Time for another Lupus Q&A Friday! We have gotten such great questions and I hope these answers are helpful to you all! You can read the questions and answers below or click the video above. If you have a question you would like to have featured on our next Q&A video, please comment below!
Kelly Evans: Hi this is my questions I was diagnosed with lupus five years ago I have a positive ANA test and constantly in pain and then there is times of the pain is so extreme that it literally causes me to break down and cry I’m off and on prednisone consistently been on plaquenil and now starting Benlysta infusions. My questions are do you think that these infusions are helpful for me has a lupus patients and when I have my blood drawn every six weeks there is some inflammation but generally comes back normal for me which makes me wonder if normal why am I diagnosed with lupus and taking medication I hope that these questions makes sense and if you can give me any advice that will be great thank you so much.
Benlysta infusions are targeted specifically for Lupus targeting B cells specifically. I won’t go into details of the biochemistry but basically allow to control the auto reactive immune cells and clear the debris or fragmented DNA which “pools” in our serum which further fuels our immune system to go on overdrive to produce antibodies which creates this destructive mode in our body this is basically to “clear” the waste. This hyper state of autoimmune activity is usually measured using the various antibody levels to predict disease activity. Remember, that our disease is managed by very toxic meds that have unintended side effects. Therefore, I’ve managed to stay healthy by using such interventions but working hard on the side lines to ensure that I am supporting my body to strengthen and toughen to withstand such a toxic load. I can’t tell you if Benlysta is helpful for you as it’s still a new drug and its in clinical trials as we speak which means that there’s not enough long term data to substantiate its safety and efficacy. Having said that, I’ve been on it after my third relapse, and I felt the difference the first month and it helped to place me on remission as I was hoping to NEVER have another flare. Will I stay on it forever? NO, currently, my doctor and I are in conversations about possible alterations of the infusions to extend out from 4 to 6 weeks and ultimately stop. Kelly, when you say you have inflammatory markers but generally normal labs, I am assuming that you have high range of ANA, CRP and sed rate with all other Lupus markers in normal range? If that’s the case, and if it were me, I’d have a conversation with my doctor about it and NOT get on the infusion. That choice is up to you as the Benlysta infusion is supposed to keep you in remission but I question the need to help my body with toxic infusions to help it heal long term doesn’t make logical sense to me. With no apparent organ involvement, I see no reason why you should go on infusion, but again, this conversation should take place between you and your Rheumy. I hope this makes sense. Great question.
Cynthia Hildreth: Is their a sure thing as remission when it comes to lupus?
Absolutely a remission forever is possible.
Veronica Thurston: Why are there so many different types of names for Lupus?
In medicine, we have a diagnosis for every type of disease or dysfunction to name and organize. We have a coding system called the ICD (International Classification of Disease) which recently went from ICD 9 to ICD 10. We went from 120,000 to 155,000 diseases and it was a nightmare for us practitioners to code and diagnose patients appropriately. Every disease is named by its various symptoms. And Lupus has various names: Systemic Lupus Erythromatosis (SLE), Cutaneous Lupus which affects only the skin, Drug induced Lupus, Neonatal Lupus, Childhood Lupus, Discoid Lupus.. Lupus is a lupus and it can morph into another autoimmune, mixed connective tissue disease, RA, fibromyalgia, Sjogrens, Hashimotos as the “system” is broken. Seek to fix the root cause.
Carla Teresa: How much does stress affective Lupus and having a flare? What are your recommendations for this? As most people have stress in their lives, what can we do?
Great Question! Stress is often not tangible and its also a normal part of our life. It’s also important to understand that our lives are not getting any easier. We are working more and more and are have overwhelming amount of information to filter. Expectations are higher in the workplace and the distractions are everywhere. We are hyper connected which leads me to talk about our Brain as the computer system. Our autonomic nervous system (ANS) has a direct role in our physical response to stress and is divided into the sympathetic nervous system (SNS), and theparasympathetic nervous system (PNS). When the body is stressed, the SNS generates what is known as the “fight or flight” response which places us in the fear mode. It is a healthy and protective response but most of us are in this state of stress chronically. When in this state for prolonged periods of time, our bodies adapt to this highly stressful state and creates the neurotransmitter cascade which can lead to gut dysfunction, poor choices, lack of focus, difficulty sleeping, which collectively leads to fatigue and pain. What can you do? Breath and meditation, gratitude journal, create habits to shut off your electronic stimulation, cultivate presence in your life, slow down. I use an app called calm which is a guided meditation and also have Heartmath device to retrain the ANS to have more balance and build coherence. This is where you begin to understand your root causes and change what you can to live a healthier life so that your body can recalibrate and heal.
