Hydroxychloroquine

[Yozzer]

Hi everyone just wondered if anyone can give advice I have been on hydroxychloroquine 400mg daily now for 8months my symptoms have improved slightly but still struggling I thought by now I would be symptom free any advice xx

[Tulipano]

I Have only been on hydroxychloroquine for two weeks and I haven't noticed my improvement actually I am worried about the side effects. Can cause problems to your eyes. X

[soootired in reply to Tulipano]

2 weeks isn't long enough. It takes time to build up in your system - if you read the information leaflet it says 12 weeks I think. - and with me it was about 10 to 12 weeks before I noticed a difference although maybe I felt a slight improvement after a couple of months.

As for the eyes, there were people on higher doses for many many years who developed eye issues in the past. Today it is still considered one of the safest medications and also the most effective for our conxitions. It's now very rare for eye problems associated with it.

I find it causes reflux/heartburn with me so take it with my main meal and take lansoprazol to protect my tummy.

Stick with it and I hope you see an improvement in a few weeks. 😊

[Yozzer]

Hi Tulipano

Yes I have heard you have to get eyes checked every 6 months I had been on hydroxychloroquine for maybe 5months before I had any improvement it's so frustrating having to wait so long for the meds to work

[MissFG]

I've been on it since march and had some improvements to my fingers and joints but requested a higher dose last week. This was turned down as I now have another overlapping disease so think the medication they given me as well as the hydroxy is supposed to help.

Maybe you need a higher dose?

[Treetop33]

I've been on it for 3 months, and basically I'm still being held by the Pred. It may be doing something but very unclear. Some people say it's only when they come off it again that they realise what it's been doing.

[whisperit]

Hello Yosser,

I would be quite surprised if after 8 months the hydroxy is not doing its thing, so I wonder whether you need additional treatments - especially as I see from you last post that you have "every symptom going"!

Are you taking any other medications - the obvious one would be predisolone or another steroid?

After 4 months on hydroxy plus 20mg pred, my main presenting symptom of shortness of breath was completely gone. Since I am now down to 4mg pred and my sob has not returned, I imagine that the hydroxy has had a fairly big impact for me.

So I wonder if you would benefit from a review of your ongoing symptoms and meds, and perhaps a repeat look at your blood picture. That may show whether the hydroxy is working to modify your immune response and the problem is elsewhere?

Hope you feel better soon x

[Paul_Howard Partner LUPUS UK]

Hi Yozzer ,

I'm glad to hear that you have experienced some improvement with the hydroxychloroquine. It is worth persisting because I have heard of cases where it can take closer to 12 months for the full effect to be noticed - this varies between everyone.

In some cases hydroxychloroquine by itself may not be enough to adequately control the symptoms of lupus. Are there any symptoms in particular that are bothering you most? It is worth discussing this with your consultant and seeing whether any additional treatment may be required. This can be a delicate balancing act as other treatments can require closer monitoring and may potentially have more side effects.

[Yozzer]

Thanks for you reply I have a few short courses of pred in the last 12months and they work wonders I have my 2nd appointment with prof Bruce at the royal in Manchester next weds so I am going can he add anything in I am struggling so much and I'm sick of putting a brace face on things all the the time I am a very positive person and try so much for it not to get the better of me x