Hydroxychloroquine

[Tinajl]

I am seeing my consultant next week and will started on hydroxychloroquine guessing there is lots of people on this what are the experiences please ?

[Jogest]

They work for me one 200mg tablet twice a day. No side effects.

Consultant put me down to one a day after six months but had to increase back up to twice day.

Anti immune disorder most likely lupus.

John

[MelbourneLupie in reply to Jogest]

Hi Jogest

I have been recently diagnosed with Lupus of Skin.  All other results blood/urine have come clean. But I have had skin eruptions and unbearable itching the last 8/9 months.....Have been asked to stat Plaquenil 1 tab 200mg per day and increase it to 2 tablets in two weeks.   Worried about losing eyesight. currently no issues with other organs or eyes.

[Jogest in reply to MelbourneLupie]

Hi

I'm fortunate in that I have a family connection with an Optometrists and he has advised me that the dose I take will take years to build up to levels that could affect my eyes, I also have yearly eye examinations, so its not something that concerns me as the benefits of the hydroxychloroquine out way the risk of eye damage.

Jogest

[MelbourneLupie in reply to Jogest]

Hi Jogest

Thank you for posting that, That is very reassuring as I start hydroxchloronique.

My doctor has advised 1x200mg for first two weeks and then 2x200 mg thereafter the two weeks.

I will be two weeks soon....and my sympyoms have not improved. I was told it will take 8 weeks to be effective.   Can I follow the Dermatologists advice a start 2X200 mg.   Are you on 2x200 mg - which I understand is safe.....I dont want to overdrug and find that I get into bigger problems.....However need to arrest these eruptions of skin rashes  ( a new area develops each day - now it has gone to my legs and between the waist and pelvic region)....and itchiness is intolerable... Thanks for the help

[Jogest in reply to MelbourneLupie]

Hi MelbourneLupie

I take one 200mg tablet twice a day, I do not have skin rashes my biggest symptoms were fatigue and painful joints which I still suffer from but not as badly.

The symptoms come in a 6-8 weekly cycle pecking every 6/7 months, I will then have a reasonably symptom free 4-6 week. I have other symptoms which the consultant and doctor do not think are related to my illness, but as I said I have been diagnosed with a auto immune disorder not confirmed as lupus as there was not enough markers.

John

[MelbourneLupie in reply to Jogest]

Thanks John....Thanks for the advice.   Pray you get better and lead healthy life.....

[GloomyEeyore]

I have been taking this for a year now. Prescribed by my rheumatologist who suspects seronegative lupus. Am taking two 200mg tablets for two days, then one 200mg tablet for one day on a repeating cycle. Have had no side effects to speak of. I did find the Quinoric brand bitter and they gave me acid for a short time after taking them. I now get prescribed Zentiva, (prescription has must be given as Zentiva on it), and have no problems whatsoever.

[Sarah74]

I have been fine with it for 20 years, however it may now need to be stopped as I have retinal changes....although extremely rare it does happen. 

Make sure you have eye screening once a year....this is how the changes got picked up...

[Tinajl in reply to Sarah74]

Thanks for the reply, my consultant sent me to get my eyes check after my last appointment before starting the meds I have only just found out I have sle after seeing numourous people and lots of tests been about 2 and a half years undiagnosed, I'm looking forward to getting started on something to help with the symptoms, hope u get put on a drug just as effective for you .

[MelbourneLupie in reply to Sarah74]

Hi Sarah

Were you taking it only for skin rashes and not for any other form of Lupus? 

I have been recently diagnosed with Lupus of Skin by a skin biopsy. All other results blood/urine have come clean. But I have had skin eruptions and unbearable itching the last 8/9 months.....Have been asked to stat Plaquenil 1 tab 200mg per day and increase it to 2 tablets in two weeks. Worried about losing eyesight. currently no issues with other organs or eyes.

[chrisj]

I've been taking hydroxy since 2005 and its suited me very well, kept my condition stable. I have mild SLE...I hope you get the same benefits xx

[Wendy39]

Hello. I felt very anxious about starting this medication when diagnosed back in 2013. Daunting prospect.  I wasn't on any daily medication before and it seemed huge. I did get a rumbly, noisey tummy for quite a while. I took one 200mg tab in the morning and one in the evening. If I don't take it immediately after food I take it with a small glass of milk. It cleared up some of my skin problems in 3 weeks but I would say I didn't feel the full effects of it for about a year. Make sure you have a full eye test before you start it. Tell the optician you are taking it. Get your eyes re-tested when they tell you. And if you get any eye issues go straight back. Luckily I never have. Couldn't live without it now. Good luck. 

