LUPUS UK

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Daily Mail publish article highlighting UK hydroxychloroquine shortage

Hi everyone,

Earlier today the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) distributed a press release drawing attention to the UK hydroxychloroquine shortage and the impact it could have for people with lupus and associated conditions.

The Daily Mail has featured excerpts from the press release in this new article - dailymail.co.uk/news/articl...

We are applying pressure to the government and NHS to respond to our questions and provide reassurance that a stable supply of this essential medication is available for those with pre-existing conditions who need it.

We'll keep you updated as this campaign progresses.

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Paul_Howard

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Hydroxychloroquine

41 Replies

•

Teanna3 years ago

Hi Paul, I have the hydro in my blister pack every month and it’s due next week. Am I best to call the pharmacy (just to remind him)? I also have paracetamol 2 , 4 times a day. But I do have other health issues as you know.

Thank you, be safe

Teanna

Paul_HowardPartner in reply to Teanna3 years ago

Hi Teanna . It couldn't hurt to check whether they have it for you.

Milliecox3 years ago

Very important work Paul great too see this being done by RAIRDA

Jmiller6233 years ago

In the US, they started denying lupus patients requests for HCQ even with prescription stating it needs to be conserved for Coronavirus. This is nuts. How can you refuse to give a drug to someone who actually needs it? Data for treating COVID with HCQ is weak and flawed. No official studies are even close to showing a statistically significant effect of the drug in treating the virus. It’s all anecdotal.

I don’t think it’s humane/legal anywhere to deny someone of a medication they are entitled to let alone make it an involuntary sacrifice. Lupus Foundation of America sent a letter to congress saying it violates civil rights. I 100% agree. Never seen anything like it.

Best soln. Why don’t HCW who prescribed liberally to people without exposure make HCQ donations back to hospitals? The only reason we are in this situation is due to abuse of power by prescribing docs. It saddens me. Like a lupus life is worth less than COVID life. Just isn’t right.

buzzfeednews.com/article/ta...

npr.org/2020/03/23/82039853...

thestorm in reply to Jmiller6233 years ago

Jmiller, Hi I live in the states here to. I am guessing you do to. First may I wish you blessings. Now, if you are here in the USA, there is a drug finder and price list for people to use, and try. I will post it in this reply. Just go on the site, follow the directions, take your time, and put in Hydroxychloroquine 200 mg, 30 day supply, as an example. It will show you where near you it is, at what pharmacys, the cost, there name, phone number etc. You can do it with any medication. The site has good resources, and help. I have been using it for a year now, and what a blessing it is. needymeds.org/drug-pricing I am also guessing you are on this medication? I am, and many more. As for the Cloriquin, it is being used by hospitals along with the Z pak, in extreme circumstances, experimental on patients. At the discretion of the health facilities, and providers. My friends are Nurses, and so was I sooo many years ago. Now I am dumbed down from my conditions. But in light of this, I know of one person who received this therapy, NOT a cure, and recovered off the ventilator. I am sharing this with you, and all here for the first time, as I hope in some way my story will help people understand, We all matter, We all are important, and We all care. What the governments say, as with anything should go with a grain of salt. Our conditions, medications, are unique to each of us here, so keep trying to find what you need, and if I can help in any way, I will try my best for you, and anyone here. Try it, and let me know how it goes. You take care Jmiller, be well, be blessed, and all my prayers to you and your loved ones, thestormy sunshine

Jmiller623 in reply to thestorm3 years ago

scienceintegritydigest.com/...

forbetterscience.com/2020/0...

Hi Stormy. Well wishes to you too. I’m glad there has been a case where HCQ might have worked. The study we are basing treatment off of was a complete hoax. See articles attached. If you look at the numbers, HCQ actually seems to do more harm than good. There is literally no solid data to support its use at all at this time. That person may have recovered without it. We’ll never know. A doctors mantra is first do no harm. I am an internal medicine physician.

In regards to rx. I checked good-rx and similar sites but there are no discounts for brand name Plaquenil. Only generic. There is absolutely no generic or even Plaquenil left in my area. The price is so ridiculous because the drug isn’t on the insurance formulary. Doesn’t matter what discounts I’d get, I’d still have to pay market price for the brand name. If other insurances have brand name on their formulary (which is basically approved drugs for coverage) then I’d pay usual deductible. I want to appeal that I was forced to pay this because the generic was out of stock everywhere. I called 7 pharmacies. Appreciate the new resource. Will look into it.

