Hi everyone,
I'd like to hear from two or three people who take 300mg of hydroxychloroquine a day (or an equivalent dose).
We'd like to collect some views about whether a single 300mg tablet makes/or would make a difference for you.
If you're happy to chat about your experiences, please email me at paul@lupusuk.org.uk
Hi , I take 2 x 200mgs alternate days to 1x200mgs, I had an appointment on Tuesday and discussed the 300mg tabs the Dr didn't know they were available. Happy to help in any way
Hi PaulI take 300mgs hydroxy per day..400mgs one day n then 200mgs the next. It's a pain having to remember which days I take the evening dose n I have to mark them on the calender. Have spoken to go about BlackRock 300mgs but chemist can't get hold of them, so I'm told 🤷
My pharmacy tends to give Bristol brand too which tastes foul!! My ideal would be zentiva 300mgs per day in one tablet taken every morning.
Kat 🌈😽😽xx
I take 300mg per day in a split dose (200mg am; 100mg late afternoon) so a single 300mg tablet wouldn’t be useful for me. I wish hydroxy came in 150mg tablets so I would no longer have to split them!
Hi Paul Not sure whether this post is still open? If it is -- my wife has been on 300mg/day for 2 months now -- 400:200 alternate days. I mentioned to 2 X Rheumy Ddrs (registrar & consultant) that there was a 300mg available and both argued with me that there was no such thing. However, they did write to the chief Pharmacist about it (this was in November). I rang the helpdesk yesterday and the specialist nurse still had not heard of a 300mg tablet but when she checked their system that shows what meds are available the 300mg tab was listed there.The 400:200 system is tricky to administer as you cannot say (every Sunday I have 2X tabs) because every day changes on a week by week basis (ie Sunday 2X tabs one week becomes 1X the next week). Having said that and bearing in mind what has been said about adverse reaction to the fillers used by the different manufacturers, I wonder whether it would be best to change or stick with what we know.
Incidentally, on the same phone call yesterday with the helpdesk we were talking about the maximum recommended dose of hydroxy (as my wife is 54kg) and the nurse was using 6.5mg/kg. I am sure I have read somewhere that that has been changed to a max of 5mg/kg. I seem to recall it was the ophthalmologists that were recommending this to reduce the incidence of retina damage. I cannot find the article now -- do you have any ideas? Many thanks.
Hi BeeManShrop ,
Thank you for responding to this post and sharing your experiences. If you'd like to have these experiences shared as a case study then please email me at paul@lupusuk.org.uk
The rollout of the 300mg tablets across all UK trusts is taking time and many prescribers sadly are still not aware of them. A lot of work is being done by the manufacturer to try and improve this.
You are correct that the dosing guidance was revised from 6.5mg/kg/day down to 5mg/kg/day - however, there are always some exceptions where it is appropriate to continue a higher dose.
Hello Paul, I hope you are well
To give you an update that my Rheumy prescribed me Hydroxychloroquine 300mg on 24 June 2021 and Boots were able to source this for me, with BlackRock pharmaceuticals Ltd. Script was taken in on Sat 26 June, and we had text alert yesterday early evening to advise ready to collect *very good*.
We initially tried Lloyds pharmacy, not able to get in, or even the local hospital (I thought was strange).
I think it is to do with which Supplier's are used.
I come under NHS North Hampshire CCG
I will email you Paul, as more than happy 😊 to be involved in review. I will begin single dose 300mg Hydroxychloroquine with my evening meal today.
Best regards
🦋🌻
Do you HAVE to take meds?
