We’ve got exciting updates, fresh faces, and some serious miles ahead. Whether you’re training for your next race or just getting started, we’ve got something for everyone.

*New treatments & therapies (do they work?)

*Toxicity Buildup

*Winter prep…taking inventory

We all know by now that Sjogren’s disease has no cure…yet. That being said there is constant research, seeking answers and advancements in the world of therapeutic care. One of the most recent treatments to show promise is a new drug known as DAZ ( Dazodalibep). This treatment differs from others as it targets and focuses on B cells. Clinical trials of Dazodalibep thus far have shown much promise in slowing disease activity and reducing many of the manifestations associated with Sjogren’s, particularly muscle pain and fatigue.

While this new drug has not yet been approved by the FDA, it is the first new drug to show signs of being able to modify disease activity vs only managing the symptoms. So, how does this new drug work? Well, according to Nature Medicine DAZ blocks the very signals that trigger the disease’s autoimmune response. This is groundbreaking!! A medicine that can (possibly) directly target our pain signals would be monumental. It’s a relief to be able to reduce or alleviate one symptom, such as the dry, gritty eyes or the aching of a flare rash, but to be able to block pain signals precisely…. greatly reducing the aches and irritation? That friends could transform the quality of life for so many.

Phases 1 and 2 of clinical trials have now been completed, with phase 3—conducted by Amgen—is getting underway and actively seeking participants. If this is something you may be interested in participating in, you can find more detailed information at Amgentrials.com OR clinicaltrials.gov

#medicine #clinicaltrials #Sjogrens #Amgen #science

Books

Could you be suffering with prescription drug toxicity? Let’s talk about it.

Recently I’ve had some challenges on my Sjogren’s journey. One of those challenges was what we now know was an adverse reaction to one of my meds and my body rejecting the buildup of being on several at one time. Pharmacology can be tricky. Often the very medicines designed and created to alleviate one symptom, may cause the onset of others.

Over on IG, posted about some of the reported downsides to a medicine many Sjogren’s patients are prescribed known as Methotrexate. This medicine is often prescribed as your “maintenance” medicine, alongside a few others. The thought process has been that Methotrexate, an immunosuppressive drug, may help alleviate associated symptoms of dry eyes and mouth. Based on my personal experience(recent) and the clinical trial data I have researched, there is little evidence to support or suggest that this medicine, which is a form of chemotherapy, has any positive effect among most Sjogren’s patients.

I’m not a physician, but as a wellness professional and certified, long-time survivor of this disease—PhD level—I do not understand how or why this medicine is used to treat this particular disease. The side effects in my case were 10x worse than the symptoms. One look at me and my provider was certain the combination of medicines had taken a horrible toll on my body. Pharmacology can be tricky. There’s no surefire way to know what will lor will not work from one patient to another.

Ingesting seven medicines daily can take a serious toll on your digestive system and overall health, both mental and physical. So you may wonder, how would I actually know if I’m experiencing toxicity buildup from my meds?? Again, there’s no one thing to make that determination, but I would say you must be in tune with your body at all times. You have to pay attention and lookout for any new or different reactions when a new medicine is added to the program. In my case, I believe in trying to address multiple issues at once, my body just couldn't handle steroids, statins, anticonvulsant and immunosuppressive (plus a few others) was simply overwhelming. The nausea, inability to hold down food, and debilitating muscle pain & weakness left me feeling like a zombie. On my next visit , the decision was made after reviewing my lab results, to give my body a break. A “drug holiday” of sorts she calls it. Maintaining organ health with autoimmune diseases is a big factor and for that reason in addition to my adverse reaction, I was taken off of those drugs—while still needing two newbies to address completely different issues—while we watch, wait and determine the next best course of action.

Remember to always keep your physician abreast of what you’re experiencing. Be as descriptive as possible. The nausea I’m used to for example, was enhanced by 10 times after being on this round of meds for a few weeks. I had to take note of when I noticed a change. How it actually felt. How many meals could I hold down (that was zero by the way) and how my muscles felt day to day. This is a lot I know, but as my friend Magdalena ( @hippie_abuela) says, we have to nurse ourselves. It’s hard enough being unwell, it’s even harder to be your own nurse ALL. THE.TIME.

Just know it’s not in your head, there’s nothing “wrong” with you. Your body just may be screaming that it needs time to detox and start again.

Living with a chronic illness, certainly one that impacts your mobility means doing your best to always be prepared. Winter Prep will be a constant throughout the month as temps continue to drop and weather patterns are inconsistent at best. In my home state of GA temps have fluctuated from lows in the 30’s to highs in the 70’s all in the same week. Hurricanes throughout the Caribbean and flooding in New York are just a few examples of why I repeatedly urge my fellow Spoonies to make every effort to be more than prepared for the coming winter.

A drastic change in temps often means the triggering of a flare. Where are you going in a flare? No place but the hospital if anywhere at all. Inclement weather also means, depending on your location, more of a challenge getting medicines, food etc. if flooded or snowed in. So, just FEMA and other agencies do, I urge you to begin taking inventory of those more common, day to day items and tasks, and make sure you’re stocked as much as allowed on your medicines, even the OTC ones. I needed aspirin the other day and the store was out, the pharmacy was out. Basic, everyday aspirin—out of stock. It’s easy to say, oh I’ll run out tomorrow, or I can hold off on that for now. No, you really can’t.

My flares hit fast and hard. If I happen to get down and in need of something, it will usually have to wait. You know the drill friends, aches, pains, fever and fatigue that feels as if you haven’t slept in a month. Whether it’s something you can pop in the oven quickly, medicine, toiletries—-lip balm, whatever it is that you feel you use often and need, please begin gathering those items now. The holidays are just around the corner and with the current landscape being as it is, only Heaven knows what that may look like. I can’t do crowds and have no desire to be out in the wild fighting for a bottle of cold medicine. Nope, not me. Our bodies are fragile and our energy on reserve. Start preparing your personal needs now and then you can move onto your swelling and other areas. Make your needs a priority now. Until next time friends. ;0

Did you know that United Way & Lyft have a partnership? With cuts to so many programs, know that there are still resources available. If you find yourself in need of transportation to essential services—medical, food, employment, financial…you can dial 211 and request a ride. The program is called Ride United. Make your request and a driver will pick you up. More information can be found at Ride United's Transportation Access: Reducing Travel Barriers | United Way Worldwide. #rideshare #Lyft #free #transportation

Keep advocating & showing up for yourself—you matter!! As things swiftly change around us, don’t panic—-prepare. Know that I am doing my best to provide useful resources & information, to help weather these storms. Be blessed my friends. Til next week

Netta-Red Clay Lotus Wellness

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