Hi everyone. I need help. I purchase my 'plaqunil' overseas as UK stopped manufacturing it quite sometime back. I do not respond well the the replacement 'hydrocloroqunin' although I use it if I don't have access to plaqunil. Until recently i used to buy it from Turkiye, Pakistan, sometimes in Dubai as i travelled for work or family visit. Due to covid19, all countries put a restriction to this medication and i can not fly. Both my daughter and myself are in difficulty. I am running out of my supplies. My gp refuses to give me prescription in the meantime until my hospital visit stating that i am not showing on the system as a user for this medication. BUT, my notes and hospital letters state I am on the med (almost 10 years), and SLE sufferer. On top, they refuse to give me a shield letter. I can work from home limited time, but not for long as my work will want me back. I have a daugther who has lupus/Undifferentiated Connective Tissue Disorder. We both use 'plaqunil' but happy to use the alternative in the UK. Even then i can not get my regular prescription or a shield letter for both of us. They can call my hospital, and they said they did, but they gave me a condition to go to the hospital and get a blood test to check my kidneys just as we went on a lock down. Whilst everyone is afraid to go out, they are forcing me to go to the hospital to get an unnecessary blood test as a condition to give me my regular medication. I am a regular patient at Royal Free but my GP is so terrible that we can not even communicate. I would like to take them to court for blackmailing me for a test (just a random request) to give me a prescription for a med that I use regularly. They confirm I am an SLE patient. They confirm my letters state I use 'hydrocloroquinin' but they refuse the letter and the prescription. I am speechless and sad and broken. I asked them to write a letter stating that they refuse to give me both, they said it will cost me £30 pounds. I want to take them to court and get my prescription. Any suggestions? Hope you are all safe and well. Lots of love, L
Our GP is out of their mind!!!!: Hi everyone. I... - LUPUS UK
Our GP is out of their mind!!!!
I’m at Royal Free too and you can contact them directly. I know someone else who couldn’t get meds from GP and spoke to the registrars/ on duty consultant at Royal Free and they post the medication out. The pharmacists at Royal Free are very good.
Who is your consultant there? Some are wholly on covid duties but one of the others should pick up the case if you phone the rheumatology helpline or email your own consultant.
You shouldn’t be left without this medication, I’m sure there’s some way around it. And the Royal Free drs will be very unlikely to expect you to have a blood test first as they’re trying to avoid all visits x
Hello Melba, Thank you so much for your reply. We wrote to my daughter's consultant (Dr. Schreiber but he did not reply to her yet although he is quite attentive, due to Covid19, he must be very busy). I left three messages for my last consultant Dr. Animesh Singh but did not hear anything back for two months now. Dealing with my GP practice is a nightmare. You can not reason with them. It is madness to send someone out for an unnecessary blood test just to do 'spot check' on kidneys is outrageous. Even though, I reminded them they were building temporary morgues in central London, having a random blood test would risk my life and both my daughter's lives becasue I could bring the virus home (my oldest had two tumor operations and my youngest has what we have, Lupus/UDCTD). We have been working from home about 10 weeks now. But without a letter of support and without our medication, we have no chance of surviving. The last call on Friday, doctor said, if i catch covid19, it was not bad since I was using hydrocxycloroqunine which they dont prescribe in the first place. What happened to the times when you walk in to a doctor's surgery, they would listen to you and offer a remedy to your situation? Listen to you and say, how can i help? I asked them 'do you see in my notes that I am an SLE patient? The answer is 'yes'. I asked 'Do you see my medication is hydrocxycloroqunine, reply is' yes'. My reasoning is that if you can see that, either call my doctor at Royal Free or give me two/three months of supply so I can save mine and my daughter's life without triggering a flare. They gave me one box and said if you want more you have to have a blood test, the exact sentence was 'if you want more of this medication, we will not give it to you unless you get a blood test'. Never seen anything like this. It is random,. They even called my consultant at Royal Free and confirmed I am on this medication.
Thank you for your reply. BE well and be safe. Lx
So hard at the moment and not helpful of your GPs at all. So sorry to hear your daughter have health problems too ☹️
Dr Singh is on full time covid duties and I think Dr Schreiber is too but the other consultants/ registrars are looking after their patients in their absence. The admin is struggling a bit though as so many are shielding.
