Dropping Hydroxy

[Hoffster1984]

Hi all,

I have had RA for nearly 5 years. All going great and managing it really well.

I have been advised that I can stop the hydroxychloroquine now. I am on methotrexate once a week and folic acid.

Anyone else on the name drugs and then stopped hydroxy? Any symptoms creeping in or anything else?

Thanks!

[Bookworm55]

I was taken off hydroxychloroquine nearly 3 years ago due to eye problems and can honestly say I didn’t notice any difference! My RA is very well controlled and I’ve been on 12,5 mg of methotrexate since 2016. I was put on sulfasalazine as well a year or so back and again no difference!

[Chockyuk]

I stopped taking it about 8 months ago, only take Mthx now and it’s made no difference really. I have digestive problems and Hydroxy made it worse, so in that sense I feel better. I’m sure it won’t make too much of a difference for you 👍

[Garnacha]

When I started MTX in November last year I was told to stop hydroxychloroquine, I’m also taking 90mg etoricoxib, within a few days I was in a lot of pain affecting not only the usual joints but lots of others too, I was told to restart it again. Wasn’t sure whether to comment or not & fingers crossed 🤞 you’ll be ok

[Nik8210]

am wanting to drop it

[nomoreheels]

Sounds like your Rheumy is hoping the MTX alone will keep you controlled, no bad thing taking fewer meds, the ideal way of treating if disease activity allows.

I can't really give experience of HCQ & MTX together as I stopped the former not long after starting the latter. I have been on MTX for nearly 12 years though at various doses. In that time, specifically in the last 5 years, I've also tried double therapy with MTX/sulfasalazine & MTX/leflunomide but both had to be stopped so I remain on MTX alone. Hopefully that will be all you need too. You may find you will need a dose increase but it's not a given, that's only my experience.

[Notknitting]

I am taking HCQ. I stopped taking MTX and folic acid because I could not tell the difference and still had pain. I am also taking Enbrel now.

[Deniseelk]

So I guess if I were you I would ask why your specialist is suggesting stopping Hydroxychloroquine ? You say your RA is under control but why stop it then as surely your medication combination is working for you. To answer your query though, I wanted to stop my Hydroxychloroquine as I had been taking it for around 5 years but for no reason other than feeling a little concerned whether it would start to affect my eyes ( my yearly checks have always been fine though). I was also taking Benepali and generally felt my RA was being held reasonably well. My Rheumatology nurse was not happy to entirely stop it and we agreed to halve the daily dose down to 200mg. She did state that it is generally felt that Hydroxychloroquine really helps with the RA fatigue. All I can say is 3 months after the reduction I had the worse fatigue hit ever... I was floored... I don’t recall specific joint pains but did have whole body muscular type strong aches. I just could not function. I went to my GP several times as didn’t want to just assume it was RA related and undertook many many different types of tests but only a slightly low Vitamin D Reading came to light. I went back to 400mg Hydroxychloroquine daily and I did get back to my old, fairly under control RA self. I seem to recall I was so fatigued for around 6 months. I understand Hydroxychloroquine stays in the body for quite some period of time and seems quite likely why the fatigue didn’t hit me for 3 months. Do get this clarity from your Rheumatologist and perhaps a plan if you find lowering or stopping your Hydroxychloroquine puts your RA recovery back. Would be very interested to hear your final decision and how you get on as I am sure I am not alone in not wanting to take any unnecessary medication. Best of luck.