Actually SEE patients?

I’m all for telehealth visits. It’s been a lifeline during the pandemic and is truly convenient for those who have issues traveling to a doctor’s office. But at some point, doctors actually need to see patients. Hands-on, physical exams provide a depth of information that a virtual visit simply cannot. And while you might be able to put your swollen joint, rash, etc. up to the camera, it’s impossible for the doctor to closely examine your eyes, skin or other parts of your body.

Photo by Karolina Grabowska on Pexels.com

(Can you tell I’m perturbed?)

Last November I had a TIA (also known as a mini-stroke). It took me several weeks to even get an appointment with a neurologist and then it was a televisit due to the pandemic restrictions. During that call, we scheduled an in-person follow-up for June. Today the office called to change the in-person visit to a virtual one.

I’ve been doing fine since that one incident, but there comes a time when a neurologist needs to check your reflexes, examine your eye functions and check for other signs that a patient might miss. You simply cannot do that over a camera.

I’ve had other in-person visits with my PCP, my ortho surgeon, my dentist to name a few. However, there is still a cadre of providers staying hands-off.

I hope telehealth visits remain mainstream, but at some point (hopefully soon) doctors need to start seeing patients in person – or at least offer the option.

I hope that you, and your virtual self, are doing well and keeping safe. Thanks for checking in.

Winter storm, TMJ and RA

You may have seen the news that we had a major winter storm in Texas in mid-February. I was lucky in that I lost power for a few days (I camped out in a warm hotel room), but was otherwise unscathed. Literally thousands of Texans had devastating damage and many of these people are still dealing with the aftermath. One such person is my dentist.

It turns out that my dental checkup was originally scheduled for a day or so after the winter storm was supposed to hit. Knowing the roads would still be in bad shape, I had called and left a message that I would reschedule once things thawed out. When I called back, it turns out the dental practice is going to be closed indefinitely. The pipes had frozen in the office (which is in a standalone building). The frozen pipes burst and when they thawed, they caused a flooded office. The flood caused an electrical short. The electrical short caused a fire and the building basically burned to the ground. More than a month later they’re still in discussions with the insurance company with no idea of when they might get to rebuild.

I had planned to talk with my dentist about TMJ issues. I’ve had TMJ problems as long as I can remember. My jaw regularly popped and clicked whenever I ate and three or four times a year would get “locked” where I had problems opening my mouth. I’ve always been able to pop it back in place and go on with life. At the first of the year, this was happening more often and by the first of March, it was almost a daily occurrence. On March 17, my TMJ locked and I haven’t been able to get it to release.

Not everyone realizes that RA will attack any joint it chooses, including the TMJ. (A search of rheumatoidarthritis.net will bring up some excellent articles on the subject.) There are several things that can cause TMJ issues. Teeth alignment/bite is probably the most common. For people with RA, the joint and/or cartilage can also be damaged to the point the TMJ can no longer function properly.

After nearly a week of limited function and range of motion, I called my dentist. I won’t bore you with the details but it was several days of tracking down alternate resources and other referrals. Finally, my original dentist called me back and told me they had found a temporary dental clinic where they could see patients on an emergency basis and they gave me an appointment for today (two weeks after my jaw had locked up).

We don’t know anything yet. I’m in a temporary bite alignment splint to see if that will relax the jaw enough that the joint will realign. I talked to my dentist about my other joint issues (specifically the five that have been replaced) and explained that I was concerned the TMJ was also going to be a victim of RA. So I was sent to yet another dental facility and had 3-D X-rays of my head to see if we can determine the status of the joint. I go back to see my dentist in a week.

The other thing is that the TMJ falls in this weird alternate universe that is neither covered by dental or medical insurance. Each kind of insurance classifies it as the other kind of problem and won’t cover it. The only thing that is potentially possible is that if I have to have surgery (to basically replace the joint), it may be covered by insurance (if I can find a qualified surgeon who takes Medicare …).

It’s been a bit more than a year since I had my second hip replaced. Since my diagnosis, it seems like every year to 18 months, I’m having another surgery to repair/replace a joint. I am hopeful my TMJ isn’t the next one in line.

I hope that everything is aligning in your life. Thanks for checking in.

Vaccination Complete

Yesterday my husband and I received our second #Moderna vax, right on schedule four weeks after we got our first round. Other than a sore arm for me, we’ve not (yet) had any adverse side effects. The cosmic coincidence that we got our injections on the day that Texas “opened 100%” and lifted all COVID/mask restrictions isn’t lost on me. It will be two weeks before we’re considered “fully vaccinated” meaning we’ve had time to form the required antibodies.

