!
All the best with whatever you decide and hopefully you will not have to resort to Plaquenil.
x
Thanks again for sending this link it was very thoughtful of you. As I am on so many drugs as it is, unless I really feel the need my gut instinct is to stay as I am. All the best.
Hi
I am not on Palquenil but because Raynaud's on it's own can damage your eye sight, my optician always spends time making sure I'm ok and giving plenty of time for questions.
Because I am of a certain age I was asking him about Macular degeneration only last week. We discussed using the dietary suppliment Lutein. He advised that if there is a family history of macular degeneration (esp if it iwas your mother, grandmother, aunt) or if you are at high risk due to other circumstances (such as exposure to sunlight, or medication) then it is a good suppliment to take. We do get lutein in a normal varied diet, but if there is a risk then it is worth supllimenting it. Based on the answers given by the other members who have responded to you, I think it would be worth discussing this with your optician or even just taking it.
I buy mine from Health Span who are good at listing ingredients, allergy advise, etc.:
If you type lutein into the search box you get a list of the various tablets with lutein that they sell.
Take care of yourself, N
Thanks frillyhilly useful to know I did not appreciate that raynauds could affect your eyesight, appreciate you taking the time to reply. Good luck to you.
I have been using Plaquenil 200mg BID for over 7 years for Lupus, Scleroderma and Sjogrens. I have recently been taking Sildenafil Citrate for PAH and fingertip ulcers which can have a detrimental effect on the eyes also. I haven't had a problem with either of them yet. I my case, I think the benefits outweigh the risks. The upside? Your chances of getting malaria are nil to none :). However, I do get my eyes checked thoroughly twice a year by an Optometrist.
Like others I have been taking plaquenil for many years and all I can say is that it has been successful at keeping my aches and pains at bay- prior to taking it i was crippled
I suffer from mixed connective tissue disorder including raynauds
Regarding eyes - as a contact lens wearer I get regular very thorough eye checks.
