Friends...off hydroxychloroquine, what do you think?

Ive been on it for a year and half...first high dose, then a lower dose (my doing ,but notified rhumey)..He pulled me off it the other day (hes a bit of a smart arse), because he said im so low dose, may as well not be on it...(hes diff everytime i go there)..last time he was sure if i came off, id be full blown lupus...Anywho..its a week tommorow Ive been off the stuff hydroxychlorquine, and im not sure if its it, but I feel like i have lead in my boots...and im pretty tired....

I also have some leukocytes in my urine, but local Gp not called me yet...its out of range according to online records...and a skin thing in "that area" she gave me steroid ointment for....

30 Replies

oldestnewest
  • Firstly, the drug stays in your system for a while, it doesn't go out in a week, more like 3-6 months. However, there can be an increase in lupus activity if the dose you were on was controlling it. So if you feel "off" it could well be that your lupus benefitted from the low dose. I'd give it another week and then if I'd still feel rough, go back on it.

  • Ya well i figured mild lupus...mild amount of the drug...I hate taking stuff, but i agreed to that amount...seemed ok, and 6 months ago the rhumetologist said its a low dose, but if u feel ok then its all good...He even said he could give me it in a single pill dose, than me taking it every other day...or if i needed him later on as an emergency, then just call...This time he said, "you must have a sensitivity to drugs..its such a low dose..just quit it...see me in 6 months...Another time he said if u went off that drug, you would have full blown lupus pretty sure...So back and forth....So initally the first 3 months were that big dose, but i did have side effects and he said cut in half...i asked later on if i could cut in half again (my gut bugged me and he said sure, ok) he dont remember that convo....So i have build up likely, but not as much now after a year and a half...the second part at 100mg roughly daily for a year...so started at is it 400 for 3 months, then 200 for like couple months, then 100 for a year....(energy was back)...He put me on high vit D as well, and i swear that helped the mild aches in my fingies pretty quick. I kinda wonder if he is back tracking, as he jumped on lupus so quick when he diagnosed me...and pushed pills really fast....I thought he would watch for a while as my stuff was mild, but had the higher ANA speckly, and inflammation only pos tests...hoooo hummmm

  • Nah, they are guided by our symptoms and by response to drugs. It is better to hit the lupus hard at the outset, then 'backtrack' or slow down dosage when it calms down. That's what he's probably done here. I understand you don't like taking drugs but even mild lupus could go crazy, so a v small dose of hydroxy shouldn't be a problem.

    The thing is we end up taking these decisions on our own - and we are no doctors. It feels me with no confidence going to a doctor who says 'it's up to you if you want to stop/start x drug'. Ugh, no - you're the doctor, I told you my problem, you tell me what I should do, not relinquish responsibility that quickly. But there we are, ultimately it is our body, our health, I suppose.

  • I found with him...he is better seen in the morning....

    I one time was able to get there early, and he was a totally different guy!!!!

    Usually Im busing it, catching the ferry etc., and cant get to him till like 1:30 in the afternoon...Im lucky if i get 10 minutes with him...

    Like you said, keep an eye on it ,and if its still feeling off, then go back on (i'll let him know first, incase he wants me to get any test done before i take it again)...

  • Almost sounds like you need different drs. Both of mine the GP and Rheumy are firm with me. Explain reasons or offer other alternative to me. And they dont tolerate whinning from me. Love em both.

  • Ya, but this guy has a major ego...My "orthopedic doc" suggested I might have mild rhumetoid arthritis at the time...The "rhumetologist" thought that was hilarious, and said isn't it funny your orthopedic doctor try to make a diagnoses of rhumetoid arthritis? Whinning? I just like to be able to discuss things....I bring a list so I can quickly read stuff off, just incase something is important to lupus...His patients seem to get like 10 minutes in the office..

  • It wouldn't hurt to get a second opinion. I wish you the best. I don't like being on hydrox but my rheum said I have to stay on it.

  • Thing is over here in BC Canada, your lucky if you can get in to see the specialist at all...It can take a year or more. The orthopedic doc I went to first, well it was his receptionist that tried to get me in to the 2 lady rhumey's, but a no go...However, she had a friend receptionist in another office, got me in to her boss, my now Rhumey (took couple months, and many don't care for him). As for a GP of my own, well she went back to Africa and there is a shortage of GP here, so I see who I get...usually a student gp lately, and they only here for 3 months practicum...So, its not a perfect science lately...I don't mind the hydrox, but not the super high dose at first...I peed brown like tea, had headache, and no appetite at all at about 3 month mark..My guts bugged me still on 200 a day, but 100 I felt ok, and had energy back...(it took longer, I guess). I was never sure if menopause did this, or hypothyroidism, or lupus for sure....they seem to overlap some how etc...

