Hydroxychloroquine 300mg tablet: Hi everyone Just... - LUPUS UK

LUPUS UK

27,026 members23,104 posts

Hydroxychloroquine 300mg tablet

misty14
misty14

Hi everyone

Just wondering have you been able to access this new 300 mg hcq tablet from Blackrock pharmaceuticals ok?.

Keep safe and well.

MistyX

37 Replies
oldestnewest

Hi misty. Not yet but I am on a mission. I have managed to get the 200mg Blackrock and that took some time. At present my GPs don't have the 300mg on their register of drugs. They appear to be on the case though but am gently reminding them. Let me know if you have any success.

misty14
misty14 in reply to RosieA

Thanks Rosie, for your helpful reply. I've started the process asking the prescriber at our gp surgery and I don't think its available as I've not heard anything. I am going to ask my gp next. I have the email address for Blackrock Pharma as i was wondering to ask them about availability?. Would you like it?. What do you think about the idea?.

Could i ask what area are you in?. I'm in the Southwest.

RosieA
RosieA in reply to misty14

I think it would be a good idea to contact Blackrock. What's to loose! Funnily enough I am from the Southwest too. I'll let you know if I get any nearer success. x

misty14
misty14 in reply to RosieA

I'll email blackrock and let you know what they say. Rosie. Good luck for your gp, hope you get better news. Keep me posted. Im sure we'll get there eventually. Im further down in devon. Keep safe. Xx

misty14
misty14 in reply to RosieA

Hi RosieA I've had a good reply from my email to Blackrock Pharmaceuticals.

They have checked that the 300mg hydroxy tablet is now 'live ' on the NHS central drug database and therefore should be visible on GP and Pharmacy prescribing databases. Sometimes it takes a while for them both to pull out the most up-to-date data thru from this central database to their prescribing system.

He suggests asking our GP's again and if their are still problems they can contact Blackrock Pharmaceuticals thru customer services email and they will assist in updating their system. Email is customerservices@blackrockpharma.com

Pharmacists can order the product thru either Alliance Healthcare or DE Pharma (wholesalers). The Alliance Depot in Exeter which supplies the South west has stock of the product. It should be visible on their Alliance Portal Ordering System. If needed he's given me the pip code they need to order it. So, if you need this just let me know.

I'm going to email this reply to Paul at Lupus Uk as its up-to -date info for another fact sheet I think.?. It's interesting what we learn about these processes which i hope is helpful to you. I'll be asking my gp soon and I hope your successful with yours.

Keep well and safe. Xx

RosieA
RosieA in reply to misty14

You are an absolute star. Mission tomorrow is to nag GPs again. Feeling dreadful today and am sure that it is in part due to having to take 400mg of HYRX everyother day, 100mg above what I should take. Stomach is very tender to say the least. Let me know if you manage to get it won't you and I will do the same. Well done. I shall sleep contented. xx

misty14
misty14 in reply to RosieA

Sorry your feeling so rough Rosie. Im glad ive helped. We shouldnt really have to do this chasing when we're poorly. Good luck with getting it and ill keep you posted too. Take care. Xx

RosieA
RosieA in reply to misty14

Hi Misty, can you give me the pip code. Have phone appointment tomorrow with GP. x

misty14
misty14 in reply to RosieA

Hi rosie, the pip code is 123-9789. Good luck with your gp. Ive got phone appt with our surgeries pharmacist tomorrow. Hope we make it. Xx

RosieA
RosieA in reply to misty14

Thanks. Have phoned two pharmacies (including one attached to the Drs). According to both of them, the 300mg tablets are still not visible on NHS precribing system nor could they see them using Alliance wholesale - interestingly, they said that there was very low stock for the Blackrock 200mg. So frustrated. I hope you have better luck. Am not giving up though and have emailed Blackrock to ask for a reason why there appears to be a jam somewhere as certainly my tummy is less problematic with this brand. URRR, why is this so hard?

misty14
misty14 in reply to RosieA

Hi rosie, it shouldnt be this hard and we shouldnt be having to do all this. Its so disappointing but the guy who emailed me said if it isnt available hes willing to work with the dr's or pharmacists to sort it out. We'll gdt there eventually. Ill let u know how tomorrow goes. Xx