Email Keith,
Keith.chawgo@nhs.net
He’s in charge of getting the patient messages to the consultants and ask for one of them to call you back because it’s not safe for you to not have your medication. I think one of the registrars could sort that out very quickly. If he doesn’t respond to your email quickly then I have a phone number too.
Xx
Dearest Melba, Thank you very very much for your suggestion. I will write to them in the morning (justin case they may miss the email at the weekends). I wrote to private GP's and wanted their help upon providing hospital letters and diagnosis. I can not forgive my GP practise. To corner patients like this and blackmail them is unacceptable. It is outside of their 'duty of care'. If I did things like that to my clients, I would be taken to court. Complete mystery. I am most grateful for your help and suggestion. With love and best wishes, Lx
Dear Melba, I wonder if I can have the number for the line you suggested at Royal Free. Today is the fourth day since I wrote an email to Keith and no reply yet, I am hopeful. Days seems to jump in fives instead of one by one. I do not want to leave it for bank holiday, as the gap widens and need is near. I was managing it by taking my medication one a day and giving my daughter to opportunity to have her full course. Not sure how long for say another two weeks (if I skip). I have also requested the brand tinkytink suggested. Zenteva and will use that instead of Bristol Laboratories(if only I knew it before). Your suggestion and understanding meant alot. I am not mad, I just want to protect myself and my family. And all is required to someone to consider their 'duty of care'. I have this care for my clients and honour my responsibility. Even if I am in pain, even if I can not walk (this lock down and limited med changed my body to worse). I try to get up and full fill my duty to my job against all odds. Why cant they? Yes it is difficult times. We help each other. If my GP who was at the surgery did what was required , I would not have been here, bothering consultants who are on Covid19 duty in the first place. But when someone is unable to understand a need and assess a medical situation, look how many people are involved and situation is no longer a simple prescription but a matter of life and death.
Hello, sorry you’re having no luck getting through. I know of others who have had the same and my GP has just written to them to complain that they’re not responding quickly enough.
I’d email again too (headed urgent and ask for a response today as to what the plan is and who the message has been passed to!) as phone calls often don’t logged so with email you have proof of when you asked for help and they’ll hopefully action it quicker. Yours is a simple request that they can do quickly so there is no excuse or reason for you to feel guilty for bothering them - the consultants would definitely want you to have the right drugs - they are probably just not getting the messages passed on because the admin is struggling.
You have to go through royal free switchboard 02077940500 then Keith’s extension is 38491
He’s pretty good at answering but if you have your consultants email addresses then I sometimes find that’s much quicker as the new registrars there sometimes lose requests etc 🙄
Good luck xx
Melba, Thank you. I am most grateful. You are lucky, you have a doctor who understand their duty of care and also care about you. Ours is on a different note. As you mentioned whilst Royal free is posting medication trying to keep patients away from the hospital as much as they can, and restrict unnecessary exposure, ours is the opposite. If I put a dangerous dog outside the door and ask people to pass it, they would not leave their home or look at ways to pass it safe. Whilst China, Iran, Italy, France, US and UK are on lock down, limiting the outside involvement, I can never ever forgive a random blackmailing. And I have seen so many times that if a doctor's approach is this, then there are other people's lives at risk too. Not just to ours, to other patients too, because it is the way they think and approach. Once again, thank you for your time, help and replying to my posts. And the saddest part is that as a complete stranger, you understood my point through a short post at a website wherever you are, but as a doctors our ours with their oath, they could not. Lxx
Any luck getting through? Really hope all sorted now for you x
Hello Melba1, how kind of you to ask and check on this matter. Thank you. I am afraid not. It is sad. Very very sad. I sent another email today. I also left a message to Keith last week. Unfortunately, I am tired to continue. Due to sensitivity of our health, it is very easy to fall into depression. People forget how we have to fight everyday to get out of bed. Having this isolation where our medication is in the hands of others and I have no power to change that other than write emails or endless phone trials. It leaves you with a sense of acceptance. I will wait to see my consultant. Whatever will be, will be. However as soon as I get my strength, I will try legal channels to report my GP. Given that I have the mental strength. Thank you so much for your care. Lxx
Here is Keith's reply:
Unfortunately, due to your lack of blood tests from the past year, in order for us to be able to give you access to your medications, we will need an up to date blood tests.
These can be accomplished in one of two ways:
1. You can contact your local GP and they can perform this. You can pass my e-mail to them if need be.
2. Or, alternatively, you can contact me, via e-mail and I will book these onto our hospital database to ensure these are done in a timely manner.
