Hydroxychloroquine Low Blood Pressure/ Fainting

[TumidusG]

Hi. I have started Hydroxychloroquine a week and a half ago, 400mg, for Lupus Tumidus (cutaneous). I am very up and down side effect wise. This morning I started passing out on my way to work and went white as a ghost (first time feeling this way). Has anyone experienced the up’s and down’s of taking it, I am having good days and bad days but haven’t quite hit the stride of more good days yet. Other symptoms are nausea, extremely vivid dreams and trouble sleeping, stomach pain/ tightness and an unusually painful menstrual cycle.

[MrsMarigold]

Hi. I’m sorry this is happening to you. Your symptoms are very acute. I think it best to contact your rheumatologist or GP. Do you divide your dose? I take 200 mg in morning and 200 mg in evening. MM

[TumidusG in reply to MrsMarigold]

Hi MrsMarigold. My GP said to try push through the first couple weeks as they are known to be the worst, but holy cow I seem to be getting a lot of side effects. I will reach out to my doctor and ask what they think, just thought my body would have gotten mostly used to the meds by now so starting to feel a little disheartened. Yes, I split it 200mg in the AM and 200mg in the evening.

[Severancered9]

Sorry to hear you havent had the best experiences so far. started hydroxychloroquine a few weeks ago and had a few questions myself. Please see my post which has some good responses you may find helpful.

healthunlocked.com/lupusuk/...

please also share your experience it may be able to help people. I have definitely felt more tired and have had to lay down but I haven’t fainted. I take both my 200mg tablet in the morning at the same time.

[Fedupofpain27]

hello TumidusG

First I am sorry that your are having so much pain and trouble with this medication.

I had similar issues myself and my doctor suggested that I alternate my days with the dosage.

First was to take 200mg every other day for a week then To take 200mg each day for a week then to take 200mg one day and 400mg the next (split morning and night) after a week or so the side effects started to ease and they have kept me on this amount saying it was to strong for me.

This worked for me as my body got used to it slowly but obviously I only did this with my GP’s advice first.

Maybe you could mention it to your GP?

I hope this helps and you feel better soon.

[TumidusG in reply to Fedupofpain27]

I am definitely going to ask about this. I was a little surprised I was started off on 400mg right away but just went with it. I know at some point my body will tolerate it and am happy to keep going but it’s the initial side effects that are kicking my ass so this would be a great solution to build my tolerance without dropping the dosage long-term. Thank you 🙏🏻

[Fedupofpain27 in reply to TumidusG]

Your welcome . Hopefully you can work something out with your GP to suit you.

[Jerg]

so sorry to hear this, I had similar episodes when I first started taking it but it subsided about 5 days. Hope you feel better soon

[soul22]

Hi sorry hear thisAre u taking after with full meal u must to avoid stomach cramps

That isn't hydroxychlorquine doing that sounds like u may have narrow sinus less oxygen hence dizzy faint feeling.

I had similar it passed by week two and was my conditions not hydroxychlorquine

Hope helps

[BeeManShrop]

Hi Sorry to hear that you are having so much trouble. My wife has been taking hydroxy for over 3 years now for SLE. She has never had a prescription of over 300 mg per day and says she has never had side effects anything like what you describe (she is 76 now so she will not be exactly the same -- if you get my meaning).

I think Fedupofpain27's suggestion is a good one. How the rheumy decides on the dosage rate I have no idea, but I do know that there are many loopies who are on a 300mg dose . Could you ask to try a 300mg dose per day and see how that suits you. After say about 2-3 months your body should be used to hydroxy and if you are still having symptoms then increase to 400mg/day.

I should say that hydroxy does take months before it starts to have the desired effect so you will have to be patient and allow time for it to build up in your system.

The other thing that has not been mentioned so far is which manufacturer is making the tablets that you are taking? It is well known that some people have lots of trouble with one manufacturer yet have no problems with another company. It has been said on this forum that it is the different fillers that are used to make the tablets that you may be reacting to. Perhaps a change to another manufacturer will solve your issues.

PS -- My wife has hydroxy made by Black Rock and has had no side effects.

Hope this helps -- good luck on your journey and let us know how you get on.

[Poshcards in reply to BeeManShrop]

The dosage is decided by your weight, my rheumatologist explained to me x

[TumidusG]

thank you for your response. I’m not sure exactly why they started me on 400mg straight away but I know they calculated it based off my weight. I believe 6.5mg per kg which would put me in around a 350mg dosage.

Good point on the manufacturer. Zentiva is the manufacturer of the tablets I am currently taking.

[PrincessTippytoes]

hey 400 mg is a very high dosage indeed i would suggest seeing ur rheumatologist and going down to 200 mg i was on 400mg the side effects are too much i think mow on 200mg and stable as il ever be been on treatment for 3 years since my diagnosis inn2021

[Mrsgem]

hi there,

When I first started taking high dose Hydroxychloroquine I also suffered low blood pressure and I had a few ear/balance/dizziness issues. All dismissed when I suggested a link to Hydroxy but it was the only change made that bought on symptoms. After a few months and a big flare it did settle down and now I’m on a low maintenance dose and thankfully have been flare free for a few years. (I must also say I think moving back home to the UK and out of the harsh UV of where I was living as an expat also helped significantly).

All I can suggest is speak with your dr to see if you can get help for side effects (I found a course of prescribed anti dizziness travel tablets taken as needed for the first few months really helped!). I also found on the higher dose the brand I took really affected my stomach (pains, upset, etc) and so I now only request certain tablets from the pharmacist where possible. I finding taking them just after my breakfast or lunch at the start of the day works best to help avoid some of these side effects.

Hope things settle down for you, and that the Hydroxy is a success at helping calm your lupus.

Mrs Gem 🌷