RosieA
RosieA in reply to misty14

Fingers are crossed. Are you spliting your dose at the moment? I find on the days I try to get two doses of 200mg tablets in with Omeprazole and Adcal twice a day quite tricky as there is meant to be a 4 hour gap between HYR and the others. x

misty14
misty14 in reply to RosieA

Hi Rosie, that must be hard to juggle. I take HQC every other day due to side effects and chop my tablets up to make the 300 mg which isn't always the right dose. This is why a 300 mg tablet would be fab.

omeprazole I take early am before breakfast once a day. I take the HDR at tea time. You might be taking too much calcium which also can make you feel rough. I had Adcal changed to Theicai calcium tabs and dose is only one a day. You might like to ask your GP tomorrow. Good luck and chat tomorrow. Xx

RosieA
RosieA in reply to misty14

Ah, interesting about the calcium. I'm on Aldendronic acid as I have low bone density and since I am now photosensitive I can't rely on natural sources of Vit D so maybe the reason but will check. I have started to link very wet weather with dreadful days - joints, nausea, fatique. It's a little drier today so am beginning to feel a bit better. I hoped the winter would be easier than the summer!!!!!!!!!! Blackrock have emailed back - they are willing to chat directly with dispensing pharmacy in order to resolve this! Great service. Better contact the pharmacy to check their OK with this as it's a small community and don't want 'oh! here she comes' attached to my name - ridiculous I feel. Also, GP needs to be able to see on his prescribing list.

I was asked by dermatology to go to 400mg daily until the winter. I mentioned that this was punching above my weight recommendation but they then said to reduce to 200mg over winter. 400mg gave me horrendous stomach problems. So 300mg should do the trick since I suspect I'm going to be on this drug for sometime to come. x

misty14
misty14 in reply to RosieA

Hi Rosie, how did your gp phone call go.?. Helpful i hope. Do you take steroids too as your on Alendronic acid.?. They can affect your tummy over time. I used to take it but had to switch to the infusion because my tummy rebelled!.

Ive had my phone call with the pharmacist at my surgery and she told me how they were struggling to access it and how complicated it was. I told her of my email result wit th Blackrock and she admitted she hadnt thought to email direct. So asked me to send it her so hopefully they will sort it eventually. Similar outcome to you really. Keep me posted if your prescribed it and ill let u know. We'll get there evengually. Have a good weekend. Xx

RosieA
RosieA in reply to misty14

Seems like we were writing at the same time! Blackrock will email your GP surgery directly if you wish to expediate it. I'll confirm success once it's in my hands. It certainly appears to be a popular brand. I've tried to taper the steriods and am now on 3 / 4 mg alternate days. Trouble is that although I can mosy around the house on this level, exercise of any form wipes me out and the brain fog /memory thing can be overwhelming. So, it's swings and roundabouts. Yep - steroids not helping the tummy situation but it is a little easier with the Blackrock. I can't eat oranges or anything very acidic at the moment without intense upper stomach pain. I have bought a yoghurt maker and am going to try and make it as I gather you can get some very good probiotic benefits!! xx

misty14
misty14 in reply to RosieA

You've done well with the steroids. Rosie. Im stuck on 5.5mg daily to cope with life. Withdrawal is hard Your so right about needing different levels of help for the different things we do. Just being at home is so differdnt to exercising outside. Good luck with the yoghurt maker. Xx

RosieA
RosieA in reply to misty14

SUCCESS!!! So they are difinitely available in the South West. I do so hope you get yours next week. Do let me know if you feel able and thank you once again for starting this thread. xx

misty14
misty14 in reply to RosieA

Im so pleased Rosie you've got yours. Gives me heart ill get mine and i'll let u know. You've made my day and im pleased to help. Keep well and safe. Xx

RosieA
RosieA in reply to misty14

Just wondering if you have been successful yet. Fingers crossed for you. x

misty14
misty14 in reply to RosieA

That's very kind of you Rosie, I'm having to chase my surgery tomorrow as heard nothing and my drugs list has not been changed. So annoying so I'll let you know how I get on. Hope your ok. Xx

misty14
misty14 in reply to RosieA

Hi Rosie, I've got success with getting the tablets. Yay!. Boots are ordering them tomorrow and I should have them soon. Big relief. Hope you've been ok taking yours?.

