Two doctor friends very excitedly called me (at different times) to let me know that my R.A. medications will prevent the dreaded Covid19 Cytokine Cascade. That’s where your body is overwhelmed by inflammation and your organs break down, leading to death. Death by inflammation … gah!
Then they said … well … you might get Covid more easily, but you are less likely to die from it. Where is the eye rolling emoji on this thing?
Stay safe everybody! Wash your hands and wear the mask!
Wow, it’s been a long time. I am doing well, and I hope you all are doing well too! Things are fairly status quo – and I am continuing on the same medical plan for the past several years.
In my infinite wisdom, I thought I should try a new form of exercise. I signed up for a series of Pilates classes. I figured a zero impact exercise like pilates would be perfect. Well, as it turns out I got such a severe cramp that I thought I dislocated my ribs. I ended up in the ER! Of course, nothing was wrong, it was only a severe muscle strain. LOL, so much for my big adventure!
Stay safe out there kids!
First off I should update that I have not felt this good in the past 5 years. My joints appear to be in great shape, and I’m playing more concerts than ever. My Rheumatologist said at my last visit that I am the “poster child” for early and aggressive intervention.
What’s different? Food! After going gluten-free a couple years ago, and feeling much better for it, my GP asked me to try going grain-free. I immediately lost that pesky last 5 pounds that would never leave, my abdomen is no longer swollen, and I’ve reduced my medicine intake yet again. Read “Grain Brain” by David Perlmutter, get tested for gluten antibodies – it can’t hurt, and it may actually help in many ways.
All that being said, it’s very hard to be upbeat about what is going on in the US these days. Affordable Health Care on the chopping block, the cost of medicine on the rise, doctors getting locked out of the US (read a fellow RA Blogger’s nightmare scenario here), and anxiety about the economy, and rising aggression against the most vulnerable amongst us.
I fear for the less fortunate in this country, I am afraid that the very people who hoped Trump would lift them up will only get stepped on. Paying higher taxes, without affordable health care, paying more for food/clothes, and even less employed than they are now. I sincerely hope that I am wrong.
As a follow up to my previous post … the Plaquenil did it’s job, testing showed that it has counteracted the “Lupus-like” markers created by the Enbrel. So get this, now I get to guinea pig a lower dose of the Enbrel. I’m using it every other week, along with the Plaquenil.
This has been going on for a few weeks. At first I felt AMAZING! It was my body saying thank you for taking less medication. I was so excited about it I thought “I must be cured!”. LOL, yeah right. I spoke to my sister, an RN who has struggled with autoimmune issues for decades, and she talked me down from the euphoria reminding me that these medicines are Preventative – keep taking them and you are much less likely to have a major flare.
OK, ok … so I’m not cured, but I am taking less medicine (for now) and feeling pretty good. Not as euphoric as I was a couple weeks ago, but still good.
So interesting … did you know that Enbrel can create a Lupus-like syndrome? My blood work has recently shown Lupus markers, at a very low level, but enough to put my Rheumy on alert. As a preventative measure I’ve been prescribed Plaquenil – that’s right folks, Malaria medicine. Oh my … medicine is sooooo interesting.
Enbrel®, Humira®, and Remicade® are anti-TNF-α therapies approved for RA Although these drugs have been found to cause drug-induced lupus in some people (reversible when the medicine is stopped), they may be effective in treating the arthritis that can occur in lupus. Lupus.org
Treatment with ENBREL® may result in the formation of autoantibodies (see ADVERSE REACTIONS: Autoantibodies) and, rarely, in the development of a lupus-like syndrome or autoimmune hepatitis … HealthCentral.com
Well the upshot is that I’m still OK, still playing my cello, and plugging away. We will see how things play out in the next couple of months. Fingers crossed!
Ever since my diagnosis in Fall of 2012 I’ve had a litany of suggested “cures” from well meaning friends and family. Going gluten free has always been one of them. Until my RA surfaced I was always very healthy and ate a healthy balanced diet high in produce. Local, organic, home made … seems just about perfect right?
Last Spring I was at my GP office and she suggested I stop eating wheat … really? Her too? She asked me to read Wheat Belly, and to stop eating wheat for a month and see what happened. So, what happened? Nothing happened … until I was out with a friend and we went out for BBQ. The next day I couldn’t walk down the stairs. As it turns out I seem to have mild wheat allergy. When I do eat wheat these days I can tell the next day – it aggravates my joints, causes digestion problems, and migraines.
These days it’s just Enbrel – I rarely use prednisone, and the migraines are reduced to maybe once or twice a month instead of once or twice a week. In your own quest for balance and good health don’t be afraid to try new things. Have a great 2015!
I learned today that one of my favorite foods is both stress reducing AND anti-inflammatory. That’s right folks … DARK CHOCOLATE is all of these terrific things, on top of being delicious of course. Although I have some daily, it’s clear that I’ll have to increase that amount. Read all about it here, and you know that if it’s on NPR then it must be true. Happy eating!
Memorial Day weekend. I was feeling good, the sun was shining, so I went to the garden to do a little weeding. Ya know … some days you should really stay on the sofa and delegate. Long story short, I fell on my hand and though nothing was broken it was severely bruised, my right wrist has hurt badly since. Stupid … stupid … stupid … I’m hoping this recent bout of stupidity passes soon!
The Enbrel is working for now, and except for the right wrist I’m feeling pretty good most of the time. I’m having what I understand to be a fairly common problem with an injection site reaction, but it is manageable and not getting worse each week, and am hoping that this gets a little better over time.
… Hello Enbrel … My liver had two bad tests in a row and my Rheumy pulled the Methotrexate (MTX). I had been feeling very run down, and after stopping the MTX I immediately felt awesomely amazing … for about 3 weeks. When the MTX finally left my system I then realized that the Humira was barely working for half a week, leaving me in a bad way for the remaining 1 1/2 weeks until the next bi-weekly injection.
On to Enbrel, a weekly self-injection, hoping that the “down days” are less. I managed through the transition with some very low doses of prednisone, I have such a low tolerance for this stuff that 2mgs a day works for me. The first few weeks seem promising, although there is an almost overwhelming sense of tiredness that has set in. After reading this post on R.A.Warrior‘s site I realize this may be due to removing MTX from the mix of meds.
Hopefully this all resolves sooner than later and I have the energy to get to the pool, and to enjoy my garden this summer.
It’s been a long time since the last post … basically I’ve just been really super busy. I have been keeping up on my reading however, and do enjoy everyone else’s blog updates very much.
I do feel a progression in my symptoms, it is now in my hips. However I haven’t changed my meds … yet. I’m wondering if it is time for a change, or if I should hold on to my current routine as long as possible. I hope I am NOT like the frog in the slowly heating pot of water … that doesn’t realize it’s heating to the boiling point until it’s too late.
Although I have a high tolerance for pain, I have a very low tolerance for change. Even a vacation, or unusually active schedule puts me in a bad way for a week or two. Eventually I seem to even out, but it’s getting harder and harder to dislodge me from my routine.