Hydroxychloroquine

[Greentomatoes]

Hi,

Has anyone been taken off their hydroxychloroquine?

I’ve been on it 3 months. I have awful side effects: myosotis, itch, myopathy, headache, vomiting, general oedema (particularly thighs / sacral area), pain, swelling and the list goes on.

Now I have to wait and see what happens now I’ve stopped.

Would love to hear your stories please.

I read your posts everyday.

Xx

[Lisalou19]

Good afternoon, I’ve only just started this almost 3 weeks ago. All the symptoms you are mentioning I had before I started this 😬. I’m so waiting to feel the Benefits’s. I’ve had some headaches but not every day.

X

[Greentomatoes in reply to Lisalou19]

Thank you Lisalou19 x

[Krock1]

I have mixed connective tissue disease and have been on Hydroxychloroquine for 2+ years. Once I got the general malaise and aches under control, I asked to be dropped from an initial dose of 400mg per day to a maintenance dose of 200mg per day. That has worked well for me for most of the last year. I recently had a flare up and we raised the dosage back up to 400mg in November. The flare up was taken care of but I immediately got sick with a respiratory event. This happened when I raised the dosage once before.

I have again reduced the dosage because I believe it is causing the immune issue. I still have the respiratory thing going on 2 months later. Now we are trying to treat the respiratory thing and a flare up with prednisone 12 day dose pack. It seems to be clearing up but I have a few more days to go.

I found that when I taking the higher dose of hydroxychloroquine that I had issues with its strength, but it helped at the lower dosage.

[nanleighh]

I had all those symptoms prior to starting hydroxy. It took about 8 months to kick in for me. But it helped my joint pain, profound muscle weakness and somewhat on the fatigue. But that still comes and goes. I would encourage you to stick with it if you can. The side effects seem to wane with time. I wish the best for you. Every one is different so you just have to do the best for you. Take good care, Nan

[Greentomatoes in reply to nanleighh]

Hi Nan,

Thank you for your reply.

The rheumatology consultant decided I should come off hydroxychloroquine as I’m quite debilitated AGAIN!!!

I’m so sore, confused and tired I don’t know what to do!

Hopefully I will improve, if not it’s back to rheumatologist!

Xx

[nanleighh in reply to Greentomatoes]

I wish you good health and good riddance to your horrible symptoms❣️ Nan

[miccika1]

Never had issues with it. For me it was a game changer. I had so much joint pain i could not lift s spoon and hydrocloroqinin helped majorly. Im on it for more than 10 years. Once i lowered from 400 to 200 and immidiately dtarted feeling joint pain again. I never tried lowering again after that experiment...

[Greentomatoes in reply to miccika1]

Thanks miccika1,

So glad it worked for you. Xx

[milkwoman]

Have you tried hydroxy from different manufacturers? The side effects could be from the filler ingredients and not the hydroxy itself. It typically takes 6 months to feel/see benefits from hydroxy and it can take a year to see full benefits.

I’m in the US and I could not tolerate any of the generic forms of hydroxy due to the fillers. The bad effects grew over time (digestive issues, headache, overall unwell feeling). This all went away when I went on namebrand Plaquenil (I couldn’t even tolerate the generic form put forth by the namebrand manufacturer!)

I’ve been on Plaquenil since 2014. I take 300mg daily, split dose am/pm. Initially, it did take 6 months for me to start seeing benefits. I don’t think I could function without it but I do worry about my eye health. Anyone on hydroxy needs to be under the care of an ophthalmologist. I see mine every 6 months. He makes sure I don’t have any signs of macular degeneration, vision issues or toxicity. If I develop anything like this, I would have to stop the hydroxy. So far, so good.

[Margot]

I took it for 6 weeks, only side effect myosotis stopped immediately, I'm not convinced that would be transitory and my muscles are weak enough as it is

[Hidden]

Hi I read your post with interest I too had problems with the medication. Once I started on a higher dose was very unwell and had lots of side effects. After one month of stopping and starting the medication I resigned myself to the fact it wasn’t working and stopped taking it. Am seeing my rheumatologist tomorrow and in the meantime am researching natural cures and tips in regards to lupus. Have been fast tracked to a gynaecologist after being referred to hospital after a prolapse and worrying symptoms of cervical cancer so lupus was the least of my worries. Will get help and answers next Wednesday. Will be asking what alternatives to medication is on offer. Was told they try you with a few different tablets and it’s basically a trial and error approach. I hope you get answers and I think you have given it a go and was right to come off it. Why take something that makes you worse. Good luck with your future medication.

[Janet-Haslam]

Hi, I had to stop hydroxychloroquine after only three weeks as I developed a rash all over me which took a week to resolve. Awaiting rheumatology app to see what next. Hope it works for you as it seems a lot of people do have great success with it.

[lisa___s]

Yes I was taken off it due to a reaction that I’m now convinced wasn’t down to the hydroxychloroquine but at the time we couldn’t be sure.

I’ve had several months left without any replacement drug and have suffered some terrible flares but if you mean is there any sort of come down off the pills there is none. Apart from flares you should be fine x