Hydroxychloroquine medication

[Buttsy]

Hi, Good Morning,

My Rheumatologist as just asked the pharmacy to prescribe me Hydroxychloroquine, to see it will help with joint pain and Sjogrens symptoms, he wants me to trial it for 6 months. The pharmacy Has prescribed me the first 3 months supply then my GP will prescribe if it suits ,I am to have a review after 3 months.

The pharmacist explained dosage is dictated by weight. So she as prescribed 2 daily Monday-Friday and 1 daily Saturday-Sunday ? Seems weird different doses different days.I also take Gaviscon 4 times a day and have been told these interact and to make sure I take them 2 hours apart .

My question is does anyone else have funny dosing like this?

in other people’s experiences, have you had side effects and to what degree?

Thanks for reading and being there 🙂x

[Krazykat26]

Yes I take Hydroxychloroquine..I first started on 400mgs daily so one in the morning and one in the evening every day. Then after symptoms started improving my doc reduced it to 200mgs per day but symptoms soon returned so my doc decided to prescribe 300mgs per day. There is only one drug company that make 300mg tablets and that's BlackRock. I found it impossible to get the BlackRock brand. So I now take 400mgs on Monday, Wednesday and Friday and 200mgs on the other days and over the space of two weeks that equates to 300mgs per day. 😹It was confusing at first but I did get used to it...eventually!

[Buttsy in reply to Krazykat26]

Thanks for your reply KrazyKat,

Glad to hear that the Hydroxychloroquine helped your symptoms, thats my hope. I know the dosing go off weight so is different for everyone.Yes I will get my head round it .🙂

[Krazykat26 in reply to Buttsy]

You're welcome.did u doctor tell you to get your eyes tested? It's important for us to have a base line test before starting hydroxy and then every year or two years to check your eye health. Hydroxy is known to cause possible eye problems.Be patient with it because it does take up to three months to build up in your system so you probably won't get immediate relief.

The reason why your pharmacist said about gaviscon is because we can't take heartburn meds alongside hydroxy. When I started taking it in 2017 it did cause me to have heartburn although I don't suffer with it normally so with my doctors permission I now take it along with my other meds with a glass of goats milk.

Lastly..some people have gastric problems with certain brands so if you do you can ask to switch brands. Zentiva seems to be gentler on the stomach.

Best of luck to you. I hope it helps 😊

[Buttsy in reply to Krazykat26]

Hi ,

No they asked when my last eye test was and apart from dry eyes everything was okay, I had my last eye test before Christmas and get it done every couple of years, so they didn’t say I needed one till I have been on it ,5 years then she explained I would be referred for specialist testing at the hospital.

So did you get yours tested at the normal opticians or the hospital ?

Pharmacist said I can take gaviscon but at least 2 hour after Hydroxychloroquine and at least 2 hours before.so will have to time that right as I usually take Gaviscon 4 times a day .

Thanks, for the heads up re brands. I often have to take alternative brands due to stomach issue in general.

Thanks 🙏 again

[Krazykat26 in reply to Buttsy]

Oh right ok well that's good you've had them tested recently ☺️ I still have my eyes tested at the opticians . I have secondary sjogrens too. I went to the opticians just this week and have been told I'm good for two years.

[Buttsy in reply to Krazykat26]

That’s good news then ! 😀

[Kwenda]

While hydroxychloroquine is generally well-tolerated, long-term use can potentially lead to muscle and tendon issues, including tendon rupture, and patients should be monitored for these complications.

Do some research as tendon damages are well known.

Dick

[Buttsy in reply to Kwenda]

Thank you, Dick,

I will look into that side effect, the pharmacist didn’t mention that as a side effect.Always get helpful feedback on this forum .🙂

[Puffins17]

Hi I've been taking 200mg/400mg Hydroxychloroquine tablets daily on alternate days for over 5 years without side effects. For me it's been a ' life saver ' so I hope your trial works well for you. I was told when first prescribed that very rarely it may damage the Retina of the eye and I'm now annually monitored by my local Eye Hospital for this. My Rheumatology consultant has told me that he's never had a patient who has been effected in this way. Thought I would mention this as you may want to bring it up with your Rheumatologist if not already discussed. Good luck with it all.

[Buttsy in reply to Puffins17]

Thanks Puffins17,

Thats encouraging to know, I have been aching more and more and now Sjögren’s symptoms on top of everything else , so some relief would be great.

Yes I will bring up the annual monitoring at eye hospital next time I see the rheumatologist.

Have a good day 🙂

[NZHeather in reply to Puffins17]

Oh Puffins17, you wrote exactly the words I was going to type, exactly the same for me. 🙂

[Atu8]

I split pills and just take 1.5 each day, too hard to remember to alternate for me. It does seem to have helped with pain in my hands. Definitely get your eyes examined.

[Buttsy in reply to Atu8]

Thanks , I have had them done recently and will make sure I request regular checks. Glad it helps you 🙂

[Jaq1971]

I take 400 mg a day and miss a dose on a Sunday I started on 200mg a day then 200 one day and 400 the next and now its been upped again hope this helps x

[Buttsy in reply to Jaq1971]

Thank you Jaq 1971,

I appreciate your reply.🙂

[cheeselover342]

I have been taking Hydroxychloroquine for over 5 years with no issues (one 200mg daily). I did have an initial base line eye screening at the eye hospital and then one each year or so. However at my last regular optician appointment, she picked up a slight anomaly with my retina. I mentioned this to my rheumatologist and I was referred back to the eye hospital for more complex tests (rather than the annual toxicity tests which had been fine). This picked a slight anomaly with my retina and the consultant ophthalmologist advised that I stop the Hydroxy as I had been on it for over 5 years, with advice to monitor my condition and report back to my rheumatologist. He copied my GP as usual, as well as my optician so I hope I have all bases covered.

Very interesting to read about the possible issue with tendons. I had not heard that before and in the past have had Achilles tendonitis so perhaps a good idea that I stopped Hydroxy.

Hope that info helps.

[Buttsy]

Hi cheeselover ,

Thanks for your reply, yes that may show some correlation with your tendon troubles.

I will speak to my rheumatologist re eye monitoring.

Have you been prescribed an alternative medication now you have stopped taking the hydroxychloroquine ?

Take care

[KathleenMary]

I just take mine . Monday to Friday and can't really say I've had any side effects.Just wish the tablets didn't taste so horrible

[Buttsy]

Thanks for your reply, Yes , I took my first one yesterday and said to my husband how horrible they taste .

Take care