I don’t necessarily feel safer, but I’m a lot less stressed. Since we registered (in multiple places) it seems it was a daily ritual to check the news to see how many doses were coming in, checking to see if there were other places to register, wondering when we would get an appointment. After the first shot, it was a worry if we would get a second appointment within the four-week interval, if Dallas County/City injection locations would shift, if the process we went through last time would change this time, etc. (Okay, I’ll admit I’m a class-A control freak.) All those questions/stress/concerns are now behind me.

In other news, Texas just opened vaccination appointments up for people 50+. I’m not only glad we’re expanding the opportunity, I’m glad that I don’t have to compete for appointment times with that much larger group of people. Our median age in the county is about 33 years, so we’re still working on the top half. (Note, in the graphic below, blue represents male and red represents female, so we are nearly equally split in all age groups.)

I hope that you are, and will continue to stay, safe. Thanks for checking in.

Finally – Help for Fatigue

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For many RA and PsA patients (myself included) fatigue is a major complaint. I know that one of the first signs that a treatment plan was not working as well as it had been previously was the onset of worsening fatigue. Unfortunately, since you can’t measure fatigue with a lab test, doctors and other healthcare workers might note it on a chart but otherwise may be uncertain how to address this debilitating symptom. Fatigue, like pain, is often viewed as simply a patient’s opinion rather than a clinical finding.

FINALLY, the FDA has approved a label change for one of the prominent RA/PsA medications to include treatment for fatigue. Simponi Aria, an infused TNF-inhibitor manufactured by @Janssen achieved this approval on February 25. This not only recognizes fatigue as a valid manifestation of the disease, it actually approves a treatment for it. I have personal experience with Simponia Aria and can attest to greatly improved fatigue symptoms. An article with more details can be found here: https://www.healio.com/news/rheumatology/20210225/fda-expands-simponi-aria-labeling-to-include-fatigue-in-ra-psa

When dealing with chronic diseases, breakthroughs like this that can really improve the quality of life truly provide hope and evidence that we are making progress in the battle. I’m delighted to share this information with you. Thanks for checking in.

Warnings for Xeljanz

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There is so much else to grab your attention these days it might have been easy to miss the FDA’s recent safety warnings for Pfizer’s JAK inhibitor, Xeljanz, which has been approved for RA patients as well as psoriatic arthritis and ulcerative colitis. These warnings apparently apply to the higher dose of 10 mg/day which, according to the safety trial, showed an increased risk for cardiovascular events and cancer. The safety trial applied specifically to Xeljanz produced by Pfizer. The other main JAK inhibitor on the market is Rinvoq produced by Abbvie, but I haven’t seen any related information for it. I suspect that the Xeljanz situation may raise the scrutiny on Rinvoq. A search already shows class-action lawyers lining up to sign up patients.

A good summary of the situation can be found here: https://www.pmlive.com/pharma_news/fda_considers_new_safety_warnings_for_pfizers_jak_inhibitor_xeljanz_1362988

This is tough news for patients for many reasons.

First of all, of course, are the safety concerns. Taking any kind of advanced treatment such as JAK inhibitors or biologics raises the stakes for increased side effects and safety issues. It especially raises concerns for patients who have been on the medication for a time.

Second, is that it will no doubt impact the use of JAK inhibitors to treat a range of debilitating diseases. This removes a powerful weapon in the fight against RA, PsA and UC.

Third, JAK inhibitors are taken by mouth — they don’t require injection or infusion. This is a much easier treatment option that removes barriers to treatment for those patients who have issues with injected or infused biologics.

The good news is that this kind of safety evaluation does happen and raises appropriate concerns. The bad news is these types of findings tend to make people even more cautious about undertaking other kinds of treatments.

The final determination is not yet in from the FDA. It may be that the lower dose may continue to be used or that the medication might preclude certain classes of patients (e.g., those who are older or have existing conditions).

Update 2/14/2021: A couple of updates, and I’m quoting an article from Medpage Today here. (1) The warnings apply to both the lower and higher doses of Xeljanz. (2) There is no determination yet, awaiting full data analysis, “but the FDA is not yet prepared to take action, which could include ordering new label language, requiring a risk evaluation and mitigation strategy (REMS), or even pulling the drug from the market.” The FDA has encouraged patients who are on the drug to stay on the drug and/or discuss with their doctor. Here’s the link to the article: https://www.medpagetoday.com/rheumatology/generalrheumatology/91051?xid=nl_mpt_SR_specialty_update_2021-02-14&eun=g1030170d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=SpecialtyUpdate_Rheum_021421_%7BOpt:0060z0000244tvpAAA%7D&utm_term=NL_Spec_Rheumatology_Update_Active_US%20only

I will update further as I see additional news.

