Hi, does anyone take 600 mg daily of Hydroxychloroquine? I have been on 400mg for nine years but my Rheumatologist has upped my dose to the 600 mg. I am nauseous, with almost a motion sickness type feeling, sensitive to light and a little giddy. This morning I have severe jaw pain on the left side. Not sure it is related. Any advice woukd be appreciated.
Hydroxychloroquine: Hi, does anyone take 600 mg... - LUPUS UK
Hydroxychloroquine
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CecilyParsley
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Hi CecilyParsley I've never heard of such a high dose. I would be very concerned about side effects and long term effects on my sight. Why was hydroxochloroquine increased? Hydroxochloroquine 400mg already makes me nauseous and lightheaded but seems to help with joint pains to some extent.
I am having constant flares. My Bechets is particularly active and I have had extremely painful genital and anal ulcers as well as the oral and nasal sores. My skin on my legs and feet is so painful it looks burned and joint pain, muscle weakness. I cannot tolerate Colchicine and he does nit want to start me on immunosuppressants as I am hopefully having the first of my knee replacements soon. I have been on Hydroxy for nine years and was very nauseous initially so I am hoping that I will get used to this new dose.
What's the reason he is not prescribing immunosupressants? There are plenty of them available, like mycophenolate
Because he said my inflammatory markers are not high enough to warrant them. I don’t know how he knows mind you as the last time I had blood was 14 months ago.
I don't buy the reason. If you have symptoms if a flare up that's enough. Plus why then increase HQ if all is well... A lot of folks ha e symptoms without increased inflammation meaning there are also non inflammatory processes that are part if lupus PLUS we just dont have proper markers yet. I would question him/her on this. And ask for two month trial.
I am afraid I have no faith in any of them. Like many people I had several years of very odd unexplained health problems before I became so ill I could not weight bare and was screaming with pain. I was taken into hospital and they were very concerned then father two days said I had a virus and discharged me. I paid privately to see a Rheumatologist who told me I should return to work to take my mind off things. When I saw him in clinic two weeks later I had a molar rash, blistered legs and arms, ulcerated mouth and severe pain. He handed me a leaflet, said I would have to take meds that could make me blind and that there was no cure. I joined Lupus UK bought books and felt that the Lupus diagnosis did not fit all my symptoms. I asked him if he had tested me for APS. His response was you have read about it so now you have it. I walked out. As I got home my GP was ringing to say that he had called her saying I must be started on aspirin immediately. I asked to be referred to another Rheumatologist. The next one said I did not have Lupus but Bechets and Fibromyalgia. He took me off my meds. Long story short I was diagnosed with low grade lymphoma and scheduled for an open chest biopsy. I requested a referral to St Thomas’s. I was diagnosed with SLE, query Bechets, Raynauds, APS and Fibromyalgia. On my next visit told by the same Rheumatologist I had UCTD and discharged. I refused to see another specialist until I became very sick. My next Rheumatologist told me my main problem was obesity. I gained ten stone being pumped full of morphine and steroids and was either in bed or in a wheelchair. He never examined me. I started choking and was referred to a Gastroenterologist who was highly suspicious that I had CREST because of my rashes, choking and spasticity. The Rheumatologist refused to investigate stating I already had enough wrong with me. I then lost control of my bladder. His words were nothing to do with my illness get your GP to refer you to a Urologist? I kept complaining of knee pain. He kept saying it’s your weight until one day my knee joint collapsed and my knee cap ended around the side of my leg. The Orthopaedic surgeon confirmed that due to the severity of the arthritis the only option was double total knee replacement with leg shortening on one side. I have only seen this Rheumatologist that upped my Hydroxy once. I know my story is very similar to others.
I’m surprised the your consultant has increased your hydroxy mine has been decreased l was on 400mg daily and due to new guidelines I’m now on 200mg the dosage is now weight related as it can damage your eyes
I have my eyes tested every three months now
Great thinking...
Great💜
I agree with others that’s an unusually high dose. At one point my consultant thought about increasing my 200mg but took about three minutes to say no, because the dose is weight related, and I’m not heavy enough to take more. Since then, the new guidelines about the effects on eyes came out, so my dose is correct.
I still get my eyes checked every year though.
Thanks I am extremely overweight as I am barely mobile so I guess that is why he thought it was worth a try with me. I get my eyes tested every six months but he has suggested three monthly now
Hmm, I understand. I’m glad he suggested the eye tests though.
Yes I am dubious but you get to the stage that you will try anything. I was on 46 tablets plus creams, injections , physio therapy, two years ago and in a wheelchair. I have got myself down to 16 tablets and I am out of the wheelchair and have lost four stone. Since December last year I have had Norovirus, Chest infection and repeated ulceration, fatigue and pain so I have to give it a go. I hate being so debilitated but the only relief from the painful ulceration which appears to be from my mouth down my gullet to the genital and anal areas are syringes of Instillagel which give temporary relief.
You poor thing! I can completely understand being ready to try anything when you have all these problems. Please accept a cyber hug from a stranger xx
Bless you thank you. Hug accepted and very welcome. Hugs back to you.
