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.

For the Last Time …

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I was musing today, wondering if I’d dare to go on another cruise or even sit in another crowded movie theater. I was reminded of this post I wrote some time ago. In today’s uncertain environment, I think this post is even more valid than when I first wrote it. Enjoy.

When we’re growing up, we look forward to those fabulous “firsts” — the first grade, the first date, the first kiss — all kinds of new adventures.

As we move forward as adults, we start noticing the “lasts”. Some of these are intentional. A few years ago after spending a soggy week in Orlando with two 12-year-old girls, I looked my [now ex-] husband squarely in the eye and stated quite clearly that I had visited my last amusement park.

Some of these “lasts” are good things, like when you finally figure out it’s the last time you ever want to drink too much and pray to the porcelain god all night.

There are also some “nevers”. You know, those things on your bucket list that you’ll probably never do. I’ll never take up sky diving. I haven’t given up on learning to fly a helicopter or how to speak Spanish, but with each year that passes, those things inch closer to that “never” column.

But what I’ve come to realize lately, is that there are “lasts” that sneak by you and don’t realize it until it’s too late.  There ought to be signs or trumpets or announcements that, “Hey, this is the last time you’re going to get to do this, so pay attention and enjoy it.” Like having dinner at a restaurant only to have it close shortly thereafter. Heck, if you’d known it was going to close, you might have foregone the diet and enjoyed the world-famous dessert one last time.

I’ve had a pretty significant “last” come to my attention. And it’s something that I thought I’d do again, but I’ve come to the realization that I was wrong. It’s sad when that happens, when a chapter closes in your life.

With RA, some of those chapters close sooner than they should, and you get to enjoy firsts that you’d rather not: first dose of Methotrexate, first time to use a cane, first time you really can’t get out of bed.

The good thing about it is, there are still unread chapters in my book (and yours), adventures to be had, firsts (and repeats) that I really enjoy.

Thanks for checking in.

What July Means to Me and RA

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I was diagnosed with RA 12 years ago in July. That was the bad news.

The really good, wonderful, amazing news is that seven years ago this month, I became a contributor for rheumatoidarthritis.net. The site, along with several others dedicated to chronic diseases, is the brain child of the incredible folks at Health Union. Along with great resources, they truly bring the patients’ voices forward. Anyone with a chronic disease will tell you that connecting with other people who have experience with what you’re dealing with is invaluable. Through this association, I have connected with so many strong, resilient, passionate and, yes, funny patient advocates.

Health Union has honored me with a profile on their site. Here’s the link: https://rheumatoidarthritis.net/spotlight/interview-carla-kienast/

Thanks for checking in.

Any club that would have me …

Groucho Marx is credited with saying that he didn’t want to be a member of any club that would have him. That is, if the bar was set that low, he didn’t want to be associated with it.

That’s hardly the case for me. I once again find my blog listed on Healthline’s Best Rheumatoid Arthritis blogs. I couldn’t be more privileged to be included in this amazing group of terrific patient advocates. Here’s the link so you can check them out yourselves. The Best Rheumatoid Arthritis Blogs of 2020

Thank you Healthline!

Conscientiously objecting

I feel like I’ve badly neglected my poor blog. There are good excuses for that, but they’re just that — excuses. The main one being the virus that seems to have brought our entire planet to a standstill. Excuses aside, I thought I might give you a quick update. I think it mirrors what a lot of us are going through at the moment.

I recently had two follow-up telehealth visits with interesting results. One was on Zoom and the other was via a real telehealth site with all the medical disclaimers. It’s apparent that everyone, including our doctors, are making this up as we go. One appointment was with my rheumatologist (more about that in a later post) and one was the followup for my hip replacement surgery. Both doctors were generally pleased, as I am.

So what’s the deal?

My rheumatologist wants me to have my three-month labs done and my orthopedic surgeon wants me to come in for the 90-day X-rays on my hip.

Uh, no.

The lab I use is in a large hospital complex (where my doctors are) and it’s one of the national labs doing a substantial amount of COVID19 testing. Even if I used one of their satellite locations (not in the hospital), they’re still doing the virus testing. My doctor recommended waiting until sometime in May, but it still makes me nervous. Ditto the hip X-ray. My doctor has his own X-ray department, but he’s located in the hospital complex. This hospital complex was ground zero for the Ebola outbreak a few years ago and is a major site for COVID19 treatment. I told them I might be in sometime in May or June (when I get my labs done so I only have to make one stop). I’ve also just postponed my dental and dermatology appointments that were scheduled for mid-May.

I’ve always tried to be a good patient, but at this point, the risks outweigh the benefits. I had great lab results in January and I’m having no issues whatsoever with my new hip. I just see no compelling reason to rush into what could be a smoldering cauldron of virus particles.

I’ve seen other friends post about going in for their infusions. THAT makes sense. My situation, not so much. For now I’m staying put.

Hope that you’re staying put and staying healthy. Thanks for checking in.

8 Weeks and Counting

So it’s been eight weeks since hip replacement surgery and I’m doing great. I don’t even think about the fact I had surgery except when I (try to) sleep on that side at night or when I try to tie my shoe. Since I wasn’t even walking very well before the surgery (using a wheelchair about half the time even around the house), I’m just totally grateful for the amazing results and that I had the surgery before the #Covid-19 hit and all elective surgeries went on hold.

Life here in Dallas has been interesting. Like others we’ve faced tightened restrictions almost on a daily basis and the grocery stores have large swaths of empty shelves. At midnight tonight, Dallas County has upped its game and issued a “Shelter in Place” order, which means basically everything shuts down except grocery stores, pharmacies, and essential services. My husband has started working from home. (I figure they won’t find his body until after the isolation period ends …)

At least the weather here is (finally) going to be sunny and warm and, now that my hip is doing so well, I can get out and start walking again.

So many of us are at high risk due to our immune systems. Please be careful. Please avoid those jerks who aren’t following guidelines. (I understand that there are some idiots that actually sneeze/cough in the direction of older people.) Take care of yourself and connect whenever you can.

Thanks for checking in.

Survey Help, Please

You may have already seen this from other blogs but, if not, I encourage you to participate. It concerns the use of Hydroxychloroquine (e.g., Plaquenil) to treat RA or Lupus. I’ve pasted the request below.

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This is a SurveyMonkeys link:
https://www.surveymonkey.com/r/RHLVY6W
Help the world to fight Coronavirus!

Do you use Plaquenil, Aralan or chloroquine ?
A common drug, called Plaquenil, has been shown by scientists to block the coronavirus in test tubes.
Many people worldwide use this drug, or its generic Hydroxychloroquine (HCQ),  to treat lupus erythematosus or rheumatoid arthritis.
Other people use a similar drug (Aralen), chloroquine, for malaria or Amebiasis.
I work at the  University of Ferrara (Italy). Like many other nations in the world we are now hit hard by coronavirus. The hospitals are more and more stressed by the ever increasing number of patients. The pandemic is now expanding worldwide. Large scale studies for the efficacy of this drug against Coronavirus are not yet available.
Even if you are not using any of these drugs, you can be part of the solution!
Simply answer 3 questions and help to stop this deadly disease, called COVID-19!

Many thanks!