Hydroxychloroquine Lupus - Reduced

[Heal-]

Hi - I was looking to see if anyone else has been negatively impacted when reducing Hydroxychloroquine. I have had Lupus since 2014 and it's only been just over 12 months that I have been taking 400mg of Hydroxychloroquine daily. 2 weeks ago i was asked to reduce it due to my weight and now I am on 400mg one day and then 200mg another. Since I have reduced it, I have been feeling really really tired suddenly, nauseous, churning stomach, a jittery feeling and occasionally out of breathe. Has anyone else experienced anything similar? Really difficult to pin it down to this, seasonal change or Covid-19!

[Biddy47]

Hi Jess, I certainly felt much worse when my Hydroxychloroquine was reduced but not to the same extent as you, although the dosage was much lower. I was on 200mg one a day but because I had stabilised my consultant dropped it to 5 days a week. I felt I had gone back to square one. To be honest It didn't occur to me that it was because of the drop in Hydroxychloroquine (I don't know why I didn't connect the two) Anyway when I saw him again he put me back on the original dose and I've been fine.

I hope that this helps.

[Heal- in reply to Biddy47]

This is really helpful - thank you for sharing! I do want them to increase my dose again but then I’ve been told that if I don’t feel well on a lower dose they’ll introduce something new. I haven’t had children yet and not sure how this will work.

I hope you’re well ☺️

[Kelbol1]

Yes I had lots of problems when They reduced dose. I contacted consultant and they put me back to original dose - since then started having bad flares so they put me on mycophenolate as well and then asked me to reduce the hydroxy once this was working. Reduced to 200mg from 400mg and I have started have major dry mouth issues and sinusitis problems again - sure it’s related!

[Jules23 in reply to Kelbol1]

Hi, I am on 600mg daily. Got reduced to 400 and was hospitalised with pliers at and plural effusion. Not nice. Back on 600 but know I cannot stay on this forever. Very nervous about any further reduction, sometimes you do not know how much it is helping until they take it away. Hope you feel better soon.

[Jules23 in reply to Jules23]

LOL supposed to be pluerasy before people think I have a new illness involving pliers 😂 xx

[Heal- in reply to Jules23]

Lol I did wonder how come I’ve never heard of plural condition! Thanks for sharing and absolutely I literally had no idea a small change to my meds would have such an impact

[Heal- in reply to Kelbol1]

Thank you!! This is so so helpful! And I’m really sorry to hear that you are having other symptoms again! I hope it passes soon.

I’m waiting till Monday when the clinic is back open to contact them again as I found a rash on my arm after a long time last night and I felt so frustrated as it’s all happening since the reduction of the Meds!

[heda123]

Hi Jess. Everytime the rheumy reduces my hydroxy I always get worse and we have to go back to 400mg. Insist that you go back on it. You must have a helpline or email address for the nurses which you can email the doctor. I'm on 400mg and even then my Esr levels are still rising instesof dropping. Sometimes you just want this whole thing to disappear.

[Heal- in reply to heda123]

Hey!! I’ve left the clinic a message to call back but the opening hours are Monday - Friday. Clearly I need to find out who I need to Ck tact over the weekend.

My consultant was adamant he won’t up my dose again due to the risks to the eyes long term but instead would introduce a new medication .

Sometimes I don’t know what s right or wrong as I feel better with just 400mg of Hydro.

I used to see David Jayne in Cambridge - not sure if anyone else has on here??? I really liked him but then as I settled I was referred to someone in Manchester so it’s closer to home. But here I see a mix of different consultants and not been able to establish a relationship with one.

I agree - if only we could close our eyes make a wish and it would be gone!! Instead we just need to manage it xx each day as it comes!!