Today’s Word – “Enough”

As a communicator I’m fascinated by both languages and words. Today I’m veering off my normal medical topics to focus on something more linguistic.

The man had a lean, rangy, hard-scrabble look about him. His pressed jeans and starched shirt made me think he haled from west Texas or perhaps Oklahoma. Certainly somewhere west, and hot, and dusty. Based on his age, I guessed he’d been born to Depression Era parents and probably served in WWII and perhaps even Korea. We were at one of those open-air things where food vendors circulated with bite-sized samples of their wares. When offered one, I heard the man reply, “Thank you, but I’ve had enough to eat today.”

I thought to myself that the man probably hadn’t had enough of anything except hard work his entire life. But I understood what he was saying. I was mainly raised by a single mom and, on more than one occasion, had been told that I’d had enough to eat, even though my stomach thought to argue otherwise.

All this ruminating made me think about the word “enough”.

For such a small word, it creates a clear, powerful dividing line between need and want. You might have enough food to eat, money to pay the rent, time to get to where you’re going, data to make a decision, but that doesn’t mean you don’t want more. Maybe a little buffer. Perhaps a little extra to make sure you’re not hungry, broke, late, wrong. But there is no buffer in “enough.” “Enough” is a true measure; there is no extra. No Lagniappe as they say in New Orleans. “Enough” is sufficient upon to itself.

So how do we know when enough is really enough? As the quote from Atticus goes, “Just enough crazy to make her interesting.” Beyond that, it becomes “more than enough.” Sometimes it’s hard to tell when the “enough point” has been reached, but I guarantee we all know when we don’t have enough.

Beyond dividing “need” and “want,” the word “enough” also serves as a tipping point. It’s that moment when it becomes clear that something different needs to be done. A change must be made. People will change jobs, homes, spouses, nearly any aspect of their lives when they’ve “had enough.” Interestingly, I think there is a lot of medical advice sought at the “enough” point. There comes a time when a person will decide they’ve had enough dealing with pain or other symptoms that it warrants seeing a doctor.

I’ve always thought of “enough” as an almost invisible word. One of those fillers in a sentence that take up the space between the first capital letter and the final period. It is unassuming. It’s an introvert. It certainly doesn’t have the panache of its synonyms such as “watershed moment.” “Enough” doesn’t seem important enough,  dramatic enough, or intense enough to carry the weight of transformative events. (See what I did there?)

Like many introverts I know, though, “enough” carries tremendous meaning and does so concisely.

I hope you have enough of not only what you need, but also what you want. Thank you for checking in.

Further COVID-19 Vax Info

If you’re not aware of Creaky Joints, they’re one of my go-to places for trustworthy information on RA. They have an entire section about living with RA and dealing with the pandemic, including the most current info on the vaccines and a wealth of resources to answer questions and provide support. Link is below.

On a personal front, like many places, the demand in Dallas for the vaccine is outpacing the supply and there isn’t a lot of organization. We have a “provider map” for Texas that lists the places you can get the vaccine and how many doses of which vaccine(s) they’ve received. While neither my PCP or rheumatologist have received a supply, I was pleased that my local pharmacy has started receiving some of the Moderna vaccine. While I will get the vaccine, right now, I’m committed to staying put until things settle down. I’m not willing to go to the County Health Office, and the private suppliers are getting wiped out quickly. If you’re interested, I’ve put the link to the Texas availability map below as well.

I am hoping that you and yours continue to stay safe and healthy. Thanks for checking in.

https://creakyjoints.org/category/living-with-arthritis/coronavirus/

https://txdshs.maps.arcgis.com/apps/webappviewer/index.html?id=91ac7fb5e5fd47e7ada4acfe4a05920a

The Autoimmune/Vaccine Irony

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First, I need to make an important disclosure. This is not medical advice. This is anecdotal information gleaned from my own research, discussions with RA advocates and medical professionals. You should always seek appropriate input from your healthcare team when making a medical decision.

Photo by RF._.studio on Pexels.com

Like so many of us, I’ve watched the development of the COVID-19 vaccine and counted the days until I thought my “group” would be in line for the first of the injections. My husband and I, grounded from travel for the first time in decades, carefully review the 2021 calendar wondering when (and where) we might feel safe traveling.