  • So sorry to hear that. I'm in New York City and I'm happy with my current rheumatologist who at first said I shouldn't take the generic hydrox but to only take Plaquenil which is unaffordable. I took it for several months and just started the generic hydrox because I only have a small co pay for it. The brand name upsets my stomach but I've learned to take it with milk and oddly enough the hydroxy doesn't upset my stomach but seems to give me headaches. I do hope you get to see another rheumatologist who can be more exact and sympathetic.

  • Thanks Loretta....

  • You are welcome. Take care.

  • Here I thought Alberta had it bad with doctors and specialists. I guess I just lucked out My main concern is my drs are same age and older than me. What ever will I do when they retire ??????

  • Ya..BC...well rural anyways, has it bad....I must say though, some of the student doctors are quite good, but you might not get to follow up with them at a 3 month practicum...

  • My daughter is on hydrochoroquine the lowest dose she was put on that dose by her Lupus consultant and told she would have to stay on that low dose for the rest of her life, or she would have a flare she went into remission last November. You need to stay on a low dose I think.

  • i agree....

    I certainly will let him know if i start feeling crummier...Im pretty tired so far...and my stomach is bothering me, and i feel i dont wanna do much..but that could be anything I guess...

  • Larrylad123, yes i think so too...but not sure what the rhumetologist is up to??? I think he is back tracking...I think the med worked well at a low dose and it stumped him....Whatever I have....it got it quickly under control...He was thinking more things would show up...Im not sure, but its all weird...He said the dose was so low it would be doing nothing at 100mg a day.....so seemed he used the excuse i was very sensitive to drugs...(i just dont like them)...BECAUSE i asked it to be lowered a year ago..he was ok with it...even said there is a 100mg pill ..so didnt have to take 200mg every other day...I think he got mixed up..or was reading my report for jan.2014 when i went in or something and not jan2015...

  • Sounds terrible we're in England my daughters care was bad but once we took her to London and saw a top Lupus consultant he's been great. He has told her steroids if she has a flare coming down off them very slowly 1mg a week till she's on 5mg then 1/2 a tablet a day otherwise it can make you flare. And to stay on the hydrochoroquine forever as I said lowest dose to change her diet to a paleo Diet drink lots of organic green juices she has done for about 14mths and has gone into remission.

  • I cant afford organic stuff, but I try to eat balanced meals....

  • He also said that it stays in your body about 1 week so some people can get to the point of having 1tablet every other day, which I think might daughter will do if she continues to stay well but remember Lupus damages tissue in the body so take care taking yourself off drugs!!

  • The rhumey took me off...

    I in the past just asked to lower the medicine...I just wanted to see how low the dose could be, and still work for me....It seemed to be working at 200 mg pill every other day...(that be like 1oo mg ever day)....6 months ago he was all fine with that the rhumey, and even said he had a 100 mg pill for prescription, or I could do the 2oo i had every other day... Maybe he thought I would crash in time?? My bloods came back all good ....He then said,"you are super sensitive to drugs, and maybe you should just stop hydroxychloroquine"....It was odd...I did have some reaction in the beginning at 2oomg @ 2 times a day, so we halfed that...My stomach still bothered me, so i asked if i could half again....he was ok with that at the time....I was starting to feel more like me too....(that bright spark feeling)....I wonder if initially he jumped to conclusions about lupus?? MAybe he is back tracking....? I did have the ANA 1:320 and fine speckly...and other time in 2008 tested by coincidence(back issues)...1:160 speckly....and only other thing CRP 11 one time, and 7 another time....the 11 came when my hearing went odd one time...so ENT guy did that CRP test and was concerned (no one else was concerned)...My thyroid (Im hypo) started to have fun too, suddenly i was often overmedicated after years at this level of meds...but they left me there from 2008 till about now (couple inteventions meds diff levels)...oh and menopause/post meno too...So who knows what I guess Im saying...I was having symptoms of some sort...stiffness (I thought me bed)....muscles in legs tightening (I thought me heavier trainers) etc...BUT if it is lupus, and now no meds....Im gonna be back at square one soon....I wont take steroids(I am sensitive to those for sure)...so months for levels of plaquinil to work again i guess...Or let him know right away(which i will)...and ask my local gp to test my ANA and other stuff, and send on to the Rhumey in time....So much stuff crosses over...lupus? thyroid? menopause/post meno/hormone things....

