Anyone else taking Hydorxychloroquine above guidelines for weight.

[RosieA]

After 18 months of taking 400mg of HYX (100mg above recommendations for my weight) I have been asked to reduce dose to 300mg. I was put on 400mg to get my disease under control.

Three weeks into reduced dose I have started to get malar rashes (not had one under 400mg management).

I wondered if anyone else was also taking a higher dose than that recommended and if so were they having more eye tests etc to detect any very early HYX deposits in the retina. Or other protective measures.

I will be contacting the Specialist Nurse team at Rheumatology - perhaps a 300mg/400mg alternate days might fit the bill!

With thanks, as always.

[JenniferW]

I was on 400mg for about 5 years, I weigh about 8 stone 2, they reduced it after Orencia got things under control to 200mg. I just had yearly eye tests at a good opticians who took care to do a thorough exam. They seem to worry more about hydroxy more, I think they have found there is a very small chance of permanent damage. I don't bother worrying, there's enough other stuff that can go wrong with us!

[Occasion99 in reply to JenniferW]

Totally agree !

[RosieA in reply to JenniferW]

Thank you, I agree. I think more modern testing has found that the incidence of retinal damage is higher than originally thought, which might be driving the plan to reduce the dose. I do however find the disease is better managed at 400mg. It is a balancing act. xx

[Occasion99]

Hi Rosie..I am taking 400 mg and have been told I should be on 200 mg and probably this has been the case for the past 6 years! I’ve never had a problem with my eyes and am due another eye test in December. These are usually annually.

Not very reassuring to you..just wanted you to know you weren’t alone .

I tried reducing the hydroxychloroquine but found the return of my symptoms too much so I guess I’m taking a chance and hoping my eyes are fine.

It’s always such a fine balancing act between symptom control and side effects isn’t it?

Good luck and hope you find what suits you 😊

[RosieA in reply to Occasion99]

Thank you. Indeed it is a balancing act and your experience mirrors my own. I think, if it is a significant risk I will seek to have the eye tests that only the hospital can perform .xx

[marypw]

Yes I take 400mg a day and should probably be on about 300mg a day (haven’t calculated the dose recently). But I feel worse when I reduce the dose so I stay on 400mg.

I recently went for the new special eye scans at a private hospital in an industrial estate in Watford- paid for by the NHS and I’m supposed to be getting those every year. I can t remember what they’re called, but they are more detailed than the standard OCT scans you get at the optician.

It was interesting to meet so many lupus patients there, all from the East Hertfordshire and West Essex area!

[RosieA in reply to marypw]

Thank you, like yourelf I do feel significantly worse on a lower dose. It's great that you have had the eye tests you describe as I gather they can detect eye problems, if there are any, at their very earliest. x

[KnitSewPurl]

Hi RosieA,My dose i take is 200mg /400mg alternate days. I have been taking them for quite few years now and have been quite stable with that.

I do have regular test with my eye consultant at the hospital who does full eye test because I have macular Not from Hydroxychoroquine but because of genetic condition. I have it in both eyes.

Also have regular eye checks at my local opticians as well about every year.

Hope this helps .

[RosieA in reply to KnitSewPurl]

Thank you. I am so sorry that you are also dealing with Macular as well. It is certainly clear from all the posts that regular good quality eye testing is the key to keeping as safe . x

[soul22]

Hi

I was dropped to 200 mg I ask. Why can't go back to full dose 400 mg as way more effective.

Said ban on full dose due to several patients going blind.

That was rheumatology consultant update

I have no eye. Issue on it long time

[KnitSewPurl in reply to soul22]

I have not heard of such of a ban as I have been on 400mg before for a weeks. Then switching back to 200/400mg.

There is no actual report to verify of a ban if you can produce a report would be good but there has been reports of Hydroxychoroquine claims of toxicity which is why they do the test regularly to check for toxicity. I don't think many places have the facilities to check for toxicity or know how to check for one. The hospital that I go to do the test .Going blind is not over night it comes over a period of years . They say that after a period of usage of 6 years or more ,they don't tend to see any signs of toxicity. As for going blind This can be many issues such as diabetes, steroids, and many other factors not just Hydroxychoroquine.

One of the things that can cause is macular it will not make u blind. I have had macular since I was 42 ,I am now 53 now , over the pass 11 years it started from 1 eye then both eyes . It hasn't stopped me from doing things l love like baking knitting and sewing and quilting. Yes , I have to change my glasses often that is the price I pay. I had cataracts in both eyes , they removed one and damaged my eye- my corneal in that process. But it still hasn't stopped me from doing things that I love .

Do things what you love use your eyes and hands use them to the full.

You only get this life use them with good use.

[soul22 in reply to KnitSewPurl]

Well I wish let me have 400 mg kings refused due number patient they say gone blind been on it since 2009 no issues eyes.

[KnitSewPurl in reply to soul22]

Protocol is you start on 400mg for 3months then they gradually taped down to 200mg . This depends on the severity on your SLE. I hv been on mine since 2010.

Through out my treatment I hv gone up to 400mg for a few months when I hv been bad.then taper down again to 200mg now on a stable dose of 200/ 400.

Apart from my macular ( genetics) and cataract. No other issues

[soul22 in reply to KnitSewPurl]

Well I'm bad they won't budge on 200 mg is all allowed.I was so much better on 400 mg

[RosieA in reply to KnitSewPurl]

The latest UK guidance I have read, suggests a dose of less than 5mg per kg of body weight. This would mean that I would have to be on no more than 300mg. Just hope that symptoms don't get any worse as body readjusts. Having things we love to do is so very important, I've taken knitting up again along with needlepoint and I am determined to keep playing my classical guitar, All these keep me sane in the long summer with my photosensitivity. x

[KnitSewPurl in reply to RosieA]

Hydroxychloroquine for patients within adult services - NHS England england.nhs.uk/wp-content/u...

This is the UK guidelines of Hydroxychoroquine. Maybe you need to have a chat with your Docs and come with some options on how to maintain your SLE to get it to be stable

Hope if will be of some help

[RosieA]

Thank you. Gosh, I didn't know about the ban but was aware that there is renewed awareness of the risks of retinal damage with higher than recommended doses of Hydroxychloroquine. I am glad that you are problem free in that area. x

[LalSD]

My daughters both take it as 400 after reducing to 300 and experiencing lupus activity. Alternate is also tried but was not enough to keep desiase activity. Hope this helps.

But my daughter was informed that her eyes were being affected. I asked for the proof, but the consultant was not able to provide it. I understand the possibility and the blindness side effect but very sceptical about all doctors across UK suddenly talking about this side effect. She is taking full dose until her heart is resolved.

[RosieA in reply to LalSD]

Thank you for your response. Yes finding that sweet spot with meds is so important. I will without doubt have to return to 400mg in the summer to cope with the UV levels. My photosensitivity was out of control on 300mg.