[MelbourneLupie in reply to Wendy39]

Hi Wendy

Yes I too am on no other medication and it is daunting that they have asked me to go on hydroxychloronique - initially once a day and then 2 per day of 200mg.  It is really worrying the long term effects on the eye.....

[Sarah74]

I'm currently trying to obtain old notes as it was so long ago it was prescribed. I think it was for rash and to help,with fatigue. Do remember it is very rare to get retinal toxicity and its only if on very high does or taken them for many years. It's like a one in 5000 chance.

Just get your eyes tested every year...which you should do anyway as eye tests can pick up early signs of a lot of things 

[Roanna]

I have been on it for 15+ years up to last year and before that about 10 years on and off with plaquenel before they believed I was allergic to the plaquenel.  Not sure if the combination on the two play in toxicity or mid age with the blurring but I asked to get the field vision test done even though they said my eye exam was good.  I was informed in a few days that something was going on.  Sent to a specialist and asked to come back in 6 months for a retest. Nothing was really explained to me other than a follow up test was needed and I was told to stop the Chloroquin.  After two more visits with the field test being done, I finally found out that I have faint bulls eye focal point problems with my vision.  I'm waiting to go to my GP to get the results so I can read exactly what they call it but I was told the damage doesn't  repair itself like they use to believe.  Darn.  Only minor damage because I noticed it before it progressed, but I'm concerned because they still want to see me every 6 months which makes me think it could still get worse. Anyhow not meaning to scare you but do take the eye appointments very seriously.  They say build up doesn't really start, if, after the first five years of use.  The higher the dose, the more chance you have of the toxicity developing sooner.  There is a formula I found on line how to find out if the dose you are on for your weight is in a normal range.  I was on a small dose of 200mg a day.   I've also read that they have tests that are really good for diagnosis but the field test usually shows any concerns to be followed up on with more test.  Don't let the Optometrist get away with telling you that you can skip a year, or you don't need the field test every time like my past one did because that is the only thing that got my diagnosis and I had eye problems a year before my field test was sent on to an Ophthalmologist.  

     I have to say, the drug works even though it seems like it doesn't  because when they took me off the drug I didn't up my imuran like the Dr. recommended and I got a flare within a few weeks of dropping the drug.  

     I plan an doing a thread on my results and what to look for when I get my copy of the report so I can have accurate names of my diagnosis for others who want to be informed on what to look for.

  In all, I'm glad I was given this medication because it has helped me live a fairly pain-free existence paired with Imuran. On there own they seemed not to be as effective but paired they seemed to do the job.    Of course having too much of something is never good for that long as you need a tweek every once in a while to help you along.  I have lupus nephritis  but have had little joint pain until going off Chloroquin and am struggling with mild joint pain ever since.  I also have been taken off imuran due to poor blood counts but I had one great 20 year run at it.

Good luck to you all and when you notice difficulty focusing on writing for what ever reason, get it checked, its  not always in your head.

[maggielee]

Hi I have been on hydroxychloroquine 2 x 200mg for just over a year and it took about two months to really tackle my rash and get it under control and allow my skin to heal (it was quite extensive by this time).  I tried to reduce the dosage as instructed to 1 200mg per day last November as winter light UV was less, within a couple of weeks I realise that I was having achy legs and becoming very tired and realised it was the lupis.  Doc said to go back to the dosage I was on and it took another month at least to feel better, luckily no rash just feeling poorly.  My quality of life is much better with it, taking everyone advise and have annual eye check ups. 

I should mention that I had a little hair loss to start with, I have a lot of hair, I was not happy about this,  it did settled down, so assuming it was my adjustment to this medication.  Will take note of different kinds of hydroxychloroquine, may help to know folks are having different experiences with it. 

[Tinajl in reply to maggielee]

Thanks for your reply I have now been taking hydroxychloroquine for 2 weeks, I have been noticing hair loss hope it does stop soon, I am aching really bad and still taking lots of pain killers hoping this also improves, at the moment I am taking 1 tablet a day and in 3 months they will review it, feeling quite sorry for myself im 39 and feel like I'm living in a 90 yr olds body some time.

[maggielee]

Hang in there, it is a quite a roller coaster ride.  I came online tonight as I was feeling a little blue and it is nice to know that others are out there that can understand how you are and how I are feeling.  I hope you feel better soon and that the hydroxychloroquine starts to work for you.  Take care.