Be well and stay safe! ❤️

thestorm in reply to Jmiller6233 years ago

I hear you Jmiller, Thank you for clarifying that for us, I did read the articles, far reaching numbers. Hard to do a case by case study during apocalyptic times, maybe my friend was just blessed.... you know well what is up. Mantra, and the people to do no harm. That policy is flying a braud flag at half staff right now. My friends in the front line are forced to make the choices with remote access to the Mantras in charge. I wish I could help them.... As for what you said, I am on Plaquenil 200 mg's and my insurance does not have the brand in its formulary either. Most insurances go for the generics first. But on my needymeds site, I get plaquenil for about 300.$ for thirty day supply. Did you ever try calling your insurance company, most have patient care managers, let them know what you are experiencing. It is worth a shot, you have nothing to lose. I wish I could help you with that. I am searching for that Med within a 30 mile radius, and still get hits on it. Do you find difference between Hydroxychloroquine and Plaquenil, if I may ask... I am with you on those appeals, drug companies, and other markets rule the roost, until people like you make them eat crow... You stay you, stay strong, keep posting, And I will keep praying for us all. peace to you and yours, thestormy sunshine

Jmiller623 in reply to thestorm3 years ago

Yes! I miss taking care of patients so much. I completely understand. It’s hard to make these decisions when you see someone circling the drain. You just want to throw everything at them, especially the young ones.

I did call my insurance company. They were the ones who had to explain it isn’t on the formulary which floors me. It’s still a cheap drug even if brand name. They gave me the address for appeals, an incident number and I have to write and mail a physical letter. Hoops...so many hoops! Oddly, the CVS I use has been filling my rx with brand name for the past 9 months even though it’s written as generic. I think that’s their mistake and I’m not rocking the boat on that since they could retroactively charge me for brand name. I also get 90 day fills. I take 300 daily. A 90 day fill of brand name on NeedyMeds ranges $700-900 which is much cheaper. I paid $1034 for 66 days worth. I will be sharing this website with others. It is awesome.

I do much better with brand name. I had a lot of side effects with generic. GI upset and palpitations. But if I can’t get brand name covered, I’ll switch back to generic and just have to deal. Maybe side effects won’t be as bad since I’m acclimated to it.

May I ask where you located? I’m in PA.

thestorm in reply to Jmiller6233 years ago

Ok, so the pharmacy may have done the deed, LOL... Ya, keep shhhh on that one... I so miss working. It was my calling.. But, you know, life throws curve balls. I worked nights. So sleep rhythm is still on the clock... I am in western N.Y. southern end, near PA border. We used to live in PA, as hubby worked for utilities industry. Was at Indian point power plant till 911.. Then my whole family became sick, and I moved back to buffalo to care for them until they passed away.. So we then moved here. Love the country, dislike the city. So glad the site may help you. Those prices for drugs are ridiculous, and fat in the industries pockets.. Maybe someday it will stop.. Take care of you and yours, post anytime. my prayers and blessings to you. thestormy sunshine

Jmiller623 in reply to thestorm3 years ago

Actually NeedyMeds is $300 cheaper without insurance. Definitely will use this if I ever get in a bind again. Many many thanks!!!

thestorm in reply to Jmiller6233 years ago

Good to hear! Yes, I forgot to say I pay out cash for it. I don't use my insurance. Hope it helps, and pass it on for others too!!! Blessings to you.

in reply to thestorm3 years ago

I do wish you all the best🙏. This is useful info for everyone, I hope. I went off it in Nov after only 6 weeks. Using an alternative path that is working very well for me. But for you who use it, I hope it stays in your system well enough (does it do that?) until this situation gets resolved. I’m praying for enough for all of you and to help in this nasty pandemic.

Hoofprints in reply to 3 years ago

When you say you are using an alternative path that works well for you, what do you mean? I am curious, but only share if you are comfortable doing so 💐

in reply to Hoofprints3 years ago

I went to an alternative therapist end of last October. She did something called ‘Foot Zoning’ and read my body. She, without me telling her anything ahead of time, pinpointed all the same things the blood work and other labs did, but she was more detailed about things. It was pretty amazing. Then she gave me a list of supplements that change every two to 4 weeks, plus cold pressed celery juice, a shot of kombucha, and unsweetened grape juice with cream of tartar, and powdered collagen. Also a soil based probiotic.

