Reduction in Plaquinil

[Gillyg]

I am really struggling to get the correct answer I have taken Plaquenil for 30 years with no problems my consultant in the last 18 months has decided to reduce me from 400 to 200mg on the 2 occasions we tried I have noticed a huge increase in my joint pain. I went back up the first time but know he won’t consider it. I am struggling to cope. He can’t give me another reason for the pain. I have my eyes checked regularly so no problem. I have recently lost weight but that was due to a TIA. Which changed my taste. I feel tired all the time and in pain. I have a meeting with him tomorrow what can I say to him. Is this the new ruling. Do I have no say in this. Thank you for advice.

[maggielee]

Hi A few days ago djlr posted info about plaquenil - lupus.org/resources/protect....

Doctors here are looking at weight & this site is looking at height on the amount of plaquenil to prescribe. You can google on this site (health unlocked) about plaquenil, as you need to ask your doctor why now the reduction, which maybe in light of more recent studies & recommendations in despencing it.

I too found a reduction hit me hard & I discussed it with my rheumy & based on my weight she was ok to let me increase it again (where another doc was trying to reduce it) goung back up has has helped me feel better...

I was wondering if your doc is going to cut you back on this med if there is another medication that would balance the reduction of plaquinil ? I was also prescribed mycophenolate when hydroxy was not as effective instead of increasing it & seems a good balance for me.

What you want to discuss with your doc is avoiding getting a flare that will cause you damage or setbacks & a plan how too asap. Best wishes ml

[Gillyg in reply to maggielee]

Thank you for getting back. One minute they are saying it’s because of my eyes and now it’s weight. I have been a lot less weight during a flare then I am now but as you know weight can change a lot. I get the feeling the way they talk it’s about completing a tick list. They have never offered me any alternative or another pain killer. They reduce you and then say I’ll see you in twelve months. I am getting very disappointed with them. If they can’t help me then it’s no point me spending my time traveling to see them. Thank you again.

[vaderviper in reply to Gillyg]

Plaquenil is not a painkiller, it is an antimalarial. It is used primarily for 2 reasons, 1) to help prevent a vasculitis and 2) it has been found to extend life in a lupus patient. The main reason for taking anyone off Plaquenil is because it can possibly lead to blindness (few patients develop what we call retinal toxicity which could lead to blindness, fortunately very uncommon). You should have your eyes examined yearly to make sure there are no problems as a result of taking Plaquenil (theses problems rarely show up within the 1st 5-10 years). The early signs of potential damage are a kind of a shimmering light, so-called ‘photopsias,’ which often are in a circular pattern. Any change in vision, whatever you perceive as different from normal, should be checked out.

Good luck in your treatment.

Dr. S.

(retired Neuro-Ophthalmologist)

(in the USA)

P.S.

Plaquenil usually (if it affects your weight) will cause a weight loss, but everyone reacts differently to any drug). Also, during a 'flare' a rheumatologist will often put you on prednisone ( or prednisilone, (which does not have to be converted from prednisone into prednisilone - makes it easier on the liver). I know lupus can at times be very difficult to deal with as that is the reason why I had to retire early.

[Jmiller623]

Recommended dose is 5 mg/kg. Many rheumatologists just aim for 400 to start. There was probably a crack down or new regulation placed that is making them reduce the dose. If it’s tolerated, doses should always be titrated to symptoms. The risk of retinal damage is real but low and starts after about 5 years. We’re you having any visual disturbances lately?

[Hamptons]

I had mine reduced from 400 to 200. I was told it was due to changes in NICE guidelines. It was too high for my BMI. I got to 3/2 tablets and was told the new guidelines were even lower for recommended doses.

When I reduced it from 400mg I immediately became symptomatic after 5 years of essentially being symptom free. They gave me methotrexate as well as 100mg of Plaquenil -that was not good.

The NICE guidelines is either a party line or true as three separate medical professionals have said it.

[Paul_Howard Partner LUPUS UK]

Hi Gillyg ,

If your current dose of 400mg is above the recommendation in the guideline based on your ideal body weight then your consultant will want to try and reduce it to offset risks of long-term side effects, especially if you have been taking the medication for so long.

If the reduction to 200mg is causing an increase in your symptoms perhaps you could discuss the option of a middle ground? Some people are on an equivalent of 300mg/day. They often take this as an alternating dose of 200mg one day and then 400mg the next.

[Gillyg]

Hi all I have been taking this last time 400 then 200 but I have still become in increased pain and tired all the time. My weight is less at the moment due to another small stroke which took my taste away. I have my eyes check 6 monthly for changes all good except for extreme dry eyes due to SS. I have asked to see a different consultant I was stable before the latest one took over. It’s stressing me out. Thank you all. 👍👍

[chrisj]

Thank you for that useful information xxx

[Joy_1]

Hi,

I was on 300mg. My consultant at the time sat on a medicines panel so was very precise indeed when it came to dosage. It was very easy to cut up the HCQ as it's a dry not coated tablet and there's a nice groove down the centre. Someone gave me a pill cutting contraption. Looks rather like a mini stapler with a fine blade, I'm sure you can get them v cheaply from the pharmacist/online.

I'm now on 200mg HCQ but I'm only doing okay because my main drug that's keeping the horrors at bay is MTX.

I was told at the time (6 years ago so may be out of date) that the dose is based on your weight. But also they take into account the total dose you will receive in your lifetime.

[CecilyParsley]

Hi Gillyg there does not seem to be a consensus between all the Rheumatologists I have seen. I have been on 400 mg for ten years. In March I saw a new Rheumatologist who upped my dose to 600 mg. Long story short I have ended up with macular oedema and a very nasty headache. I did lower my dose back to 400 mg on advice from my GP but my BP has shot up and my headaches and blurred vision persists. A Rheumatology Nurse advised last week that I stop it altogether so I have experienced horrendous withdrawals going from 600 mg to zero in a week. I would actually call your local Rheumatology helpline and get some advice. I wish you the very best of luck .