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Lately, I have been writing a lot about the Sjogren’s Foundation and programs that are being created for patients. As Board Chair, I love to share my experiences and knowledge with you, and the pandemic has heightened my need to communicate. Today, I am asking you to complete the Sjogren’s Foundation Survey on Sjogren’s and Hudroxychloriquine use (and use of other anti-malarial drugs to treat Sjogren’s). Whether you currently take anti-malarial drugs or not, and if you reside in the US, please do take the survey! It will help patients enormously!
In this article, I talk more about the need for information on Sjogren’s and Hydroxychloroquine, and I offer a few other thoughts on why I write. Soon, I will be writing more about some of the challenges we face as patients, and some ideas to help us live a productive and meaningful life. But lately, and until the National Patient Conference is completed, the Sjogren’s Foundation is top of mind!
Why I Write About the Sjogren’s Foundation
When I write my articles, I try to bring a balance of my official voice as Chair, with my voice as a patient and advocate. You may have asked yourself, “Why is Janet writing so much about the Foundation when I can get that information from the sjogrens.org site”? There are a few reasons that you might find interesting:
- I am profoundly proud of the work the Foundation does for patients. And I don’t think they toot their own horn enough. So I want you to know the GREAT lengths they go to so we can live a better life.
- Some of my readers are not members of the Foundation, and I want you to be informed of all that is happening in the US. The Sjogren’s Foundation is recognized as a world leader in the Sjogren’s field and I want my international readers to know what is happening here. Because where the Foundation leads, the world does follow.
- Finally, as an independent writer and patient, I have a particular perspective when I write to you. This often includes things that the Foundation doesn’t state because it is their job to be an advocate and educator for all (e.g. people, companies, organizations, and medical professionals). They exhibit great diplomacy. As Chair, when speaking on behalf of the Foundation, I also try to practice diplomacy. HOWEVER, as a patient, I’m quite comfortable calling bullshit on organizations that aren’t making the grade for us. An example is my post on The 2018 Rheumatic Disease Report Card. I also speak out strongly, to you, when it is truly important to take action. So when I write to you, it is with my own voice and stating my own opinions.
Today, I am motivated by all three reasons above, but I am deeply rooted in #3. There is a true need for Sjogren’s patients to be heard about one of our most common treatments — hydroxychloroquine.
Why Don’t We Have Clinical Trial Data for Sjogren’s Hydroxychloroquine?
When the Covid-19 pandemic hit, and the word “hydroxychloroquine” was used as a treatment option, Sjogren’s patients were at great risk of losing access to the medication. The people who held priority for the drug were those who were “recognized” as having clinical trials or data backing their need for the drug. Rheumatoid Arthritis and Lupus have that data, and Sjogren’s does not. It is only because the Sjogren’s Foundation and Steve Taylor (the CEO) are held in such high regard that our voice was heard by the FDA and drug manufacturers of hydroxychloroquine. In fact, the US President of Novartis, a maker of hydroxychloroquine, called Steve directly to discuss our needs and that they were ramping up production.
Why doesn’t Sjogren’s have a clinical trial in its history? Well, as you know, Sjogren’s has been the “missed” or “unrecognized” autoimmune disease for a long time. Historically, there just weren’t enough recognized patients to warrant a clinical trial. Clinical trials also became much more rigorous after other hydroxychloroquine trials were completed. So the bar is set even higher now, by the FDA.
Additionally, clinical trials are usually conducted by the pharmaceutical company that has created the drug. Hydroxychloroquine is a fairly old drug that has been in the marketplace for a long time. At this point, there is no real financial benefit for a drug manufacturer to conduct a clinical trial.
