Reducing plaquenil dosage and the effects.

[Shellhar]

Hi. I have had lupus for 16 years. For the past decade I have been on 400mg of plaquenil and recently my rheumatologist decided that my lupus was under control and we could try reducing the dosage. I dropped down to 200mg a few weeks ago and I’ve had a permanent headache since that never goes away, skin lesions that I haven’t had for years are coming back including boils and for the past week feeling really sick and exhausted more than usual. Has anyone else gone through this and knows if I’m going through a detox/ withdrawal process that will get better or should I say screw this and put my dosage back up to 400mg

[Sunphoenix]

Shellhar, I think you may be getting withdrawal effects from the reduction of plaquenil. I would go to the Gp as an urgent appointment and let him know what’s happening. If you feel confident enough to go back to 400mg until you see him, you should do so and tell him what you’ve done, especially if the headaches go away after a while. I am on 200mg for about 12 years. Once I was asked to stop it when I had some supposedly side effects but I refused as I had felt so much better since starting it that I waited and the problem resolved itself without any intervention. I hope you get better soon.

[Shellhar in reply to Sunphoenix]

Thank you. I appreciate your reply. I will see how I go over the next week but I think you are right.

[panda2 in reply to Shellhar]

Oh dear...that's a bad reaction. Do you have a Helpline with your Rheumatology dept? Or a Rheumatology pharmacist? It would be worth a call there. Otherwise, I agree to check in with the GP.

Another suggestion, since Hydroxy has a very prolonged half-life in the body, might be to reduce a bit more slowly. Perhaps go to every other day or chop one in half and do 300/day to ease yourself down. It could be an initial reaction that will calm. You might need to do this much more gently. I'm sure your Rheumy would not want you suffering like that.

Panda x

[maggielee]

Hi I have only been on 200mg, but also take mmf - mycophenolate & even reducing hydroxy in half made me feel more tired than usual so I was back to dragging myself home, even with a slight reduction.

I have gone back up to 200mg as agreed by my rheumy, maybe with newish guidelines on hydroxy they are trying to reduce it, but maybe your doctor/s should discuss other medication options if they are asking to reduce it. Or is it we become functional with the meds & they think we can reduce your meds as your 👌ok.... and were not, just look it... I guess it is the only way they know, but you shouldn't suffer if your worse.... I am sure the docs don't want that..... Feel better soon...ml

[CecilyParsley]

Hi, I feel your pain. I was on 400 mg Hydroxychloroquine for nearly ten years, then my new Rheumatologist put me up to 600 mg. I was nauseous and giddy with a real headache and my vision was even more blurry. I went to have my eyes tested and the Optician diagnosed macular oedema. The Rheumatologist then took me off Hydroxychloroquine completely saying that I no longer had Lupus, APS and Bechets. He said my brain had hysterically imagined the peripheral vision loss and that all I had wrong was Fibromyalgia?? His last words were if you get really sick you have proved me wrong?? My headache disappeared after about two weeks but eight weeks on I am struggling badly. The fatigue is debilitating, I have been plagued with mouth, throat and genital ulceration, my joints ache, my Trigeminal neuralgia has kicked in. My GP point blank refuses to put me on even a low dose because I do not have Lupus now even though I was diagnosed by St Thomas’s and two other Rheumatologists. I feel very depressed and resigned to feeling this way now. We are going on holiday on Saturday and I just have no enthusiasm because the thought of packing and travelling make me want to cry. I am so sorry to have hijacked your post with my moaning. I truly hope that you have a receptive Rheumatologist and GP who are willing to listen and help you

[TM1970 in reply to CecilyParsley]

Omg, that is awful, I think everyone on here’s worst nightmare. Bless you X

[CecilyParsley in reply to TM1970]

Thank you. It is such a huge relief to chat with people who understand. Just sorry that I hijacked this post. Sometimes it just spills over doesn’t it? X

[TM1970 in reply to CecilyParsley]

I hear that! It validates your concerns, reassures you you’re not mad ha ha. Anyway I hope you’re ok X

[CecilyParsley]

Thank you, I too have lost all faith in my doctors. My Optician was extremely concerned about my eyes and referred me to the macular unit. The “ urgent” appointment took nearly a week and by the time my eyes were scanned the oedema had gone, so the Ophthalmologist discharged me despite the lack of peripheral vision. I have requested all info and scans from my Optician but they are refusing. Both myself and my carer saw the scans clearly showing a bulge in the macular which the Optician said was causing the headaches. My GP is rushed off her feet and just shrugged, The Rheumatologist is dismissive and uncaring. My Health Board is currently three Rheumatologists understaffed. I will eventually be allocated to one of the posts they recruit and I am praying that whoever it is will actually examine me.

[TM1970 in reply to CecilyParsley]

I can’t get over this. I’m so sorry it’s happening x

[Hamptons]

Screw this!

Symptoms return whenever my dosage drops.