Hydroxychloroquine

[Seren65]

Hi All,

I haven’t posted on here for ages . Hope people are keeping as well as they can be, both physically and mentally during lockdown.

I was finally diagnosed with Lupus SLE and Sicca Syndrome at the start of this year . I have been on hydroxychloroquine since January. I do feel it’s helping with symptom control particularly fatigue and joint stiffness. I take it Monday to Friday with a break at weekends. I was just wondering if people on it experience a dip in symptom control at weekends or is it just psychological on my part?!!😂

Thanks for reading this. Stay safe x🌈

[whisperit]

Hello Seren65

I've never heard of a weekend break in HCQ dosing. Was that your rheumy's suggestion? What is the rationale? x

[Seren65 in reply to whisperit]

Hi Whisperit,

Yes , it was the Rheumatologist who prescribed it in that way . I take it Mon- Fri and I presumed that’s what most people did . I’m not sure what the rationale is behind it .

X

[whisperit in reply to Seren65]

Thanks. I wonder if thats a long term regime; people opften start off on (say) 200mg before moving up to 400mg (some just stick on 200 of course). be interesting to hear if anyone else has a part time regime

[SashaT64]

I take 200 mon, tue, weds & thurs then 400 fri sat & sun. Not currently doing anything for me - wonder if I’ll go up the 400 7 days a week at next review

[Seren65 in reply to SashaT64]

Hi SashaT64

I’m on 400mg daily as I say for the 5 days . I presumed only for 5 due to the potential for eye problems. I am noticing a difference now - so glad I’m finally sorted( well for now anyway!)

Maybe they will make a change at your next review. They may have started you off gently to see how you tolerated it x

[miccika1]

Interesting. I also never heard of a weekend brake. Im wondering how good that is considering the same level of medication is usually preferred to be in the body. I don't have weekend vs workday difference in symptoms, although u usually feel better over weekend since I dont need to work.

[Seren65 in reply to miccika1]

Hi miccika 1

Thanks for your input. I’m due to have a review next month so will ask what the thinking is behind it . X

[Ruby3333]

Hi I was on that medication for about 3 years didn’t help me at all in fact since I stopped it got better I’m not on any meds now for lupus but I do get rashes on my arms now so dr saying now might have to go on meds dreading it stay safe xx

[Seren65 in reply to Ruby3333]

Hi Ruby 3333

Sorry to hear that it didn’t help you . I do definitely think it’s helping me now but never feel quite as good at the weekend. Hope the Dr can sort out your medication . Stay safe x

[nanleighh]

Hi Seren65, Hydroxychloroquine has a very long half life, So skipping two days your blood level will remain almost the same. I’m not sure why your physicians are having you stop at the weekends, most of them have to take it every single day. You take care and I wish you luck with your journey🍀XNan

[Seren65 in reply to nanleighh]

Hi nanleighh

Thanks so much for your reply - I did wonder whether the levels stayed fairly constant . I think it may be that I try to catch up with everything in the house and garden and I’m maybe doing too much ! X

[nanleighh in reply to Seren65]

We all forget to be kind to, and take care of ourselves at times. We are so used to doing for others. I had to learn after my diagnosis myself to stop and rest. You take good care. Nan

[Seren65 in reply to nanleighh]

I am realising that now .🙁When the fatigue is overwhelming particularly if I’m having a flare up, I have to have a “Mum nap”! I can’t carry on otherwise. It’s hard to do when my job is working with special needs children and I’m a divorced mum of four (All adults but still living with me ) . My children nag me to rest !

Take good care of yourself too x

[harmony2 in reply to Seren65]

#nanleighh and

#seren65

Yes, long half life. For example Dr’s say can take 6 months to notice benefits.

Yes, that’s probably about your activities on weekends. Research “spoon theory” and “pacing”.

Blessings of strength, perseverance, wisdom and rest!

Harmony2

[miccika1 in reply to nanleighh]

How does that work? If half life is 40 days why don't we take it once a month instead of two times a day?

[nanleighh in reply to miccika1]

Because you have to keep the levels up or you won’t have the optimal benefit. I think the half life is 29 days. And it stays in your system for several months but to keep a therapeutic level you would have to get the blood level up to where it needs to be and then continue it daily or almost daily. That’s why I said missing a couple days a week once it has been established wouldn’t hurt but only taking it once a month would never get to a level in your blood that would be therapeutic. Take care.

[Jackpot67]

Hi Seren65,

I have taken this for the last 5 years, every day was taking 400mg daily, then upped to 800mg for a year but now back down to 400mg per day due to new guidelines. I have tried stopping medication as a trial but had horrendous flare ups so back on it, it works for me 😊I have a yearly eye checks as recommended by my consultant. Maybe it's because you have eye problems that your on 5day course? Keep well, Jackie

[Seren65 in reply to Jackpot67]

Thanks for your reply Jackpot67

When I have flare ups , it does affect my left eye with trigeminal neuralgia so that may we’ll be why he’s done it. I do think it is definitely helping me though. Take care x

[harmony2 in reply to Seren65]

Uk royal college of ophthalmology has recommendation re HCQ