But, as with all new things, there come questions.

People with autoimmune conditions (either suppressed due to disease or medication, or overactive — such as often occurs in conditions such as diabetes and untreated rheumatoid arthritis) fall directly in the “questions” category.

I’ve spent the last few weeks researching, conferring with other RA patient advocates about what they have been told, and have had conversations with my own healthcare team. What I’ve learned surprised (and dismayed) me. Having witnessed first-hand the positive effects of small pox, polio, measles and other vaccines, I have great hopes for the COVID-19 version. But at this time (and I emphasize at this time – until we get further data) the input I’ve received is that people with compromised immune systems should not yet get the vaccine. Since we’re some of the most vulnerable, this just seems so wrong. (And, again, I encourage you to talk to your own doctor about your own circumstances.)

There seems to be three recurrent reasons for this guidance:

  1. People with suppressed immune systems may not develop sufficient immune response for the vaccine to be effective.
  2. People with compromised immune systems were not included in the test groups in sufficient quantities to have good data on effects and effectiveness.
  3. People with overactive immune systems are at risk for elevated inflammatory response, including possible cytokine storms.

In addition, the timing of any medical treatments (like biologics) that impact the immune system must be considered when taking the vaccine. Delaying biologics or similar medications can have a two-fold effect. First, the underlying condition (like RA) goes untreated/uncontrolled. Second, delaying the medications allows the immune system to resume a hyperactive state, which raises the risk for adverse effects from the vaccine (see #3 above – cytokine storm).

Based on the current rollout rate of the vaccines, many of us will have time to assess the data and get additional guidance from our medical teams before “our turn” comes up. But there are others (including those in my close group) who work in hospitals, schools, and other high-exposure environments who are balancing not only health concerns, but job issues.

Bottom line: We need this because we are highly vulnerable, but we shouldn’t have this. (?????????)

I’m blessed that I can continue to hide at home and monitor the data that is already starting to flow. I offer my support to those of you who are in more immediate circumstances.

A final word on the immediate vaccines. I’m used to the vaccines that inject a dead or weakened form of the virus (flu, mumps, shingles, etc.). The vaccines being administered at the moment work differently. These vaccines are messenger RNA (or mRNA) vaccines. And while they’ve been extensively tested over the years with good safety records, they’ve never been rolled out on a wide-scale basis before. If you’re interested in how they work, here’s a link to a good article from MedPage Today. It’s a bit technical but there’s enough general information that almost anyone can get an overview of the vaccine’s mechanism. https://www.medpagetoday.com/podcasts/trackthevax/90085

As we close out the truly amazing year that 2020 has proven to be, I want to wish us all a safe, healthy, and more prosperous year in 2021. Thank you for checking in.

Lights, Sirens, Paramedics – Oh My!

I started not to even post about this situation because I’m not really sure what the deal is, exactly. That being said, anything with lights, sirens and paramedics is quite an exciting event and probably deserves at least a little attention.

The short version is a couple of days ago I got transported via ambulance to the hospital emergency room with stroke symptoms — suddenly couldn’t communicate, had severe coordination/walking issues, etc. although I didn’t have the facial or body weakness.

Even after the extensive battery of tests they’re not 100% sure of what’s going on. The good new is, they know, definitely, that it wasn’t a stroke because there is no brain damage. They think it might be a transient ischemic attack (TIA) which is like a mini-stroke, but is a temporary situation and doesn’t cause brain damage. My ER doctors compared a TIA to a stroke like chest pains to a heart attack. A TIA isn’t a stroke (just like chest pains aren’t a heart attack) — but it’s an indication that a stroke might be on the way (like chest pains may point to an impending heart attack). The reason they’re not sure is that I was still having symptoms (difficulty speaking) when they were doing the imaging and nothing showed up. They should have seen something if I were in the middle of a TIA when they were looking at my brain.

After hours of being poked and prodded and scanned, all my bits were working again so they gave me the option of staying overnight for more of the same, or going home and perhaps doing some follow-on outpatient stuff. I went home and slept in my own bed, none the worse for wear except being bruised from fingers to armpits on both arms from them trying to find a vein.

But it was really weird. I’m used to pain being a signal that something is wrong — like RA hurts when it’s eating your joints. But I just started feeling weird out of the blue. In the middle of typing an email I got lightheaded, suddenly couldn’t type, and had blurry vision. Then I discovered severe issues trying to walk and talk. I described it as being feeling like I was really falling down drunk (not that I’ve ever been there — a friend told me …). Fortunately, my husband called 911 and, since we’re literally within walking distance of the fire station/paramedics, they were here momentarily and off we went. Helpful hint: if you’re a hard stick, don’t let them try to start an IV while you’re dodging your way through traffic.