So why doesn’t the foundation conduct a clinical trial on the patient’s behalf now? Clinical trials are expensive and have rigorous requirements in order to be accepted by the FDA and the medical community. To date, it has worked for physicians to prescribe the drug to Sjogren’s patients based on their knowledge about RA and Lupus and the anecdotal evidence that it helps some Sjogren’s patients. Having a clinical trial would certainly help, but as I stated, it is very expensive, time-consuming and rigorous work. The Foundation IS working with and supports a number of pharmaceutical companies that are developing specific Sjogren’s therapeutics. These drugs that are in production are, hopefully, a therapeutic that will address more of our symptoms head-on, and we hope they will address more Sjogren’s patients. But hydroxychloroquine is a drug that has fairly low risk and minimal side effects for most patients and we will have to wait to learn more about efficacy and safety of therapeutics currently in clinical trials.
Sjogren’s and Hydroxychloroquine Survey – Deadline June 24, 2020
So… the best solution now is to collect data about Sjogren’s patients and their use of antimalarial drugs (e.g. hydroxychloroquine and chloroquine). The Sjogren’s Foundation has created a SPECIAL SURVEY just for this purpose. They are looking for US residents’ input since the Foundation is US-Based. But do know, international readers, that this data can prove helpful to you once the Foundation publishes the data.
This will help the Foundation place the Sjogren’s patient in the minds of the FDA, pharma companies, and the American College of Rheumatology with real DATA. During the hydroxychloroquine shortage from the pandemic, the ACR was delivering guidance to their rheumatologist membership that hydroxychloroquine was not urgent for Sjogren’s patients. Au contraire mon Amie! Personally, I require hydroxychloroquine to manage my disease. Without this drug, I am not functional; so it’s pretty urgent to me! The Foundation and rheumatologists associated with the Foundation wrote to and met with ACR leadership to change this position. They did change it, but it was a great deal of work. Data from this survey can aid the Foundation to show the numbers of Sjogren’s patients that need these drugs! And scientists are trained to look at data as proof. So let’s get them the data!
Hi Janet,
I’m in Canada, so obviously I will not be taking your survey, but we had the same dilemma here as you had in the US during the pandemic. I was told there was a shortage of hydroxychloroquine and my prescription could not be renewed because of the shortage. The priority was given to RA and lupus patients who needed it! They would try to contact my rheumy, but meanwhile I did it myself. I understood that they needed their meds, but they were also on other meds for their illness, while I, and probably others with sjogren’s were only taking the one medication for our illness. I was able to get a half dose of my usual meds. Apparently, we are no longer in shortage, so we’ll see if things get back to normal. I can’t understand how people who have been on meds for years can suddenly be cut off. The pharmacist was explaining to me that the meds stay in our bodies for 30 days even after we do longer take them, but if the shortage had gone on for longer, what happens then? You are doing good work, keep on fighting. Thank you.
Thank you for your comments!Janet
Thanks Janet. I completed the survey. I want to mention my experience last year with plaquenil. I have been on it for 9 years. In November I had a scare that the plaquenil was impacting my retina. Because of this I went cold turkey off of it. I had been on 400mg a day. Within a month of being off of it, I had a horrific flare with extreme fatigue and debilitating nausea. It lasted from mid November to the end of January. Turns out the retina ended up being ok for now so I went back on the drug at a slightly reduced dosage and have been much better. So this post is just a long way of saying that this drug is critically important for Sjögren’s patients!!! There is also evidence that the drug helps prevent neonatal lupus in babies. My son had a severe case of that before I was taking plaquenil. I wish I had been on it when pregnant.
Allison, thank you for your account of going off HCQ! I must admit, I occasionally consider going off since I’ve been on it for 10 years, but think I think about the possibility of having an experience like yours. So I continue taking it and hope I don’t ever have eye issues! Thank you for taking the survey!
Hi Janet,
I also completed the survey. Last year I wanted to try going off Plaquenil. After tapering off, I immediately broke out w the severe rash, nausea and extreme fatigue.
Within two weeks of starting back up, my symptoms subsided. I haven’t had any problems since. I am examined by my Optometrist 3 times a year, taking the Plaquenil field test each time. So far, thankfully no problems with my eyes.
Thank you!
Nancy Hohla
Thanks for your comment Nancy! The more we hear about stories like yours, the more other patients can understand the risk potential of going off HCQ and whether the risks outweigh the benefits.