My rheumatologist is reducing my Plaquenil from 400mg to 200mg per day. Does anyone have any experience with reduction in hydroxy? Any bad reaction? How quickly? Many thanks.
Reducing Plaquenil anyone?: My rheumatologist is... - LUPUS UK
Reducing Plaquenil anyone?
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Purpletop
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Hi purpletop
You don't say why your rheumatologist is asking you to reduce your dosage.
I was asked to reduce mine at a point when I was well and stable. After 6 weeks my symptoms returned and so I went back to the higher dose. It wasn't a major issue trying the reduced dose and certainly worth trying, but for me it demonstrated that 200mg twice daily was the optimum dose. I'm 5'9" and so for my normal body weight that probably does tally; the dosage goes with your ideal body weight for your height.
The same with you, he thinks lupus is doing well but I also have unexplained bruises on my hands and legs and he thought Plaquenil is the culprit. I'm also on CellCept and will stay on that unchanged. I'm asking because I'm 3 days into the reduction and I'm getting a return of my long forgotten chest pain, so that seems a bit too much of a coincidence.
It took a good 6 weeks for my symptoms to return; my understanding is that hydroxychloriquine does stay in your a long time, but it's always safer to report any new symptoms (or return of old ones) so why not contact your GP on Monday for advice?
Hi......I suffer within hours if I try to cut my placquenil down. Joint pain in hands particularly sets in fairly quickly and I have not been able to last a few days with a lower dose. Like you presently on 400 mg daily and would like to cut down but sofar has not seemed possible. I would be interested to hear how you get on and whether I should have just tried to persevere with the pain.
I must say, I'm wavering but i will see how it goes tomorrow. If I'm still feeling off tomorrow, I'll go back on it, not worth it. I can give it another 3 months, say and try again. How's the new med doing for you?
Yes....I think that sounds a good idea. I'm tolerating the new med sofar though after a great day on Monday it's been downhill since with the dreaded fatigue/nil energy until later on in the afternoon. I literally managed to get some stew into the slow cooker, empty the dishwasher, cook tea and that was my lot. Lots of sitting around. So I guess it's working out whether it's just the adapting to a new med or a flare up looming. Last night chest very tight in bed and lots of tingling in legs and arms?? Last bloods 10 days ago were higher blood pressure than normal at 140/80 (nurse said she would monitor) higher ALT (liver enzymes?) and low Creat so that's a change too. These will be redone next week so can monitor then. Other than that .....it's ok lol. Hope the ALT doesn't go higher or they will take me off them.
Did have a moment today when I had my occasional "Oh sod all these meds....will I be better coming off them and taking painkillers"! But of course the answer is no.
PS: Also had a brain MRI on Wednesday too due to memory problems and left side arm/leg feeling weaker and requested by rheumy. I don't expect anything untoward here though.....Just routine. So all in all ....and as only we can understand....very much a mixed bag week. Bonkers really because on Monday I felt the best I'd felt for ages and said to my friend I can see me returning to work. She did look up to the sky to see if any pigs were flying (as she has a chronic condition herself). So...next time I will not be so over confident.
On a plus though it's my birthday on Sunday so going out for a meal with 18 other family members so trying to pace pace and pace before then and hoping I don't get that spaced out, achy feeling we can get and that I have to 'act' normal. Hey....that's a long winded answer (Oops sorry). Ps: Hope to hear how you get on with reduced med....you might inspire me again to try.....just not on the mo though! x
ooh, side effects of your new drug are nasty! Let's hope they settle down. Our livers are first affected by all these drugs, my GGT is high all the time, apparently mycophenolate can concentrate the enzyme in the blood. But not as high as it was at diagnosis. The balancing act that we have to do each time we move to another drug, huh? You've just started the drug so it will take some time before you feel its benefits but returning to work, hmmm. I'm ashamed to say that I've given up on that idea.
Have a lovely birthday tomorrow - 21 again?