I see. If you are over 220 pounds that dosage might be correct for you. I still dont know why no immunosupressants...
Based on height not "weight" what your ideal body weight should be :
lupus.org/resources/protect...
In United States hydroxychloroquine is now dosed on actual weight rather than ideal weight. This change came about 2016 I think. Here is a link to a dosage calculator:
mdcalc.com/hydroxychloroqui...
My rheumatologist based my dosage on my weight. I’m on 300mg, entering my 2nd month on it.
New dose change as of 2016
I also have mine checked every 6 months
Actually the dose depends on weight. Are you a heavy person? You can find online what is the ideal dose for your weight. For example im 60kg or 132 pounds and 400 is good for me. If you are heavier more could be ok... try to slowly increase the dose could help w side effects
Yes he worked it out that it would be ok but my GP is unhappy with it. I cannot remember feeling this rough but then I have been on 400 for nine years.
Try slowly increasing over a month. When u first started i was on 200mg was feeling nauseous then got better, then started 400 and was fine.
I have been on the increased dose for two weeks already. I look and feel rough. I do not want to take meds for the sake of it so if I am still the same in a few weeks I am going back to my normal dose but thank you
No!!!💜
Based on Ideal body weight for height- not weight.
Affects eyesight- especially if over 10 yrs on plaquenil.
Fat "does not absorb" plaquenil/ Hydroxychloroquine .
It is for our organs / joints/ etc ( keeping lupus in check)
Skin - remember it is the largest organ
Height - 5.7 in 400 mg
Height- 5.1/2 in - 5.61/2 in. - 300 mg (max)
Height- less than 5.0 ft - 200 mg (1 pill)
New Guidelines as of 2011
Talk to optomologist too and get eye exam once a year to check your peripheral vision!!!!
Most important.......💜💜💜
lupus.org/resources/protect...
Thank you so much. I was 5 ft 8 inches but have lost 2 inches ..not a joke . So I should be on 300 mg not 600 mg? I have actually been taken off it now as I developed macular oedema in one eye. Strangely I was referred urgently to the macular clinic and was seen three days later and they said the oedema had gone? The Opthamologist said I did not need to be seen, the Rheumatologist is seeing me in three weeks and my GP is not sure what is causing the awful headaches so I will just have to wait and see what they say.
aao.org/eye-health/diseases...
What an interesting situation.....for you. I would discuss going back on to hydroxychloroquine with your rheumatologist, but would definitely suggest to start lower since it is Ideal Body Weight for your height....and your concerns for your eye should be taken into consideration as to whether you might be more susceptible to the medicine? Most people it is a build up in the system over many years and that is why we may experience problems.
aao.org/eyenet/article/hydr...
Symptoms and Signs
Symptoms. Patients in earlier stages of hydroxychloroquine retinal toxicity usually do not experience symptoms, though the rare patient may note a paracentral scotoma that causes trouble with reading as well as diminished color vision. However, most patients usually notice symptoms only after scotomas have become severe. When allowed to advance, hydroxychloroquine retinal toxicity leads to loss of up to three visual functions: acuity, peripheral vision and night vision.
Signs. On examination, a telltale sign of hydroxychloroquine toxicity is a bilateral change in the retinal pigment epithelium of the macula that gives the commonly described appearance of a bull’s-eye. This is a late finding, however, and too late for screening to be useful.
In early toxicity there are no visible signs, but field, OCT and mfERG changes can be detected. If abnormalities are present only unilaterally, investigate other causes besides hydroxychloroquine toxicity (see “Differential Diagnosis of Bull’s-Eye Maculopathy”).
Thank you. It feels more frustrating than interesting at this point. I had no peripheral vision in the lower left quadrant and I am still experiencing slight light flashes. At this point I am in limbo which is never a good place to be
Flashes of light 🤔—-could be even a different problem. That was one signal my father-in-law had with a detached retina.
Another friend had night vision loss and they went in to do cataract surgery and found out she had a detached retina.
Definitely see the ophthalmologist, wishing you the best and a really “good answer & correct answer” to your problem. 💜
And remember “Peripheral vision loss” is the first thing that we are to look for in problems with hydroxychloroquine
Yes my Optician repealed my tests twice and showed me the chart where I missed a few light flashes in the top right quadrant, got all of them in the lower right and upper left but got none in the lower left quadrant. They used the hospital grade scanner to scan the back of my eye twice and showed me the images. To me it looked like a long thin snake that had eaten something large. The Optician said that was the free fluid and the headache was consistent with the ensuing pressure behind my eyes. She warned me that my eye could rupture due to the pressure and that if I experienced a lack of vision suddenly kr sharp pain through the eyeball I should go straight to A&E. Three days later the macular clinic said my eyes are normal and I got a letter from the Ophthalmologist saying my sight is normal and he does not need to see me.
Go to another ophthalmologist and take the paperwork from the first original diagnosis. And if you did not get that paperwork, call and get it sent to you by email or fax .