If you have any further questions, please let me know and I would be more than happy to answer these.
Please stay safe and well and let me know how you would like to proceed.
Unfortunately, This is what Keith said. Only because my last test was 1st August 2018. They want the blood test 
and I asked him to book it through Royal Free, What choice do I have? To supply a box of medication is that complicated. How silly and how wrong!!!!!!
Pleased you have a response and a way to get your medication now though.
I was admitted to royal free a couple of weeks ago and it was fine, very empty compared to normal and I didn’t feel at risk from the virus as they keep covid cases very separate.
I expect the blood testing department will be carefully monitored and if you’ve been flaring again, probably a good thing to get bloods if it’s not at high risk although do understand your frustration and concerns.
My royal free consultant rang today and said the department is starting to get back to more normal routines from June so hopefully they’ll catch up with appointments although think a lot of them will still be on partial covid duty for some time xx
Thank you for your assurance Melba1 regarding the hospital visit. They are not going to rest until we get covid19, its perfectly clear to me. This reminded me the time I used to fight to explain to doctors at UCL, London Lupus Clinic (privately paid, Dr Givanni, waste of my time and money, sadly) and eventually at Royal Free ''I think I have lupus but you are missing it and I am very sick' argument until they changed my consultant to Dr. Pamela Mangat who put me on a trial medication' Plaqunil', when it was available in the UK (I had no idea what this medication meant at the time)and Vitamin D combination. I thought she was trying to get rid of me like the other doctors and long be hold my eventual diagnosis with SLE. Plaqunil gave me 9 good years and my daughter about 6 years up until now. I am no longer well (Physically and mentally, partly because lupus is not our only problem).
Now I have to take my daughter with me to hospital, dragging her to the potential risk because the system says so. Being in a sensible profession, and my survival instinct, I can not reason the whole situation one bit. When the hospital went through cancellation of all appointments about three years back and did not offer any appointments for two whole years(they kept cancelling it), I again went to Turkey to get my tests and check up done. I assure you no one was ever worried about our blood tests at the time. Enough said. I think I have been keeping this platform busy with my story, far too much. Lets see what happens. Thank you for your support. It is nice to know that among many, my lines are interpreted in the way I intended to without going in to different areas with good solution. With love and affection, xL
I understand the desire to get plaquenil as the research suggests there are far less side effects than most generic brands.. So I did a lot of research and found helpful articles on lupus UK. ,
It turns out that Zenteva which is a generic, use same formulation. So I have 'zenteva only' on my scripts.
Tinkythink, thank you very very much. After travelling abroad in search of plaqunil, i have recently come across this information on youtube last week. I was not sure if that was the case but now that you tell me the same information and use it, I have no doubt. If our consultants told me the same, it would have prevented alot of cost and fear of being trapped, save my health a bit more. In fact before this lock down, I was supposed to fly to buy my supplies (3rd of May) but was not permitted to do (covid19 restriction), hence the chase for prescription at my GP started (which I am in the system of Royal Free as a regular user). In fact if my doctors told me this information, I would not be feeling like this writing here, because I would have known there is a proper substitute without going through the hastle and arguments and be on the ystem of my GP or at least would have tried without the pressure of covid19 outside my door, with proper access to medical care incase I did not react to it well etc. I ALWAYS told my doctors, I travel abroad to buy medication because I dont respond well to hydrocxycloroqunine. NOONE told me this. It is even part of Lupus UK's website. If we know this information to be the case and Lupus UK knows this, and you know it and your doctor knows it, why mine constantly told me 'plaqunil is no longer available, but there are two options?' . A lady at Boots recently said, plaqunil is private prescription. Could you believe it? Anyway, thank you for your help and it will save our lives. I will think how we can pass this information so that people wont feel trapped in the way I did for so many years. Even if it means one patient. And lack of use may force Bristol Laboratories to change the prescription to use similar medication to plaqunil. Covid19 showed what I have been arguing for so many years to be the case. Plaqunil is better and most effective and it does not make many of us more sick. It makes us better.
Thank you for your help. With love, Lx
Worth noting that even the plaquenil ( which is no longer available here) and the same formulation by Zenteva...and incidentally Blackrock, can still cause side effects to start with but these are usually offset with metoclopramide to help with sickness until you get accustomed to the meds. Try to establish a better relationship with your GP, tell them you have researched and found a uk solution you would be happy to try and see if you can get them back on board. Stress is a known contributor to flare ups and you need to get settled quickly into a routine. Hope you get sorted soon...let us know?
