Just been prescribed Hydroxychloroquine. Any advice on this drug?

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My Rheumatology Nurse has prescribed Hydroxychloroquine to be taken in addition to current medication, Methotrexate. Disease activity has been wuite high these past few months so I'm hoping this will make a difference. I'm a bit concerned about it making me sick. I switched to mtx injections to reduce the horrible side effects. Any thoughts and advice on this new medication would be greatly appreciated. Sending love x

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  • Posted

    You do need to have retinal screening when taking hydroxychloquine. Guidelines were updated in 2016 and say:

    "Screening guidelines were updated this year, with some pertinent changes for our profession to note.[1] Cumulative dose is no longer a risk factor, but more of a tool in the screening of our patients. The actual body weight rather than the ideal body weight is used to determine the threshold dose. The maximum safe dose is 5 mg/kg of actual body weight. For example, a patient who weighs 175 lb would be at a threshold dose when taking 400 mg daily.

    Screening interval has also been updated. All patients will need a baseline screening before or within 1 year of initiation of hydroxychloroquine. The baseline examination includes a fundus examination. SD-OCT and visual field testing are added to the initial examination if a concurrent maculopathy is present.

    If, and only if, the patient is at the recommended maximum daily dose and does not fall into a higher risk category, the screening interval is 5 years after the initial evaluation. This is because the incidence of retinopathy is less than 1% at 5 years and only 2% at 10 years. The incidence increases to 20% at 20 years of treatment. Of note, however, if a patient makes it to 20 years of treatment and does not have retinopathy, the risk of converting to hydroxychloroquine retinopathy is 4% every year thereafter."

    So - did your GP tell you to get your retinal screening? I assume an optometrist (at the optician) can do it, mine certainly did in Scotland.

    I don't take it - but I gather many doctors feel it is a drug with few side effects. Good luck with it.

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    • Posted

      Thanks for your kind reply Eileen. I was advised about the eye test by the nurse and again by the pharmacist so it must be really important. I just hope it works with as little side effects as possible. Not sure I could cope with feeling nauseous again. I'm just settling into Methotrexate injections having suffered horrendously on the tablets. Thank you once again. Take care xx

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  • Posted

    Hi I have been on both these meds for almost 2 yrs. Gradually I tapered off hydroch  methtxte prednsolon and folic acid.  Lately i felt nausea and mild headache after taking methxte so I started tapering off the dose and finally now I have stopped it completely. Hydro (plaquenil) 200mg 2 tabs daily have been cut down to one tab only. Prednsolone completely stopped. When I feel inflammation in joints shoulder freezing etc I take a pain killer . trying to manage according to my condition. Continuous use of these meds affected my complexion which became darker than before and skin pigmentation very visible on my forehead and skalp. After stopping these meds my skin color is gradually improving say 50% recovery. So I will not suggest anything. Ur physicians consultation and ur own judgement play a positive role in taking the max benefit by adjusting ur dose or stopping the med if u feel any bad side effects. So wish u a speedy recovery. Good luck
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  • Posted

    Hi Elizabeth. I have been taking Hydroxychloroquine and methotrexate for over a year. Like you I switched to injections for the mtx, not for any side effects - though it definitely upset my stomach. However, compared to the misery, pain, and fatigue from RA I was more than happy to go through whatever was needed to put the brakes on that. I can’t see any special pattern to it, but I take my mtx on a Monday morning (+ Folic acid Friday evening) and perhaps I am more tired on a Monday afternoon/Tuesday morning.

    I have nothing much negative to report about Hydroxychloroquine, I take it in the evening, with dinner. I had been taking it in the morning to start with but I changed, thinking it was causing me indigestion. 

    About 3-4 months into treatment, things were still quite tender (fingers, hands, wrists, feet) - though my level of swelling never impresses rheumatologists. For a couple of months I also took increasing doses of sulfasalazine. I can definitely report nausea to the point where I had just reached my full dose when had to drop that. (I also developed a pinprick rash on my feet and lower legs). It took more than one week for the effect to subside. 

    From all the various reports I have read on this and other fora, I would urge everyone to bear in mind we may each respond in different ways to these drugs. What I experience positively or negatively may differ from another person. We might hear from those who are frustrated, scared or struggling with specific treatments, while many others just get on with a treatment with success, and RA stops being such an issue. They may never come and read or comment here.

    This is also stated from experience. When my RA emerged, I discovered 2 work colleagues had rheumoligical conditions; one RA and one psoriatic arthritis. Both have been in successful treatment for decades. They are now on biologics, but also had earlier successes on DMARDs. I have known them years, and never knew they had any condition - because they are dealing with it. One said to me “I’ve mostly forgotten what it was like”.

    Stay hopeful.

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  • Posted

    I was started on hydroxychloriquine at diagnosis was on it alone for 4 months. I had no side effects and no relief either. It was like a sugar pill for me. MTX was added after about 4 or 5 months - injectable because I have a horribly sensative stomach. The MTX did a bad numbe on me. Nausea 4-5 days of the week, fatigue, hair loss, increased liver functuon numbers, UTIs, just felt gross! It made me sad, depressed and hopeless while doing very little to help RA symptoms. After 5 months i asked to be taken off the hydroxychloroquine because I felt that it did nothing and maybe made me more ill. My symptoms were worsening and after a few months of MTX only and I was switched to Enbrel. I'm happy to say that although I still have a few "hot" joints, I feel DO much better both physically and mentally. We are all different as mentioned and respond in our own way to these meda. I hope you find what works for you with less side effects.

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    • Posted

      Thanks for your reply, I'm glad you have finally found something that suits, I agree the Methotrexate is pretty hard going and it's too soon yet for me to see any difference with having the hydroxy chloroquine added. It seems to be a matter of trial and error for all of us. Long may you get relief and here's hoping I get some too. Xx

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  • Posted

    Elizabeth 

    I have been on this as a combination with MTX tablets for quite a few years, these are in conjunction with my Enbrel weekly injections, i have been on biologics since they came to the uk. I hope these work for you. Sometimes it be a little trial and error to get the combination for you.

    God bless

    Bill

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