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Plaquenil (Hydroxychloroquine) - Vision Issues?

Hey all, my new rheumatologist has just prescribed Plaquenil (hydroxychloroquine) for my extensive osteoarthritis and the blood flag for RA - even though my actual RA symptoms are slight. Side effects include lots of vision issues - some of which can be permanent and can lead to blindness. They say tell your doctor if you’ve developed

“Signs of retinal damage include blurry or distorted vision, flashes of light or floaters, or loss of night vision.” Plus photophobia.

I already have all that thanks to MAV and Visual Snow. Has anyone tried this med long term?

Thx.

PS I’m hoping it’s Botox finally working again (the last round failed) rather than being the effects of a 20 day prednisone taper. I won’t take prednisone again for a lot of reasons but I am enjoying the break from MAV.

Hi Emily,

I took hydroxychloroquine for a few weeks for fertility reasons and was pretty sure it made my MAV worse so stopped. My understanding bwas that eye health risks came with long term use, and they recommend regular eye tests. So I’m not sure, might be worth checking in with your neuro about this. I bet it’s hard to differentiate some of the symptoms, and your MAV symptoms may be being aggravated by this medication.

Sorry to hear you’ve got so much on your plate!

Anna

PS. Re prednisolone: I took it for about 2 months during my most recent pregnancy (which ended in Dec) and then felt really quite good through jan and feb MAV-wise!

Congratulations on the new baby!

Thanks for your response. I’ve only had one dose so far. Felt good until I read your message then became instantly dizzy. I guess we’ll just add MAV-induced PTSD to my long list of maladies.

If the HCQ doesn’t ramp MAV too much and it helps me walk with less pain, or sleep through the night, I’ll be on it long term. It takes six months before you can fairly judge it for arthritis purposes. At this point it’s less risky than the major surgery option I’ve been given. My concerns are more drug interactions. It’s known to play poorly with heart meds and diabetes meds. Got three of those.

Oh well. You takes your chances.

Congratulations again on the new baby. My only biological child is 19. At 48, I am in no hurry to be a grandma yet, but it sounds pretty good for the not too distant future. I admire your energy.

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Oh no so sorry you felt dizzy after reading my message!! I get that sometimes, put it down to our ever-sensitive impressionable migraine brains and nothing more. As you say, we have to take our chances. Hope it helps with the arthritis.

Eek, I should have been clearer about my pregnancy. I suffer from recurrent miscarriage, so sadly my latest pregnancy ended without baby. HCQ was one of the proposed treatments to dampen my immune response to pregnancy, which didn’t help anyway. It’s ok though, we’re on the surrogate route now, so fingers crossed for that! I reckon there is a link between my recurrent mcs and this MAV, everything was triggered by the first mc.

I’ll let you know when you can congratulate and compliment me on my energy when the proverbial stork brings me a baby! :blush:

I am so very sorry. I was concerned about that being the case. I’m no stranger to your predicament. We had a lot of nothing and some near misses. Gave up entirely. After five years I went on Metformin for PCOS. Then I got pregnant out of the blue. Found out the day before 9/11 - needless to say no one cared when I called on 9/11 to tell my family. It was a horrible pregnancy. High risk from day 1. We both nearly died, together then separately. They finally induced early so I wouldn’t stroke out. Then he nearly died after when it took a while to determine my breast milk was poisoning him. Never felt failure like that before. Given our abysmal family history, the fact my kid has inherited both MAV and my spinal issues and my son’s girlfriend is just as messed up health-wise as us, I suggested they procure rather than produce a new family (in several years).

So we were one then done because orphaning my son wasn’t acceptable. 17 years later I moved his girlfriend in with us because her mom’s boyfriend beat her. They were way too young; I’ll square that with God later. Then a year after Bailey moved in, Corbin’s ex-girlfriend Sierra also moved in. She too is from an abusive, though different, situation. They broke up three years ago but by mutual agreement of everyone involved (except her birth mom) she stayed part of the family until she was legally of age to move in. Both young women get along really well. Sierra, the second of my two daughters, has a boyfriend, Nick. He gets along with my son and is a regular at dinner. We’re a big, weird, loving, happy blended family. These girls have never had safety, consistency, unconditional love or a father figure. They are thriving to their own abilities. Now I have three kids. And my husband struts around in the Best Dad Ever T-shirt Bailey gave him.

There’s always hope, though maybe not in the way you expect it.

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It was lovely to read your post, thank you for sharing. I’m sorry you’ve had to go through such a tough time with your pregnancy and afterwards. I have a strong feeling it wouldn’t go well for me if I did manage to sustain a pregnancy. Too many bad signs. Your family sounds awesome, I trust we’ll end up with a colourful blend of a family too. One step at a time. :hugs::hugs:

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I sincerely hope you do. :heart:

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Hi Emily - not long term, but I took Hydroxychloroquine for 6 months as prescribed by a dermatologist who diagnosed Frontal Fibrosing Alopecia (FFA) - basically an autoimmune thing that attacks and destroys your hair follicles. I was very concerned about the side effects re eyes as I have a retinoschisis in my right eye, but the dermatologist was very nonchalant about this and just said if I had any issues with blurring to see the optician. My brother, who is a pharmacist, was concerned that I wasn’t offered an eye examination before starting hydroxychloroquine as in his area ( Warwickshire) it is standard procedure.
That said I didn’t seem to have any side effects and it seemed to help with the FFA - so far so good anyway. As for my eyes , well they are often blurry - dry eyes, hay fever etc - , plus I have a floater in my right eye which comes and goes too , but I am due my annual eye examination next month so will be getting my eyes checked out. I think if you are taking Hydroxychloroquine long term, regular eye checks are definitely recommended. Nothing in life is straightforward is it!

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Thanks Jan. I thought my doctor was a bit on the nonchalant side with my vision, too. But he’s the first person to pull all my MRI info and actually know what I was talking about. When I listed all my diagnosis he kept holding his head in his hands and rubbing his little bald head. It was so endearing.

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Bless him!

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