It is standard for your kidneys to be tested before starting to prescribe this medication. Although you have been on it previously, it sounds like this wasn't monitored so they should do the test to make sure your kidneys are okay before restarting. Please know that the hospitals and clinics are putting all precautions in place, and the nurses in most hospitals are not being mixed between covid / non-covid areas. I would get your blood test done and then you can start back on your medication.
If you have any further issues then I would ask your consultant or specialist nurse to prescribe, but this would normally mean another hospital attendance.
In terms of shielding, it is unclear from your post what medication you take (or history you have) that would mean you meet the shielding list. You have to be on high dose immunosuppression (prednisolone 20mg+ or prednisolone 5mg+ WITH another immunosuppressant), or have another listed condition. If you meet this criteria then you can contact the council to add your details to their lists for food deliveries etc.
Lupus sufferers on only hydroxychloroquine have been deemed low risk by the Rheumatology Society and so fortunately do not need to shield. The government has issued guidance saying that you need to stringently social distance but can shop and exercise. I do not know your medical situation but from your post, this may not apply to you. If so, you need to be careful but fortunately can exercise and spend time with your household.
Hope you get back on your medication soon, and feel better. It is a really tough time for everyone x
Hi,
I understand you have a few problems here, obtaining the hydroxychloroquine as well as the brand you prefer. I was on Plaquenil for years and when it became unavailable in the UK was given brands that did not agree with me and had very nasty side effects. Hydroxychloroquine from Zentiva is a good substitute. Please have a look at Paul Howard's advice re what to try if Plaquenil is not available to us. Also I found the Hydroxychloroquine from Black Rock pharmaceuticals gave me no side effects.
I do hope you get your prescription verified asap & wish you well.
Hello, did just leave a note but forgot to mention the blood tests. DMARD tests are done every three months for me as I take Hydroxychloroquine & Methotrexate. Don't be too worried re the test it's standard. They're only checking to make sure you have no damage from the drugs. I really hope you get this problem sorted especially as you say you have a daughter who also needs Hydroxychloroquine. I'm horrified to know your GP is being so unhelpful.
Thank you Catno1. Very useful information. I am not worried about the test at all. As a lupus patient for over 10 years, I get tests done every year and regularly. It is part of our routine.
I was worried and still worried about going to hospital for an unnecessary, random blood test given Covid19 is a concern. UK states to stay away from hospitals unless absolutely necessary to protect yourself, and I was/am forced to visit. Now I have to, because I am in pain and can barely walk some days due to inflammation in my knees and spine for a simple prescription. To make the matters worse, I had a virus in February and my immune system is overworking and I need this medication to settle my immune system. If they check my records, I am sure they will find a test on my kidneys not long ago, but instead of checking my records, they did not give my medication because there is a note saying 'unless she gets the blood work done, dont give her medication!'. When I called to ask a letter, they questioned me and asked for clarification. My reply was 'If I go to the hospital, there is strong chance that we might die, but if I dont get medication through you, there is a strong chance that we will survive'. Thank you for your help and kind note. I noted your suggestion on alternative brand and i did ask as part of my letter. With love, Lx
Hi,
I understand your concern not wanting to attend a hospital. I've had SLE for fourteen years. It is your choice either way but if your ANAs are still high then you do need that Hydroxycloroquine to suppress your immune system and help with the current problems you have. Although my tests show very low ANAs I have APS (Hughes syndrome) which makes it unlikely my SLE will ever go into full remission. 6 months ago I suffered multiple vertebral fractures as I also live with osteoporosis and osteoarthritis in legs, ankles, spine so NOT happy to hear you have troubles. I'm 52 so it's been a bad time & I hate knowing others have problems. But, forget my moans, please do consider what I said re the Hydroxychloroquine brands. I was given Quinoric a name given to another Hydroxychloroquine brand. Avoid that if you can. Side effects were not good. Search on Lupus UK for 'Problems obtaining Plaquenil' as I have said it solved my problems after Plaquenil disappeared.
The trouble with doctors is they could look in your history and check your latest blood test results but yours sound like they are making problems and not helping.
I hope you get this sorted as it is a ridiculous situation to have put you in.
Take care,x
Confused 😖
Still totally confused
This is a call out for. Do you feel down after your 3 month rheumatology review for Lupus?
What is happening to our appointments???
I have no words !!!!
