Is anyone taking hydroxychloroquine? ... - Hughes Syndrome A...
Is anyone taking hydroxychloroquine? I need to start taking this along with my warafin. I'm new to this and scared to take new meds..
My body would feel heavy, sluggish. Like I moving through molasses. Been on hydroxychloroquine since late 2004. I feel better overall. When off for a length of time, say a few days. I get that feeling coming back. May cause dizziness and very minor vision impairment. As a result, I see an ophthalmologist to keep tabs on my eye health.
I'm a newbie to this medication too I've been taking it two months alongside warfarin and a few other meds.I had tummy ache for about a week but it goes.
hi I've been on this for ages and it did take a bit of getting used to and it did take a high dose to really be effective but it's brilliant at controlling my fatigue, rashes, joint pains, hand + feet pains and ulcers. I'm now on a maintenance dose but am getting my usual winter worsening of symptoms so will probably up the dose again.
before starting I had full eye screen + bloods done and I have this repeated annually, so far so good even with being on max dose for a few years!
Good luck, it really is worth persevering through the few grotty weeks.
Love Sharon x
i had just made mention of the same, i take1 thru 5 s of warfarin, mostly 3 s-4s rite now ,blood tested every 3 dayss started taking hydroxy about a week ago . started 200 ml once a day ,in 2 weeks 2 a days and not quiye sure after that. i have aps and the reason for the hydroxy is rheumy found 3 other blood disorders on nov 28 th, said warfarin couldnt handle all that, plus a dia. of avascular necrosis i hope its still step 1 . why are you guys on both i am curious and also the dosage jet
Hi,
I had a PE in March and another one in August. I was just diagnosed w/ APS. It depends on the week, but I typically take 7 warfarins 4 days a week and 8 the other days. I am starting w/ 200 ml of Planquenil and after a month I will increase to 400 ml.
Take care
I of course take the warfarin for APS with history of PE and I take the plaquenil along with methotrexate for RA. Sharon
Unfortunately it didn't help me, so I stopped taking it.
How long did you try it? It can take 6 mos or more for full effects...
I used to be on this when I was first diagnosed as they assumed I also had lupus so was put on that to help. I was ultimately on it for about 6 years before my GP questioned this and it turned out I didn't need to be on it as I dont have lupus, just APS. I had no side effects from it but I remember from reading about the side effects that it can be quite scary.
I hope it helps you to feel better in yourself.
Hugs Kate x
I have been on warfarin for almost 8 yrs and have been on plaquenil for almost 3 months now. I did have to make a slight increase on my warfarin but that is not unusual for me to have to change the dose a few times a year. I take the plaquenil twice daily with carafate and helps protect my stomach.
Hi, have been on Warferin for my APS for about a year, (diagnosed with APS and Sjorgans by Prof Hughes), a lot of my symptoms improved on Warferin, but fatigue and foggy brain didnt so the Prof put me on Hydrocloryquine, took a couple of months, but now my energy levels are so much better, and my ability to think, am so grateful to have a life back ( thanks to the wonderful Professor Hughes). hope you see the benifits soon, kind regards
Hi I have been taking Plaquenil brand for 2 years I had headaches to start with but they passed. I take 2 tablets after I have my warfarin. They do help the aching bones and muscles.
Good luck.
Gadgets
Thank you for all your comments, it sure helps. I started Plaquenil today, so far so good.
Happy holidays~
I was put on this a couple of weeks ago , as was on Warfarin which I am still on and then Clopidogril, but was told to stop the clop and commence this hydroxy. Also was told this also helps to thin blood. I shall start taking mine at night as I suffer from dizziness and just to be in control.
Hiya I've been on Warfarin for 22years now on a 9 - 10mg dose daily and I've also been on plaquenil for almost the same time....yes I sometimes have to change the dose and have annual eye checks but it's made a real difference to my joints, rash and general brain-fug......I have my life back (most of the time lol)
My rhematologist wanted me to add in the hydroxychloroquine at the time I was on warfarin prednisolone and azathioprine, as i had lupus and wanted to go on holiday to a subtropical location, however I had a bad reaction (projectile vomiting). He thought hydroxychloroquine would stop me having a photosensitive flare.
More recently the new consultants who took over when he retired asked me again because I was suffering badly with the fatigue and hydroxychloroquine is supposed to help with that. I did say no because it was such a bad reaction last time.
I have been taking hydroxy for about 8 years. My rhuematologist and eye doctor made me go off for 6 month a couple of years ago, just for an eye test of sorts. Thankfully I passed, so am back on my 400mgs daily. Without it everything aches. As long as you have regular eye check ups they tell me no big deal.
I have been on hydroxy for 3 months and take two diff strengths of coumadin.. i have had stomach aches since and wonderful bodily functions which i don't want to discuss. I feel foggy and still walk like I am drunk and have to use a cane or my electric chair. I ask my rhuemie questions but he says he doesn't have the time to explain everything??? What type of doc is this???
Kelly, been on it 2 years- had some nausea here and there in the beginning that went away, and also caused some weight loss at beginning which was very welcomed and a nice side effect!! I still keep zofran for nausea (odanasteron) but almost never use it.
It took a few weeks to notice a change and it was gradual, but soon i realized I was able to jump out of bed instead of crawl out in pain... I regained a lot of movement I had limited myself to due to pain without realizing how much I had been limitied until I was regaining it. It was like a reawakening in a sense!! I could do jumping jacks again, lol!
I hope it helps you similarly as it really gave me my life and energy back.
Plaquenil works ! I stopped taking mine because of dark circling round my eyes - what a mistake !!!!!!!!!!!!!!!
Have been diagnosed as having fibromalgia but alsway questioned this diagnosis so started taking plaquenil again and things have got better !!
Also started having acupuncture course via hospital has made some difference standing straight for first time in years 
I was prescribed Aspirin 340mg as a blood thinner...works like a charm....and Plaquenil for "undifferenciated mixed connective tissue disorder"....was feeling horrible....like I was drunk and had the worst flu along with it....the Plaquenil made me feel well again....I check my eyes every 6 months....so far I'm OK....I don't ever want to feel as sick as I did before I was prescribed Plaquenil.
Have been on varying doses of coumadin for 14 years or so, on a new higher dose now, 7.5mg per day. Have been on plaquenil 200mg twice a day for the same amt of time. I have recently had some sight issues, and I am being examined closely to see if it is in response to the Plaquenil. I've been on it so long, I couldn't say what it's eafects are at this point. It could be doing a lot of good, but since I've been on it for so long, who's to say? I can tell you that 15 years ago, before any drug intervention, I needed help dressing and could no longer drive myself anywhere, and was basically a useless lump of flesh. As far as plaquenil goes, I believe it is not affecting my rheumatoid or osteo-arthritis in any way, tho, as if I miss one single twice a day 200mg Celebrex, I can feel it to my very core. My diagnoses include UCTD, Lupus, APS, RA and OA, Fibro, Reynaud's phenomenon. I have occlusions in my ulnar arteries from clots. I have a positive Allen's test... very entertaining when they bring in all the Newbies to see it.. Brain fog so bad I hardly know what day it is anymore...