Of course I don’t have any answers, it is does occur with doctors seeing different things but I would not let that go without seeing another ophthalmologist to get the correct diagnosis confirmed or “explained why” when “they look at the “original paperwork” that you bring in from the “original doctor”.
If you could get one recommended to you by your rheumatologist that probably would be the best route to go since they could find one that is more familiar with “Lupus and Eye problems”.
With Lupus, we have to be very particular with our eyes we have other problems that can occur:
lupus.org/resources/how-lup...
I think that is good advice thank you. I left the first Optician with a bit of a scare but they should be able to email me the scans. Ridiculously the scans they took, although hospital grade could not be viewed by the Opthamologists at the hospital? So I went through the scans again in a different branch of Specsavers that sent them to the Opthamologist who Decided I did not need to be seen. It might be different if he had seen the first scans or had the report on the peripheral vision issue. I was so annoyed that the letter he sent me said that he understood that I demanded to be seen based on visual disturbances which was absolutely not the case. I will chase the Optician tomorrow thank you, it really does help to talk it through with others who understand the issues . I am very grateful
No - new Guidelines as of 2011
Based on height
5.7 & over 400 mg max.
5.1/2 - 5.6 1/2 - 300 mg max.
Less than 5 ft - 200 mg max.
lupus.org/resources/protect...
Guys did you read the whole article? It clearly says : " The maximum dose of Plaquenil is 6.5 mg/kg of ideal body weight per day, regardless of whether a person is overweight, underweight, or normal weight. One kilogram (kg) equals 2.2 pounds." Then it talks about height as an additional consideration...
No based on Height- as of 2011
New guidelines
See ophthalmologist once a year to check peripheral vision - I know 4 people in Lupus Support Group on plaquenil/ hydroxychloroquine for over 10 years- eyesight changed and had to STOP placquenil.
Stay on new proper dosage and hopefully we can use it long term.
Great med for Lupus if monitored correctly 💜💜💜
Way too much – it is based on your height not your weight.
Please read the article below so that you know your correct dosage and confer with an ophthalmologist once a year and discuss your dosage.
lupus.org/resources/protect...
New Guidelines as of 2011:
Height - 5.7 inches 400 mg max!!!
Height- 5 1/2 in - 5.6 1/2 inches- 300 mg
Height- below 5 1/2 inches -200 mg
I see my Ophthalmologist six monthly anyway and now I have been recommended to go for eye tests every three months. After nine years on 400 mg I have had no problems with my eyes other than dry eye and scratched corneas.
No- see new GUIDELINES as of 2011
lupus.org/resources/protect...
Based on height not weight----
See ophthalmologist once a year to check peripheral vision- great medicine in proper dosage💜💜💜
Hello Cecily. I have not heard patients taking 600mg Hydroxychloroquine for such a long period of time. Did your Rheumatologist explain why he has increased the dosage? Have you thought of calling the Lupus helpline or contacting your local doctor for advice in how you are feeling since going in the higher dosage. Keep in touch and let me know when you have spoken to someone. Sending hugs. Dessi72
Hi Dessi, I am getting headaches, nausea and shaking when I do anything more than walk for a few steps so I am considering dropping my dose back to 400g daily. The Rheumatologist I saw was rushed and only saw me because when my own Rheumatologist left I refused to see the other doctor at the hospital as both myself and my GP had made a formal complaint about him. He said why haven’t you been given steroids for your flares? I was honest and said I have such little faith in my doctors I never go unless I have an infection. He offered a referral to gynaecology for the Bechets which I also declined as the last time I was under them they shrugged a lot and did nothing. He probably thought I was a complainer which I am not. I have only ever made one complaint in my 57 years. He had none of my notes and said given my levels of fatigue, obesity, pain and number if flares it was worth trying a double dose of Hydroxychloroquine. I looked at the Amsterdam grid yesterday and the lines are starting to appear wavy which is a worry so I am seeing my optician a month early. I will let you know how I get on. Thank you so much for your concern. It is very much appreciated x
Thank you Louise I will definitely look into that. It is the most miserable condition and I am normally an optimist and try to be cheerful but it reduces me to tears and makes me so miserable. Xx
Thanks Pippa. My second time of seeing this Rheumatologist he said that I was the sort of person who was referred here there and everywhere and thy found nothing wrong.?. He insisted I had no macular odema and that my brain had fabricated the lack of peripheral vision??? He then took me off the Hydroxychloroquine saying that I might have had an “ autoimmune episode” years ago but in his opinion I do not have Lupus, Bechets or APS..this based on one blood test , no history taken or physical examination. He said I have Fibromyalgia. I disagreed with him. His response was you don’t sleep so whether you like it or not you have Fibromyalgia. I am quite lost now to be honest. I have no fight left in me. I was diagnosed with SLE ten years ago by a Rheumatologist, confirmed by a Haematologist and Neurologist. When a second Rheumatologist took me off Hydroxychloroquine saying I had Bechets I became quite ill. My GP referred me to St Thomas’s who confirmed SLE, tentative Bechets, Raynauds,, vitamin D deficiency, Hypothyroidism, Pernicious Anaemia. I have been on Hydroxychloroquine now for ten years.
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