She gave me a long list of foods to stay away from, to add to the long list I was already staying away from. I was already following a strict AI diet, and the allergist found 19 foods I’m allergic too. The Zoners list was of all these same things, but she added to the list. She also told me to eat sourdough bread because of the fermentation. I had been staying away from bread because of the gluten. She also added percorino cheese and goat cheese into my diet. I love cheeses but stopped because of dairy allergies. But I guess goat and sheep cheeses are ok?

Anyway, I check in with her every few months when I’m to the end of things and she tweeks them and I continue on. I have felt a ton better. Still run out of energy quickly so hopefully I will get over that too, but the energy is better than it was. Pain and other ailments are gone. Brain fog gone. Rashes are so much less and getting better. Overall I’d say it’s working but, I’m not sure if I’m not coming down with something. Today is my 14th day of self isolation but I had a rough time last night. Hopefully it passes quickly.

I had told the rheumatologist over and over that I wanted to go holistic and she had an nurse practitioner in her office that aids in that. But the NP, who was great, just gave me general supplements, most of which I was already taking myself. They kept pushing Hydroxychloroquine and I kept refusing. I was fearful of side effects. I finally gave in and was on them 6 weeks before going to the Zoner. Without knowing I was taking them, she said she saw metal on my brain and asked if I was taking anything. When I told her, she advised me to stop immediately.

I could tell you stories about the friend who referred me to her (the Foot Zoner lives about 12-13 hours away from me, but I have family about 2-3 hours from her so I made my appointment for when I was up there visiting some of my kids). I could tell you about the young farmer that we met that she was finishing up with before I got there.

Oh, and this woman ‘had’ Lupus. She said she was cured several decades ago. I’ve had two other people who told me they also ‘had’ lupus but worked with alternative therapy and no longer do. Two that worked alternatively with their rheumatologist. I did my think you could cure🤷🏻‍♀️But I am feeling better. I started her plan for me end of last November (it took awhile before we got back to our house, then for me to organize what she wanted me to purchase, and the order from Amazon, etc.) so it’s been 4 months?

My husband taped my two hour session with her. He’s a cop, so he doesn’t ’buy into things’ but, he was so amazed that when he got back to work after our trip, he was telling everyone about her.

Best of luck to you🙏

Hoofprints in reply to 3 years ago

She sounds amazing. Thank you for sharing. I'm really glad that you have found someone who is helping you, and an approach that is suiting your individual body. Keep us updated and I hope you go from strength to strength 💐

in reply to Hoofprints3 years ago

Awe, thank you Hoofprints. That’s very kind. I hope you find health and peace as well. All my best🙏

suzannah163 years ago

thanks Paul, you are much appreciated

Joni20113 years ago

I replied to a post earlier about the letter to an MP about this. My GP requested a repeat prescription of hydroxychloroquine on Monday and it still hasn't arrived at the pharmacy...

Melaxx3 years ago

Hi Paul , thank you for keeping us always up to date , I order my repeat prescription today they told me it will take 5 days . I still have some until the end of the month , first week April ( maybe)

Just a question , can you still take out of date meds ? I found a full box in my suitcase but is out of date .

Thank you 🙏

Paul_HowardPartner in reply to Melaxx3 years ago

Hi Melaxx ,

I'm afraid I couldn't answer that question - you'd need to check with your pharmacist. I imagine there would be concern about the safety and/or efficacy with out of date tablets though.

Jmiller623 in reply to Melaxx3 years ago

This is a personal opinion and not a professional one. If I could not find HCQ anywhere and had no hope of it being filled in the near future aka your access is completely shut off, I’d probably take them if a year over exp date.

It’s strongly advised to not take any drugs that expire because they have harmful effects outside of intended use since the composition changes with time and moisture. But if I had a choice to use the expired ones or go without, I’d take the chance. I’d even do this before going back on steroids. Again this is my opinion. It’s probably not safe but I’d do anything to prevent a lupus flare.

Kevin53 in reply to Jmiller6233 years ago

There isn’t a switch inside the drug, potency may decline certainly not for two years and probably ten if they are stored correctly.

Jmiller623 in reply to Kevin533 years ago

I’m thinking of examples when drugs become toxic after sitting for too long - first thing that comes to mind is tetracycline. It’s poison after it sits for too long. It’s chemical composition changes. I doubt that’s the case for HCQ but just want ppl to be mindful that it does happen with some drugs.