Hi purpletop, I have had hydroxy reduced many times in the past. GP and rheumy agree that it's best left alone now, as I not only felt more symptomatic, my bloods confirmed it. This would happen within a month of reduction. Have you tried 400mg one day and 200 mg the next? Sometimes this alternation for a month, helps before you finally drop to 200 mg and so on. Obviously your dr is taking concern over your bruising, which I have too, but my overall opinion is, when our lupus is stable, it's the meds working properly. Have to say you have posted quite a few problems recently, so am surprised they are quick to say, you're alright now. Take care.
Purpletop• in reply to
The recent problems were severe headache and a bad reaction to the lumbar puncture. The rheumatologist attributed the headache to the increase in mycophenolate (which I now rectified) and he sent me to physio for the back ache from lumbar puncture. From a lupus perspective, though, he liked what he saw in the blood tests and general improvement since 3 months ago when he last saw me. Still, the reduction seems to take me back to symptoms I haven't had for a year now, I think I'll go back up for another few months and see - I'd rather have bruising than chest pain!
Hi purple top,
I cut my Plaquenil down in exactly the same way last Summer and have had no bad effects at all. Also there has been no reduction in the effectiveness of the drug which is great. So give it a go, hopefully you'll be fine. Good luck.
May I ask what other drug you're on? I've tried to up my mycophenolate to 1.5g per day few months back and gave me a 2 month long severe headache, so now I'm back to 1g per day. I'm thinking that a reduction in Plaquenil will need to be supported by the right dose of the rest of the drugs or a substantial improvement in lupus. Well done for being able to reduce without problem!!
I am pleased about it. And I don't take any other drugs at the moment either so that's great. I think you just have to keep trying till you get the dosage right which will depend on how your disease activity is going ..... The complication being that changing the drug dosage affects that so,it's a bit chicken and egg... Really hope you feel better soon and that you find the right dosage to keep things on an even keel.
I dropped from 300 (200/400 alternate days to nothing - but my symptoms came back within 2 weeks (mainly joint pain and fatigue) . I'm now on 200 daily and don't notice any difference from the 300. Hope you feel better soon purpletop
But do you still have the joint pain and the fatigue or have they settled down by now at 200? I'm not bad with joint pain, I can tough it out but chest pain scares me, so hmm, don't know if I can continue with the reduction just yet.
Thank you, everyone. My chest pain is back and persisting, so I have a feeling I'll have to go back up to 400 daily for a while but I'll see what the rheumatologists suggests.
Vvvv glad you asked this ?, Purpletop!
You've got some grrrrreat replies!
I've been dreading the day any of my medical team (haha) tells me to reduce my 400mg dose of daily plaquenil.....
Wishing you all the best with refining your treatment plan...and wishing these things weren't so flippin complex....but, grrrrrrrr, that's lupus....
Hi. I'm on 400mg Hydroxy for RA - but many features of Lupus. Last time I took it with methotrexate for a year. He got me to drop to 200mg after six months and I can't say I noticed any difference. It was assumed at the time that it was too mild a drug to hold my active RA in check.
But I felt it made a difference overall and after 4 months off both drugs had to take steroids for a month and then asked to go back on Hydroxy alone. My ESR dropped for the first time from 52 to 17 within a few months of going back on it. I have no joint pain worth mentioning currently but am rather ill in other ways just now with stomach, skin and scalp extreme parasthesia, fatigue plus Raynauds and very dry eyes. My GP was thinking I should come off Hydroxy and see if skin issues improve but I'm very reluctant. My friend with RA tried to drop doses and was in a lot of pain within a week so went straight back up to 400mg. I think its a more effective drug for me than they were expecting it to be - but I'm hating the general itch so we will see.
Will be interested to find out what the rheumy says when I see him in ten days time!
Purpletop• in reply to
Hydroxy caused keratosis pilaris for me - unsightly and a pain to take care of. Which is why I was agreeing with the reduction in the first place. But I'd rather take that than chest pains or paraesthesia, so I agree with you about trying to stay on it in your case. Thank you for sharing your experience.
