Apologies for not answering your questions on Zentiva last week, I was on leave and just got back today. I've updated our article on the availability of Zentiva after speaking to them today. You can find it here: lupusuk.org.uk/update-on-av...
The key things are:
- Zentiva is now out of stock, and they are still not sure how long the supply issue may last. They do expect to have a limited supply in a few weeks, but were unable to be more specific than that.
- They are working with suppliers to reserve stock for people who are specifically prescribed Zentiva. It does not matter what your diagnosis is, just that you are specifically prescribed this brand. (The last article suggested it was only people with lupus, but I have clarified with them that diagnosis does not matter). However, again, they were unsure when this mechanism will be in place, as it is dependent on stock being available.
As far as we're aware, the information on the Blackrock and Bristol brands is the same.
I understand this is probably not the update you wanted, and that it can be very stressful trying to get prescriptions filled and not knowing if there will be supply. We will keep in touch with Zentiva, Blackrock, and Bristol so we can give you updated information whenever we can. We are also trying to see if we can find out any more about the difficulties people are having with the 'pod' system not allowing pharmacists to order specific brands (as the system should be allowing this).
If you have any questions, feel free to comment here or email me. I am now back from leave so should be able to respond more quickly.
Take care
Debbie
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So, the manufacturers are refusing to give you any info re the cause/es underlying this supply problem, eg is it a manufacturing prob &/or supplies are being redirected/diverted elsewhere &/or a drug safety issue &/or what? 🤨
Hi Barnclown. It sounds like there's a supply issue with the active ingredient, but Zentiva aren't sure themselves what's causing it. It basically means they're unable to manufacture tablets until they can get more of the ingredient. We've asked them to keep in touch with us, so hopefully they'll get to the bottom of it and then there'll be a clearer idea of timescales.
The active ingredient is hydroxychloroquine sulfate, and this is the same in all brands of hydroxychloroquine (it's the fillers they each use alongside it which are different). At the moment, other manufacturers like Blackrock are not reporting shortages, so it may be that it's a particular issue with the suppliers that Zentiva use (though that's just a guess).
I'd be happy to help with finding out about the suncream prescriptions if I can. Are you having difficulties getting it on prescription or finding a particular brand?
My GP refuses to prescribe high factor SPF for my Lupus, saying the Primary Care Trust in the area I live will not fund it. Secondary Care will not prescribe it either & if they request GP to prescribe it for me, I can’t get it anyway!
I simply buy my own as I cannot be without it & wear it all year round.
I don’t get free prescriptions, pay for a PPC so being able to get SPF on prescription would save me £££s!
Turquoise I just sent a message to my GP on the NHS app. Asking to know why it was refused when on the Lupus NHS link nhs.uk/conditions/lupus/ it clearly says we are entitled to. I sent the link and a screenshot and after that they called me to tell me it has been prescribed.
I did actually read about it a while ago on the NHS website & it has been my intention to raise it with my GP. I will get around to it, thanks for the reminder 😃
The thing is, the surgery I go to, now has lots of AMPs, (Advanced Medical Practitioners), they are from various backgrounds, eg physio, mental health nursing, paramedics, general nurses who are dealing with more & more patients rather than being seen by the actual GP; They can prescribe meds though, some are way better than others & they do serve a helpful purpose at times.
However, as a retired Paramedic myself, I refuse to liaise with some of them as they are absolutely rubbish! I do sometimes insist on speaking with/seeing a GP, but they are really strict & allow only one problem per visit! Or two if an extra long appointment is booked - if one is ever available….
Online consultations are another option, (which do occasionally result in a phone call but are generally a txt message response…Not always great IMO!)….Furthermore, the Online Consultations are not user friendly, (limited characters, time-limited & every member of staff in the Call-centre&/or GP surgery have access to it which means I am often ‘guarded’ in how I word them - No confidentiality, privacy or regard for personal details.
Plus the notes following any means of ‘consultation’ are very often inaccurate! …. Yes, I have gone through long-winded, stressful trouble of raising many errors with the Practice Manager….who is incredibly elusive.
The main reason I don’t change GP surgery is the convenience of the location which is close to home. Other practices in the area aren’t much better anyway, so it’s a case of, “Better the Devil I know.”
Nice chatting & many thanks for your really useful reply 🦋 💜 🦋
I can see that Naladog has already shared that lupus is on the list of conditions eligible for prescription sunscreens, so your GP or consultant should be able to prescribe it for you.
In terms of brands available, we have some information from last year about SunSense being discontinued but Uvistat being available (lupusuk.org.uk/sunsense-spf.... I've added this to my list to look into in case there have been any changes and I'll write an update soon (including some info people can give to their GP if they're refusing to prescribe!).
Your reply & information is much appreciated, I will endeavour to get some on Prescription even to just make a point! 😂
One GP at the practice I go to, refused to prescribe me a antihistamine last year when I had a severe, adverse reaction to Hydroxychloroquine, she told me to go & buy some from a pharmacy….I despair at times with them.
Hello all,was just wondering on a previous question about any community get togethers in the coventry an nuneaton area as still struggling to find any,any update would be great thank-you all warriors x
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