Anna Henderson: What is the connection between lupus and chronically inflamed tendons? What is the best way to deal with it?
Great question Anna, thank you. Many of us who have Lupus have fibromyalgia or undiagnosed fibromyalgia. Fibromyalgia is basically an inflammation of your muscles and joints and like Lupus, it’s due to the underlying “systemic” inflammation that is on overdrive. I like to explain inflammation as our innate response to keep us safe. Our healthy immune system is vigilant at differentiating friend from foe. When enemy enters, our immune system attacks, and we’ve all felt the physiological effects of this, fever, pain, swelling, redness, and loss of function. You know, the way we all feel when we have a flu for example. But imaging having a low grade inflammation over time in response to a stimulus that never shut off. That’s essentially what’s happening in our bodies. We have an adaptive immune response to something and that something is our own cells. When inflamed, our bodies have inflammatory cytokines that are released which can cause various aches and pains. Best way to deal with it for me is to drink water, practice yoga, meditate, and eat a healthy diet mostly plant based, with healthy fats, and not too much. Common sense approach is everything.
Pamela-Jean Kirsten DeAquair LaScoll I feel Lupus is a hormonally driven illness. I came down with lupus at the age of 12-I had just started my menstrual period. As it has been well documented most patients receive the diagnosis of this disease during ages of puberty and the ages of childbearing years. There’s also been much discussion of how menopause and your menstrual cycle itself affects disease activity and flares. Most women experience symptoms of lupus flare prior to starting their period, while a great percentage of women claim to have less disease activity once they have started and are going through the process of menopause. The last 10 years I have been in a state of major disease activity. I am 100% sure what put me there. I went through a very rigorous fertility treatment plan preparing me for egg retrieval so that my cousin could be my surrogate. In time on these drugs my body reacted horribly! As a result the doctor handling my case canceled without any discussion with my husband and myself the egg retrieval two days before due, leaving us childless today, out 12k, and so sick my entire life has changed permanently. I know there are many factors that play a role in autoimmune diseases. Clearly there is a connection between hormonal and environmental conditions with lupus. We have treatments for other hormonally related illnesses such as diabetes and thyroid conditions both of which I believe have a connection with what we put into our bodies., and yet so many patients seem to get their backs up when you start talking nutrition in the way of treating this disease. I feel that’s because this disease is so big and attacks so violently so many different parts of the body we are then looking for an answer that is as big as the problem. And when you stop and think about it just as putting gas in an automobile to make it run properly, doesn’t everyone’s whole health center around the food and nutrition we put in it to do the same? What are your thoughts on the subject matter? Ty.
Wow, what a question! Thanks Pamela! Yes, in the functional medicine world that I’m in, we do believe there’s a strong connection to Lupus and Hormones. I too have had extensive hormonal testing to make sure all was in right order. Here’s my thoughts. Due to the underlying inflammation which can alter the homeostasis of our body, it’s hard to place a finger on exactly what triggered the Lupus. Homeostasis of our body is nothing more than our body in balance. When skewed, we all respond differently due to our genetics, environment, and our lifestyles. Too many variables to consider to say that it is all hormones and nothing else. What I do know is that we can alter our hormonal balance favorably by affecting it with our food. With the toxic meds coupled with our crazy immune system, we tend to be overly burdened with toxins which like to reside in our fat cells. They then become the endocrine disruptors which can wreak havoc in the hormonal signaling, pathways, and production. Although you had mentioned the diabetes and insulin as well as the thyroid and synthroid but they too are involved in Lupus. Most of us have insulin resistance and at times have glucose intolerance. Many also have issues with thyroid, we may be low or too high and may even have hashimoto’s which is an autoimmune disorder attacking your thyroid. Point is again, to pull out and rather than getting lost in the pathology and altering a small piece by using meds or hormones, we need to first fix what we are eating, heal your gut, and improve your detox pathways and allow your body to recalibrate. I’ll point you to the elimination diet in our group under files or we have various step by step online programs or expanded reports that you can purchase at a nominal charge on lupusfarmacy.com
Jennifer Pollard: I keep getting reoccurring bladder & chest infections and went to the natural health store for some support – they sold me an immune boosting supplement but when I got home I was too scared to take it as I have read that anything that boosts the immune system can also trigger Lupus flares & should be avoided. Are immune boosting supplements safe for those with Lupus? Can you please explain why or why not? Thanks!