• in reply toPurpletop
Ironically I had to force myself to take a tablet at breakfast today! I'm so itchy and uncomfortable now with rashes/ hives that all my drugs seem rather daunting so your reply came just in time to persuade me - thanks. My son has Keratosis Pilaris - at least it isn't itchy or painful like the stuff on my face. He's been on Roacutaine for his acne for months and it has helped with this skin problem too. I didn't know Hydroxy could cause it though. X
Purpletop• in reply to
My KP started on my upper legs and upper arms but now is spread all over my limbs and torso. GP looks blank at me when I tell him how annoying it is, no suggestions as to what I should do other than exfoliate and moisturise. Which I do but it doesn't make much difference to how it looks. I'll look into Roacutaine, thanks for the tip!
• in reply toPurpletop
Roacutaine is a powerful drug and can have nasty side effects - not sure they would prescribe it only for KP but my son's was pretty awful the dermatologist said it would help and it seems to have although he exfoliates his arms daily as well. Poor you it can't be pleasant. It would be interesting to see whether it went away if you came off the Hydroxy but its a big gamble as I know only too well. Good luck. X
My rheumatologist asked me to reduce my hydroxy when I saw him in february.
I'm to take 2 tabs one day and one another instead of 2 every day. He said it was because of new guidelines and being weight related, plus the rare side effect on the eyes...I was mystified but I'll do as he asked and see how I go. Last time the pill dosage was halved the fatigue came back with a vengeance so the dose went back up again...hopefully I'll manage this time....
My rheumy explained to me once that the reason the dose relates to body weight more over time is that Hydroxy works cumulatively and the toxins also build up over time so that after five or six years on it you become more at risk of eye problems and may need to come off it or have more frequent eye checks. The risks to eyes in the first few years are absolutely minimal he told me.
I successfully came off Hydroxychoroquine 12 years ago & my Lupus was quiescent until about a year ago. It was great to have 12 years drug free but it has been a battle to get doctors to recognise my symptoms now as a Lupus flare & the rheumatologist I eventually saw gave me such a hard time for ever having come off it - this was done on the advice of my then rheumatologist! Although it has been hard waiting for the Hydroxychloroquine to kick back in again,I do not regret being off it for 12 years.
I agree, being drug free for any period of time is good - but 12 years is amazing! My rheumatologist said that's not uncommon if we manage to bring the lupus under control in the first place. That's what I'm aiming for, anyway. Are your symptoms worse now than you had initially?
The fatigue is probably about the same but I have muscle pains for the first time,previously it was joint pains! I don't think I would have been so bad for so long,this time,if doctors had taken me seriously when I first presented with muscle pains,swelling & fatigue.Initially,I was even told that since I hadn't had a flare for 12 years,I probably didn't have Lupus.Eventually,blood tests proved them wrong,I do have Lupus & it's flaring.Then it took 6 months to get back into the system to see a rheumatologist & my follow up appointment is 6 months after that - My GP & I have requested an earlier review but apparently that's not possible.Initially,when I came off the Hydroxychloroquine,I had 6 monthly reviews with the rheumatologist but that was stopped after a couple of years.With hindsight,I think that should have kept going as that would have made it easier to get back into the system.
This is something I am considering if I ever get to some sort of remission, such as yours - whether to stay at a low level dose of some drug and 'on the books' with the lupus, rather than go off for good and then fight again to get back in. It took me 2 years to get diagnosed this time round.
Interesting about the different symptoms, let's hope you'll get that seeing to earlier than 6 months - just push, push, push, who knows.
If it helps..... my initial dose of 400 taken twice a day was reduced by Dr d'Cruz of the London Lupus centre as he said 200 was the usual maintenance dose. I take steroids and painkillers too.
I don't remember any alteration in symptoms, but it does get hard to untangle what causes what! Good liuck
My lupus consultant has just said to me about reducing dose as I'm on so many other tablets for various problems. He said to try and persevere if I can .He said I may not need the 400mg dose as I'm on belimimab infusions every 4 weeks .He's also said about reducing my steroid dose by 1 mg each month (I'm down to 10 mg at the mo )so I'll eventually be on just 5 mg .Thatll be the lowest I've been before I get ill normally .but worth a try again as I've been on steroids for many many years .Reduce on one tablet and now I've got to start macushield for my eyes. Never ending. I'm sure I rattle lol
Xx
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