  • "My "orthopedic doc" suggested I might have mild rhumetoid arthritis at the time...The "rhumetologist" thought that was hilarious, and said isn't it funny your orthopedic doctor try to make a diagnoses of rhumetoid arthritis? Whinning? I just like to be able to discuss things....I bring a list so I can quickly read stuff off, just incase something is important to lupus...His patients seem to get like 10 minutes in the office.."

    It's a very good thread. You got a doctor from hell by the sound of it. So appalling and even so patronising!!

    Orthopaedic surgeons can tell if you got arthritis or you haven't. Yes, they can diagnose RA.

  • Yes and the orthopedic surgeon is kind of a sweet old guy (tad eccentric)...but good guy. What i dont like about the rhumetologist is he goes back and forth on things...I could be totally wrong on this, but I thought mayyybe because hes not sure, or made a wrong call and doesnt want to admitt it, that he is making it look like I want to be off the hydroxy...So he is maybee back tracking to see what happens when i am off it...ie: come back in 6 months was his last comment...I said twice to him,"you want me to go off the drug"? So...this is where I am right now....There is a rate a doctor thing online ,and my rhumey has some comments against him (cant talk with the guy type thing)....He is a smart man and has helped many, but a few comments about mistakes, not listening etc...I thought i had an ok doc/patient thing with him...maybe he was having a bad day, but wow that could be bad huh for the patient?

  • Follow your gut instinct and what your body tells you, may I say? If a low dose plaquenil is helping you then by all means, continue to stay on. It's sad that you would have to deal with someone like this which gives you extra worry when you should be focusing on getting better. Pity your orthopaedic chap can't deal with medications. He sounds nice.

  • I know..

    Thanks Omega...

    Im waiting it out a bit to see what shows up....so far just mild pains in hands(i do type a lot), and the most off feeling around my left knee (like someone tightening a belt around it)...That feeling has gone now in the knee....I try to keep moving (walkies) while Im still feeling like it, because whatever I did/do have, can take your life "essence" "force" away when it comes on...I do also have hypothyroid stuff going on too(up and down), and post menopause (likely ups and downs too)...I have a thyroid test on Feb.15th, be good to see what its doing now again..My menopause was easy, but behind the scenes must of been having fun....I had hardly any hot flushes...weird, huh?

  • Hi I do read that your urine test was flagged up? I know your SLE is mild. But it is often recommended to keep someone with SLE on plaquenil as a "precaution". It's entirely up to you :) Good to hear your post-menopause wasn't too bad at all. I too suffer from thyroid disease. Thank you for sharing. xx

  • not enough white blood cells in the test to be anything apparently...

  • yes my urine test was flagged, but no one has called me, which is odd....I have to see a student Gp on tuesday about the skin thing, so maybe she is waiting for then....or next Christmas? :( I been having more flashes of mild pain as i go along, so I'll give it a month see what happens (maybe it will satisfy the Rhumey). Thanks Omega :)

  • So i asked the student GP to read me what the rhumetologist said....She said he didnt say too much, but this: He thought in the year and a half on hydroxychloroquine, that I might have shown more symptoms...

    I thought hydroxy was to get rid of your symptoms?? I'm so confused....

    Ive been on different amounts of that drug for a year and a half, so now Im off it and wonder how long till its out of my body???

    I did read somewhere, some people still have hydroxychlorquine in their body for up to 5 years (in small amounts)..

    So my last ANA before hydroxy was 1:320 and speckly...only 3% of the population have that....3% is not very many people, so hmmmmm...

  • pIve been on a high dose of hydroxy for just under a year now and to be honest I dont know what I would have done without it. Just think of the worse day with lupus and it will help you to realise this stuff, however much we dont like taking it, gives us a meausre of our life back.

    Im having a not so good time at the moment, why?? I halved the dose because I thought I was good enough not to take it twice a day. Im not the docs and thought I could lessen it for when im really bad. Unfortunately, getting that way now. Going to the docs tomorrow - hopefully i can get back in remission quickly.

    Best of luck to you all. Diane

  • I have to wait till July see what the rhumetologist wants to do....Meanwhile I have to check in with local GP's....and in June I will even have a Gp of my own again finally... I had a day of where my hearing was coming and going, and that's happened before couple years ago....Its seems stress and lack of sleep make that happen....Its normal again after 2 big sleeps....

You may also like...