Diagnosis Update

Isn’t it always the case when you have an autoimmune disease that there are multiple updates over the years? Like either a change of diagnosis or an added diagnosis. I follow so many people on Instagram with the same experiences. This week I had an appointment with my rheumatologist (and a resident, so two docs which was fun – by the way I love that the hospital I go to is a teaching hospital because I think that makes everyone work a little harder to provide excellent care), and of course there is an update to my diagnosis.

Image from: https://www.niehs.nih.gov/health/topics/conditions/autoimmune/index.cfm

Lets travel back a bit. First I was given an incorrect diagnosis of gout back in 2015 by my GP. Fast forward to February 2016 when I first saw my rheumatologist, ran some tests and then a month later gave me (maybe a little too quickly) a diagnosis of lupus. Fast forward to June 2016 and she added fibromyalgia to the list. Then we skip over to November 2016 and she decides that I don’t qualify for a lupus diagnosis and I am a “mystery.” So I have remained with a fibromyalgia diagnosis since then.

Me back in 2016.

Now my diagnosis has been updated to Undifferentiated Connective Tissue Disease, which upon looking up what exactly that was, makes a lot of sense. So what is UCTD? It’s a systemic autoimmune disease that doesn’t quite fit the criteria for any differentiated autoimmune disease – like lupus, rheumatoid arthritis, or scleroderma, etc. I’ve read some different statistics on it, and it seems that around 25% of rheumatology patients have UCTD, and only between 20-30% of patients will eventually get a diagnosis of lupus, RA, etc. Symptoms usually include high ANAs, arthralgia/myalgia, arthritis, Raynaud’s, and fatigue, among a few others.

Image from: https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

My symptoms include consistently high ANAs on blood panels that are taken every 6 months, arthralgia/myalgia, I don’t quite get full-blown Raynaud’s but certainly very red and slightly swollen fingers in the cold, sometimes numbness in my fingers or toes, and fatigue. So, while I don’t fit the criteria for lupus, I certainly fit the criteria for UTCD.

Image from: https://www.medical-labs.net/anti-nuclear-antibodies-ana-3413/

Now how does this make me feel? Honestly, a sense of relief. I am happy to have a diagnosis again, and one that seems to actually fit what is going on. My rheumy is going to fill out the paperwork I need for my work coverage (because they’ve been after my sick days), which also makes me feel relieved. Basically, I feel like it’s good to get a diagnosis because the waiting game on diagnoses can be anxiety-riddling experiences as I’m sure many of you know.

Relieved at my diagnosis but missing my baby.

I also want to give you an update on Spike, because last week I mentioned he was at the vet. Unfortunately he had to be put down. I am heart-broken as I’ve lost my best friend.

Hydroxychloroquine & Covid-19 Deaths…What Does it Mean for Us?

As many of you probably recall, hydroxychloroquine and chloroquine, both of which are antimalarials and often used in the treatment of lupus/SLE were being tested a few months ago as a potential treatment for Covid-19. US President Trump of course quickly jumped on this bandwagon proclaiming that it was a “game-changer.” This was said, of course, as testing was being started, not because of results of testing that had finished. As a result, I remember seeing many Spoonies, particularly those with lupus panicking because they couldn’t get their medications as quickly. And to be honest, I quickly went and refilled my own prescription. Though I’m only borderline for lupus, my rheumatologist kept me on the drug as it seems to have helped my symptoms over the past few years.

Now, results of the first study have been reported in the medical journal The Lancet. And those results aren’t exactly great… Of those patients who received hydroxychloroquine or chloroquine as a treatment, many of them ended up with heart problems and died as a result. So my question is, what does that mean for those of us who are regularly prescribed these meds? As North America starts to open up again (too soon here in Ontario given our daily cases, and WAAAAY too soon in the States given that they haven’t come close to flattening the curve, does that put myself and everyone else at a higher risk of death if we do get Covid-19?

Good thing I stocked up… bad thing it could be dangerous.

Unfortunately from what I read in news articles, I couldn’t find an answer. And no, I haven’t read the study itself in The Lancet (I can only read so many journal articles in a week and I have to read a lot of them for school), so I don’t have an answer. It does make me weary though. I didn’t want to get Covid-19 in the first place, but now I’m feeling more apprehensive about it. I’m very curious how my other Spoonies/Warriors are feeling about all of this and what precautions everyone is taking. Last week I was told to expect to be back at work in the next 2-3 weeks, and I work with the public. And while my company is providing masks to employees, we already know that is just to protect others, and masks don’t actually protect us, which means I have to trust the public to come in with masks as well (based on what I’ve seen, I don’t trust most people). At the same time, as a furloughed employee, I have to return to work when called in. Quite the predicament.

Image from: https://www.lehighvalleylive.com/acts/2020/05/read-my-lips-coworkers-create-clear-masks-for-hearing-impaired-manager-of-lehigh-valley-best-buy.html

Here is the link to a news article from the Washington Post about it:

Washington Post: Hydroxychloroquine Study

I’m hoping more information comes in about hydroxychloroquine and Covid-19, and what the hell that means for us. I’d love to hear your comments and thoughts on all of this, so please leave a comment, send an email (janeversuspain@gmail.com) or DM me on instagram (@janeversuspain). Stay safe.