taking hydroxychloroquine with a visual impairment

[AnimalLover115]

hello,

I recently started taking hydroxychloroquine about a month ago due to my joint pain. I am visually impaired and my rheumatologist educated me on the potential risk of retinal toxicity. In his opinion, the benefits out weigh the risks and since my vision is already poor, he figured that any vision loss may not make a huge difference for me…

however, I recently saw my Neuro ophthalmologist to get my eyes checked and he had a different opinion. He felt that I should stop taking hydroxychloroquine due to the risk of retinal toxicity. He was concerned that I won’t be able to notice any changes in my vision due to retinal toxicity, and therefore potential physical damage to my eyes Will be irreversible. I asked him if getting my eyes checked yearly could be an alternative to me self checking any progression, but he said that by the time they see this damage it’s too late. he was also concerned that I might be at a higher risk of retinal toxicity to begin with due to my visual impairment

my Neuro ophthalmologist wrote a letter to my rheumatologist explaining his concerns and I see my rheumatologist again in November. I’m not sure what my rheumatologist will say, but I personally want to see if this medication will improve my joint pain before I make a decision to stop it or not. In my opinion, if it makes a significant positive difference, then I am more willing to accept any risks. I’m not sure if anyone else has a visual impairment here, but I figured I would throw this out there .anyway

thanks for reading and take care

[Betty909090]

Hi AnimalLover115,

Thanks for posting!

There have already been a number of postings and useful discussions related to HCQ and retinal toxicity.

I have retinopathy plus the more serious maculopathy myself and have stopped HCQ totally for the last six months and have suffered no lupus flare ups!

In terms of “credibility” the advice given by your neuro ophthalmologist is better and more empathetic.

In my case my rheumatologist is relying on my dermatologist to give a yay OR nay!

I’m still waiting as no department wants to give me advice!👆😳

What is very concerning is that your rheumatologist seems to be uncaring about your vision?

Note that HCQ retinal toxicity is generally underestimated in us patients.

Your eyes are precious.

There may be much better meds for joint pain rather than the risk of suffering retinal toxicity.

For eyes I would trust your ophthalmologist not your rheumatologist 👆.

BTW self checking for retinopathy does not work!!

One needs an OCR plus experienced ophthalmologist to look at those retinal photos.

Regards.

[Purplebox]

Dear AnimalLover115,Greetings from the UK. I was sorry to read about your situation which must make life quite difficult. I was recently (after 4 long years) finally diagnosed with Lupus which explained the various things I have been experiencing. The joint pains I can fully understand can become intolerable and one does almost anything to be rid of them. Like you, my rheumatologist suggested I take Hydroxychloroquine but I have deferred at least for the time being due to the risks to my eyesight. Retinopathy is incurable and I sadly watched my late mother lose her sight completely due to this condition albeit she was diabetic, but nevertheless losing one's sight no matter how limited it may be, is utterly dreadful and changes everything. I have read different opinions on this drug and although I am no expert and certainly not wishing to be a scaremonger and speak out of turn, I have reached the conclusion that this particular drug affects each person taking it differently. If I were in your position and taking into account the opinion of your eye specialist - who I would trust completely in this situation, I would press your rheumatologist for an alternative which would not affect your precious remaining eyesight. Obviously all drugs have side effects and I am on several others so I appreciate the dilemma. This lupus is a horrid thing to have and makes life very challenging. Good luck and I will be thinking of you.

With best wishes.

[AnimalLover115 in reply to Purplebox]

Thank you for sharing your story and knowledge of how vision loss can impact a person's life. I really appreciate it. Take care.

[Paprika60]

I read your post with much interest. I have been taking Hydroxy for over 8 years and have been very concerned about my eyes as they are hugely important to me. If it were to happen to me, I would not hesitate stopping Hydroxy immediately. You will make your own choice but I seriously feel that risking permanent eye damage is too much to ask. By the time you might regret, it would be too late and no way to take it back.Even with Hydroxy, joint pain is not completely free. It helps and my guess is one of the most economic and effective medication that a doctor can give you.

Your joint pain could be helped by other medication or even supplement such glucosamine with chondroitin or other anti inflammatory supplements. I realise all these things will cost money but eyes (despite your poor eyesight) are worth saving.

Please think about it again and perhaps you could ask your GPs for their opinions/advice. Is your joint pain so bad that you find it worth risking your eyes?

Best wishes!

[Guatmom]

I live in the USA. My ophthalmologist checks my eyes every six months so that retinal changes can be caught early. Could that be an option? Sight is such a precious thing. Twenty years ago I had a virus attack my corneas and caused temporary blindness. It only lasted a couple of months, but I learned a new appreciation for my sense of sight.

[MrsMarigold]

Hello AnimalLover. It would be helpful to know what caused your vision loss now and how it effects your daily life. Also regarding your neuro’s opinion: is he/she monitor ing your eyes because of recent decline in vision?

If these questions are too personal that’s ok.

You are very young. Hydroxy is a very effective inflammatory reducer. I’ve been taking it for 6 years with my only complaint is more photosensitivity. I am in the US and my eyes are checked every 6 months. Would your neurologist agree to this? Also, there is a certain test that looks behind the retina that is available 2 times a year. Perhaps ask your Dr. about that? I forget the name of it but I could find out if you like.

It is difficult to advise you without knowing about your present vision status. As we go along here on lupus road there are medicines offered and none are risk free. That being said, hydroxy is usually offered first because it has a record for safety and eye problems with it despite what you may read, are rare. My eye doctor here said in 25 years she has had one patient.

I am assuming you have tried other anti inflammatory meds? NSAIDS? etc..

Best Regards, Titters

[AnimalLover115 in reply to MrsMarigold]

Thank you for your reply. Vision loss is definitely a large spectrum so your questions are valid. I have very low vision, I can only see light and large shapes. I cannot read, so I use technology which speaks out to me (which is how I am writing this response). I require a white cane or my guide dog to navigate my surroundings. I lost most of my vision when I was 12 due to a genetic condition. However, the exact genetic condition that caused my vision loss is unknown at this point, so my ophthalmologist is unsure how my eyes will react to HCQ. He did just complete a OCR on my eyes (which I believe is the test you are referring to) and I have that done yearly to monitor my vision. I can ask if it could be every six months instead.

I got a report back and there was something about slight thinning of the vessels in my eyes, but this report came after the appointment so I didn't get a chance to ask him about it.

I am glad to hear that it is effective. I have only been on it for about a month. I am actually already super photosensitive both with my eyes and in general. I wear sunglasses almost all the time.

Yes, I have tried pain meds such as naproxen, which unfortunately don't touch my joint pain. The pain in my hands, hips and feet has progressively gotten worse which is so difficult because I am usually a very active person.

Thanks again for sharing your thoughts and experience, it is very helpful!

Take care.

[MrsMarigold]

What a lovely reply. With the information you shared about your vision my next question I suppose is what is the prognosis for your condition? It may seem heartless to ask but not at all; it is heartfelt. Based on the answer to that you may have your answer as to whether or not the risk/benefit equation aligns itself for you. Next. What is the progression of your lupus? There are other lupus medications/ methotrexate being one many people like a lot and as it helps with joint pain and inflammation would that not help as well?Next there are pain/ nerve pain modifying meds gabapentin but I think you know that. Low dose prednisone a possibility?

I hope this helps. The roadmap for lupus is truly individual and unknown. Yours is especially challenging so I pray you will have very wise doctors on your health team. Best, Titters