Hi Jennifer, thanks for the question. I would hold off on any immune boosting supplement that you get over the counter. The infections that you’re getting is from the bacteria, yeast, fungi, and viruses that infect you the host. I would look to getting a diverse probiotic strains to help strengthen the barrier of entry, which is your gut. Many with Lupus get recurring yeast and UTI, and various infections due to immune compromise. AS for immune boosting supplements, it’s ok to strengthen our immune system, I would question how and what they are doing that with. Immune boost is not necessarily a bad thing provided that you are being strategic, it all goes to the history of our illness where they feel that our immune system is too strong but it’s really that we have a broken immune system. Many supplement companies will try to market to us who are looking for some help and this is where I get a bit protective over you guys to one know where they are sourcing their ingredients and are they legitimate companies who have done clinical research to prove its efficacy.
Lori Koss: I was just diagnosed a week ago with lupus. I have not started my medical treatment yet. It is my guess that I have had lupus for about 20 years but no one could diagnose it. Along with lupus I have been on pain management for bulging discs in my neck, arthritis, disc issues in my back, carpal tunnel, …. Will my rheumatologist be able to also be my pain management doctor and prescribe pain meds? Also, does each person have a different form of lupus? I know my doctor mentioned my kidney results where high. Does that mean my lupus affects my kidneys?
Thanks Lori, welcome to the club I know it’s not the kinda club you sign up for but you’re here and we can help. I’ve been a physical therapist for over 19 years and during that time have treated thousands of patients. All the musculoskeletal issues like arthritis, bulging discs, carpal tunnel are structural issues that stem from not only the isolated joints that you mention but are driven by the underlying inflammatory processes in our body. As I mentioned earlier today, we have a inflammatory cascade that we trigger with Autoimmunity and when we’re in pain, guess what? We don’t move, we begin to gain weight, begin to feel bad about ourselves, all in the mean time, we are loading our joints and spine with excess weight which further perpetuates the cycle. Pain meds are a temporary solution, I’ve seen patients become addicted to such narcotics and form a dependency. I want to emphasize its not a long term solution. I have physiatrists that admit that they are killing their patients with such toxic meds and they hate it. They have to routinely screen their patients and comply with the licensing board to keep everything legitimate as there’s a huge black market for such addictive medications. Yes your Rheumy should manage all the medications, however, it’s likely you’ll be sent to the pain management clinic to manage those meds as the physicians are scrutinized if they are prescribing long term meds. As for different patients having different kind of Lupus? Lupus is lupus, how it plays out in our bodies differ in severity and the organs affected by it. If kidneys are affected, then likely protein in your urine would be measured along with dsDNA as well as other Lupus biomarkers.
Maria Olsen: Is it true that the lowest Prednisone dose an individual can be on is 4mg/day? I’ve asked my Rheumy to put me on 4mg/3mg alternating days. I’m trying to get down to the lowest dose possible, with the lowest possible side effects (flares) since I’ve been on the drug for 7 years. Now with Prolia for 2 years, I’d like to build up my bone strength again, which Prednisone made brittle.
Maria, thanks for the question. Medications have unintended consequences and while for Lupus it is necessary at times, one needs to weigh the long term use. 7.5 mg of prednisone is considered physiologic but long term use in any way is linked to too many side effects that can be scary. Let’s first discuss how corticosteroids work. Steroids are a group of biochemicals that make up hormones in your body. Of these steroids, cortisone, is a close relative of cortisol, which is produced by your adrenal glands and is considered a natural anti-inflammatory hormone. Synthetic cortisone medications like corticosteroids also known as prednisone, are some of the most effective treatments for reducing the swelling, warmth, pain, and tenderness associated with lupus. Cortisone is powerful in suppressing such symptoms. But due to the unintended side effects that can be potentially dangerous, it’s in our best interest to resort to it as a last resource. Having said that, if you’ve been on corticosteroids for a long time, then you’re adrenals have adapted to this external supply and stopped making its own cortisol and and as a result it may take a while to get its function back. Unfortunately, for us Lupus patients, due to the risks of flares, your doctor may feel it best to keep you on prednisone rather than allowing your adrenals to begin to produce its own supply. This is where the gray area of medical science taking over the body to create a whole different dysfunction in the name of “managing” your lupus and create another disease. One of the side effects of prednisone is the osteoporosis, avascular necrosis, glaucoma, diabetes, weight gain, water retention, etc. So to manage your osteoporosis, I would recommend a good supplement, and resistive weight training exercises to build bone.