I wasn’t ever really scared, I just thought it was really weird. I’m still not terribly concerned (although I probably should be). My husband is freaked because he’s been reading all the dire warnings on the internet. (Second helpful hint: don’t freak out over stuff you read online.) But I do now have to set up a plethora of follow-up visits with my PCP and a new neurologist.

What can I say? I feel fine. They didn’t really find anything wrong. Imaging and labs all say I’ll live forever. I’m back to my normal chaos without really being worse for wear. But now I can check riding in an ambulance off my list of things to do. It really was quite exciting.

Hope your life is as calm or exciting as you’d like. Thanks for checking in.

Remission? Omission? Confusion?

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So my lovely cousin (who was actually my long-lost cousin for decades until Ancestry.com reunited us last year) rightly pointed out that it’s been awhile since I’ve posted. I guess I’ve just not been sure what to say and COVID fatigue has generally zapped any enthusiasm/energy to say it. A great part of not knowing what to say is because my uncertainty of where I am in my RA journey.

As a bit of background, I was diagnosed 12 years ago with seronegative RA – meaning I don’t have the definitive RA ‘marker’ in my labs and my other lab results have always been normal. So I’ve always wondered if I truly have RA. I’ve basically been on continuous treatment since that diagnosis although that hasn’t prevented joint damage. I’ve had five joint replacements and two spinal fusions plus significant arthritic changes in my non-replaced joints — hands, elbows, ankles, feet. I’ve been on about a dozen treatment plans and, while I generally felt better starting a new medication, it tended to wear off quickly.

I had my last biologic infusion in November 2019 — to which I had an allergic reaction. It’s a biologic I’d been on in the past, but we’d upped the dosage to the higher Psoriatic Arthritis level which no doubt caused the reaction. I was having my hip replacement in January 2020 and since I’d have to stop treatment in advance of the surgery, there didn’t seem much use in starting something new.

During my July televisit with my rheumatologist, I told her that I really didn’t feel that much worse being off treatment. My morning stiffness is somewhat worse. But interestingly, I have a lot less fatigue (which I always suspected was a side-effect of the treatment anyway).

One thing I have noticed is how much time I’m NOT spending on healthcare visits. I was seeing my rheumy every 90 days. I was having labs every 90 days. I was having an infusion every six weeks. I was dealing with pharmacies and appointments and insurance on a continuous basis. While I have other health issues, RA was clearly dominating my life. Add on top of this, the amazing amount of time I was spending blogging, writing for medical sites, serving on patient advocacy boards, etc. I had clearly become a “patient expert.”

But actually that was the plan. When I could no longer work full time because of health, I had decided my next step was to devote more time to patient advocacy, so at least that part was a matter of choice.

The question is, where am I now? Am I in remission? No, I don’t think so. There are definite signs of inflammatory arthritis. It might have taken a step back, but it’s still part of my life.

Was I perhaps misdiagnosed in the first place – an omission of fact-finding? My official diagnosis is still seronegative RA. When I asked my rheumy about it a few years ago, she indicated that being seronegative, it’s impossible to be 100% sure. But yes, I have systemic arthritis — not just osteoarthritis which is wear and tear on joints (although I have that as well). At the same time, the pathology report on my recently replaced hip joint didn’t show any evidence of RA.

So is there confusion? You bet. But I can’t say that I’m unhappy or concerned about it. Yes, I’m probably having joint damage as we speak. But the evidence (five replaced joints) tells me that being on treatment with all the time, money, and side effects, didn’t really prevent the previous joint damage so I’m not sure it would prevent it now. And after 12 years, I’m enjoying the break from being a full-time patient.

My rheumatologist and I have discussed my going off treatment as long as I’m comfortable with it. At the point I decide it’s time, she and I will have another discussion about restarting treatment. And I know that time will come.

But let me be clear. I am not encouraging you to go off treatment. I am doing what I always do — have an honest discussion with your rheumatologist about your symptoms and preferences. RA is a serious, often debilitating illness. Any changes in your treatment plan — including taking a break (especially taking a break) — should be done so with your doctor’s approval.

So other than that, I’m basically self-isolating as much as possible to avoid COVID exposure (our numbers here in Dallas are definitely on the rise), and keeping well. I truly hope that you and yours are also well and finding ways of coping with the current unsettled environment. Thank you so much for checking in.