Kevin53 in reply to Jmiller6233 years ago

Yes tetracycline is one of the few. Best wishes Kevin

eekt in reply to Melaxx3 years ago

My pharmacist said HCQ is good for years...but I'm not a pharmacist! xxx

overnighthearingloss in reply to eekt3 years ago

it probably depends how it has been stored. I don't think a pack of pills understands use by dates.

I am not on it myself. But I have read that it helps the body to take up zinc, but heard today that quercertin found in onion skin does that as well to a lesser degree.

Kevin53 in reply to Melaxx3 years ago

It turns out that the expiration date on a drug does stand for something, but probably not what you think it does. Since a law was passed in 1979, drug manufacturers are required to stamp an expiration date on their products. This is the date at which the manufacturer can still guarantee the full potency and safety of the drug.

Most of what is known about drug expiration dates comes from a study conducted by the Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date.

happytulip in reply to Kevin533 years ago

In the NHS there was often a national shortage of a drug. IV Lorazepam comes to mind in 2009-2010. It was like gold dust. The pharmacy dept of the hospital would extend the expiration date by about 6 months in most cases but it depends on what drug it is.

I would seek advice from your pharmacist as they are the best people to help you.

Personally, if it was me then I would take a drug that had past its expiration date by about 3 months, depending on what it was. If I suddenly couldn't get hold of HCQ I would be completely screwed because I've tried to reduce my dose and both times was a disaster.

BUT, I'm not going to panic about it. We've been told not to stockpile and I have faith in the system. I have to.

To Paul_Howard , I can't thank you and the LUK team enough for everything that you are doing! I feel so much better and reassured that you are advocating for all of us and helping us navigate through each potential and real challenge as they arise.

Thanks too to Kevin and Chanpreet and all the other LUK team members.

eunidarling3 years ago

Thanks Paul for your update.

I am hoping that RAIRDA is successful in the campaign to ensure ongoing provision of Hydroxychloroquine for existing users.

We all recognise that COVID-19 is a worldwide pandemic and accept that there is a need for new treatments to be identified. However, this should certainly not be to our disadvantage especially as people with lupus are at at high risk of severe illness should they catch Coronavirus.

To prevent access to hydroxychloroquine is setting up a lupus patient to have a flare up and become even more vulnerable.

Lupiknits3 years ago

Thanks Paul. I wrote to my MP about this yesterday

happytulip in reply to Lupiknits3 years ago

Can you please keep us updated bon any reply?

Lupiknits in reply to happytulip3 years ago

Will do

eunidarling in reply to Lupiknits3 years ago

Thanks for chasing this up with your MP.

Ironmytherapy3 years ago

Thank you Paul_Howard for this information. I hope I will not have problems when I get my repeat prescription?!

Paul_HowardPartner in reply to Ironmytherapy3 years ago

I hope so too! We're working hard to get this addressed as quickly as possible.

Ironmytherapy in reply to Paul_Howard3 years ago

I sent an email to my local MP this morning, not just for myself but speaking for the whole of the Lupus, RA & Autoimmune Community. I do hope it will be addressed and I have ensured that I mentioned Matt Hancock and the wider Dept Health. 🙏🏼

Paul_HowardPartner in reply to Ironmytherapy3 years ago

Thank you so much Ironmytherapy . RAIRDA are currently working on tools that we can share to help other people do this too.

lupime3 years ago

Thank you Paul. Much appreciated. Trying not to stress about it.

Redfox253 years ago

Sorry if this has been mentioned before but I spoke to a medical professional about this today, in the UK. She looked up HCQ on a database and said there is not a shortage currently and that they were only allowed to issue prescriptions for 1 month at the moment to prevent stockpiling by patients.

Jmiller623 in reply to Redfox253 years ago

Same here is the US. FDA still hasn’t listed HCQ as a medication in shortage. I think it has to do with when they update their systems. We all know there is a shortage. It also prevents leaders from having to put govt wide regulations on the drug. Basically gives PharmD the power to dispense at their disposal.

Paul_HowardPartner in reply to Redfox253 years ago

Hi Redfox25 ,

I think that database has probably been updated now. We tend to be the first to know about any widespread shortages and I've spoken with the manufacturers (Zentiva and Blackrock). I've seen emails today between members of BILAG which is also discussing the matter.

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