Hydroxychloroquine

[edgewater100]

Reaching out for help advise,

I have been having issues with some unexplained brain stuff for about over a year now, the symptoms I have been having are a dejavu feeling, random thoughts from dreams and out of touch feeling leaving you feeling confused and awful, dizziness vertigo mood changes anxiety irritability loss of my balance and coordination bruising bleeding blurred vision shortness of breath and I’ve lost vision in one or both eyes randomly it will completely black out, double vision.

So I have had more MRIs, no new TIAs everything is stable, Lupus has been in remission for a year!! So I still have headaches,auras and this weird stuff in my head.

I decided to read about the drugs I am on and low and behold the hydroxychloroquine side effects hit what I am dealing with to a tee! I have been on it for five years now and long term use in people can cause these side effects even more so!!

So my question is has anyone else had this issue and what did you do!! I have never had mental health issues and want this stuff to cease and desist!!

I am going to re reduce my intake to 100mg per day and see if that makes a difference

But is there an alternative to hydroxychloroquine?

[HollyHeski Administrator]

I dont know if there is an alternative. I presume youve talked this through with your specialist?

I've heard quite a few of us with APS, query our symptoms of auras, dizziness but as per usual could be put down to many things.

For me my symptoms relate to my colasped subclavian arteries, we are all so different. Im on 400mg daily, for over 10 years now, my symptoms of subclavian steels came before starting.

Good idea trying to reduce and see if you improve.

[edgewater100]

Yes I have had three EEGs one for 3 days with monitoring, just had an MRI of brain w/wo with epilepsy protocol and everything is normal! I have talked to all my specialist and they said hmmm!! Maybe see a psychiatrist so I did he offered anti depressant drugs and Xanax! I can not take anti depressants. I have never had any issues with mental health, there is something missing and I think it is hydroxychloroquine long term use, maybe taking it a few days a week would be ok? Waiting for my Rhuemy to call me back

[lupus-support1 Administrator]

If taking hydroxychloroquine, it is essential you see an ophthalmologist every year. You will be asked to have special tests to ensure it is not affecting the eyes. 5 years is really not a long time: long term usually refers to 20+ years!

I would suggest you see your GP for a referral as soon as possible - please note, that an ophthalmologist is a medical doctor and not an optician. I write this merely to clarify for our readers.

I would also suggest you have your symptoms investigated. Just because your lupus has been "in remission", whatever that means, doesn't necessarily mean you aren't experiencing a flare. Therefore, please see your lupus specialist.

Don't put this offer because this will increase your understandable anxiety. It should be said that sometimes it is "normal" to feel anxiety and depression sometimes. It is absolutely normal and understandable because you are suffering from a debilitating, painful and chronic condition that has taken away a great deal of your life.

Having support is necessary and I hope that is the case with you.

With good wishes,

Ros

[edgewater100 in reply to lupus-support1]

I see a Nuro ophthalmologist yearly. Thanks for your thoughts

[jetjetjet]

Hi Edge -- i am following your post here as i am going thru some same things especially what i call my out of body experience - this is downright scary. Some good responses here so far and i am wondering about a replacement for hydroxy myself if it is in fact the culprit with me , i have been on 400 ml per day for 7 years now - i have a couple of phone calls out there now and waiting for responses from them Doc's as we speak .

I take a lot of meds because of the extent of my medical problems of course , and some heavy hitters at that .I guess they could also be the culprit or maybe even a combination of both or others -- i need to sort this out.

[panda60]

I tried Plaquenil 17 yrs ago but was only on it for one week as came out in a horrendous rash. Prof Hughes prescribed Mepacrine - an antimarial dating back to the 1940s. I have been on it since then. As with any long term medication there are downsides-yellowish tinge to the skin and black deposits on nails. I have regular tests to check liver is ok but no problems there.

[KellyInTexas Administrator]

I’ve had a difficult time with plaquinil, ( not brand, but the generic.) i never titrated to a full enough strength to have great benefit. My intolerance was gastric- so not what you are experiencing.

To answer your specific question, there are alternatives in the same family to plaquinil, but my Rheumatoligist ( Texas) said they are not as generally are not as effective. ( so no benefits, only cons.)

I have other concerns ( 2 actually. I’ll list them separately) that have caught my attention reading what you’ve posted.

1. I am concerned you may be having partial complex temporal lobe epilepsy. I had no idea at all I was having this - I was sent to neurologist to follow through on dysautonomia... and he listened to my symptoms- but asked me about others... - a lot like yours- and said... temporal lobe epilepsy. He ran an EEG and sure enough. ( these seizures hit the “old dinosaur brain “ and evoke a fight or flight response- so you will feel a sense of anxiety and not understand why. It’s all neurological- electrics going wrong. I would suddenly feel like an elevator had dropped out from under me. Also- floating- detached- hallucinated music! So hope there for you feeling better- anti epilepsy medication! )

2. Your eyes... another issue I’m sadly all too overly familiar with. Have you been checked for optic nerve atrophy? ( has to do with ischemia to optic nerves- not plaquinil.) I posted three separate posts on the same day of my test results. My optic nerves have thinned terribly- can not regenerate. The nerve cells have died.

I’ve lost a lot of vision.

I’d of course made sure it’s not the plaquinil having a very rare and unusual manifestation in your case- but the above listed problems I’m having are sounding a lot like you... and known issues with APS. ( I see a neuro- opthamologist for this.)

[Tofino5]

I can’t use hydroxychloroquine at the prescribed amount because it caused bleeding and migraines. I tried 2 different generics and a compounded hydroxychloroquine containing only the med.

My doc said there were no alternatives but it is interesting reading the other responses here saying there are.

She also said that once I saw relief of symptoms I could cut back to 2 or 3 doses a week. Instead of every day.

Is this med doing what it’s supposed to and relieving symptoms?

Be sure to see the ophthalmologist as hydroxychloroquine is known to cause specific problems.

Those are terrible symptoms and I wish you well.

[edgewater100]

What is better Anticoagulation? I am on warfarin with an INR of3.5 to 4 and a baby aspirin.

What else is there?

[edgewater100]

What do you take for the seizures?

[KellyInTexas Administrator in reply to edgewater100]

Are you addressing me? And have you been diagnosed already with seizures? If so, - you may be having break through seizures.

(Remember, I was diagnosed with seizures in spring of 2012, - pre APS diagnosis which was in late 2016.)

My neurologist started with lamical- 600mg was target dose but I broke out in non necrotic Stevens Johnson’s so was pulled off. At around 300 or 400.

Then switched to Dilantin I think... no help.

Then Vimpat. More targeted for temporal lobe specifically.

Then my large DVT/ APS diagnosis and migraines hit with a vengeance.

Now I’m on topirimate at 300 mg daily : 150 am and 150pm. ( I weigh 112 pounds. ) they are my front line and good also for cluster headaches.

My second line is methscolopine bromide. ( brain/ gut axis) The brain responds to the bromide.