I saw your post about the confusion of being UCTD diagnosed. Its not easy getting your head around these different conditions. I'm UCTD too and have been for many years. How long have you been diagnosed?.

keep safe and well Xx

RosieA
RosieA in reply to misty14

Fantastic news. Yay. I am so pleased. They are certainly helping my tummy. It's only just been discussed in the last few months but since then I have become photosensitive with malar rash and ulcers. So am firmly holding my breath. xx

misty14
misty14 in reply to RosieA

Thanks so much Rosie, i wont believe it until i see the pills with my own eyes. I do hope the hcq really helps you. I have found its taken my rashes away. Glad its helped your tummy. Keepwell and safe. Xx

RosieA
RosieA in reply to misty14

Hi Misty, have just been phoned by my pharamcist- looks like I might be getting the 300 mg tablets this afternoon. Yippee. Hope you are successful too. x

misty14
misty14 in reply to RosieA

Oh thats fantastic Rosie. So pleased. I think mine will take a bit longer to sort but hopefully i will next week. Ill let you know. Have a good weekend. Xx

300mg HCQ now available inUK:

healthunlocked.com/lupusuk/...

Hi Misty, I haven't tried. I am still taking 200mg twice daily. What is the thinking behind 300mg? Would that be to take 300mg daily? Keep well + stay safe x

misty14
misty14 in reply to loopy-lou

I can't take 300mg everyday so its every other day due to side effects and have had to chop up tablets to get the dose which is not ideal. This will make such a better difference. keep well and safe. Xx

loopy-lou
loopy-lou in reply to misty14

I hope you manage to get it. It sounds like it will be so much easier for you. Take care xx

misty14
misty14 in reply to loopy-lou

Thanks loopy-lou, im sure given time i will get it. Im going to email blackrock and see what they say so will post again.

You take care too and be safe. Maybe it could be a compromise dose for you?. Xx

The “thinking” seems to be more choices for cutting down eg from 400mg/day to 300mg/day rather than straight to 200mg/day or having to split or cut tablets?🤔 which is problematic.

According to Paul they are available now or should be,

so GP practices should be able to do this rather than constantly fobbing patients off!

Worth having a look at Lupus UK info leaflet above @Newby12

loopy-lou
loopy-lou in reply to Ickybicky

Thank you. I had read something regarding dose should be according to weight. I have been left on 400 mg for the past 13 years or so. Interesting

Ickybicky
Ickybicky in reply to loopy-lou

Yes, absolutely.👍

Dosages for HCQ must be followed strictly.

Mine are prescribed by expert hospital consultant doctors NOT my GP and with practice lockdown we’re all suffering to get expert advice including being weighed?🤔😢(See below).

According to the BNF:

“...it must be administered on expert advice,

Adult: 200-400mg daily, daily maximum dose to be based on ideal body weight; maximum 6.5mg/kg/day.

Overdose: “Hydroxychloroquine is very toxic in overdosage...life threatening features include arrhythmias and convulsions...etc”

There are other side effects...

from BNF 2015-2016 pp894-895

Take care, keep safe, keep challenging and keep happy! These covid lockdown times are presenting all sorts of disease management problems for us lupus patients and other AI sufferers😢

Xx

misty14
misty14 in reply to Ickybicky

Thanks for all your helpful info ickybicky. I hope your keeping as well as possible in these challenging times. Keep safeXx

loopy-lou
loopy-lou in reply to Ickybicky

Thank you so much for all the information. It is quite concerning re side effects. I suppose I have just taken it for so long but without any apparent side effects. I do worry re eyes as my eye sight isn't as good as it used to be. I was originally given it by a consultant not the GP. I totally agree with you, disease management currently is extremely difficult. I have been relying on my GP by phone. Take care + stay safe xx

Barnclown
Barnclown in reply to Ickybicky

Yes: my LUK Lupus Centre of Excellence Univ Hosp rheumy immediately switched us onto: 200mg & 400mg alternate days...= an average of 300mg...I’ve been on this protocol ever since the new hydroxy monitoring guidance came out & have noticed no diff: my Zentiva brand hydroxy is just as effective as ever 👍❤️🍀 Coco

You may also like...