Hi, my PMR friends!
How are you doing this week? I hope that you are having a pain-free time.
Today, I am a bit all over the place, but I hope to get a point across.
My point is that the journey to PMR remission can be a curvy one with crossroads, potholes, and roadblocks along the way.
Lately, I feel like I have been going in circles, like the road in the picture above, trying desperately to get to the finish line of my PMR journey.
I will explain more in a bit.
This past month, I participated in several PMR research studies. I am very happy to help advance medical science, especially for PMR, which is so often misunderstood. So I gladly signed up.
The first study interview was pretty straightforward about my history. Then I was asked to give blood samples which amounted to 11 vials of blood! Although I thought that was a bit excessive, they compensated me well with a $100 MasterCard.
The 2nd research study was much different. Luckily, there was no bloodwork involved this time. It was done by zoom, where doctors, pharmaceutical folks, and drug companies could listen in and ask questions to the moderator while she and I talked on camera. These questions were primarily touchy-feely ones about how I felt about the disease, my doctors' response to my condition, and my opinion of their response. For this study, I would receive $150 for my time.
I usually am a woman of few words. I typically express myself more on paper than verbally. But in this particular instance, I could have gone on forever. I had a LOT to say. They even asked me if I minded going beyond the agreed-upon hour interview. We talked for about an hour and a half, and then the moderator had to go to another interview. The moderator asked me to do an extended interview at another time for additional payment.
I felt that it was so important to get the word out about all of the young PMR sufferers who doctors do not believe have the condition due to their age. Also that there is a need for alternative medications to Prednsionse due to all of the terrible side effects.
A strange part of the interview was the pictures that would pop up on the screen, and I would have to relate to one of them.
Like the person taking some psychiatric test, they expected me to pick a picture and describe how it made me feel pertaining to PMR. Unfortunately, I never could find an image that reminded me of my PMR journey. The moderator seemed surprised, so she then asked me to describe my own picture.
The first word that came to mind was "drowning".
Even though I may feel like I am drowning at times due to PMR, it was not quite the right word for how I felt.
So I deliberated for a few seconds and changed my word to "rock pile".
I feel as though I keep having rocks piled on top of me with all of the negative aspects of my PMR. The disappointments, side effects, and setbacks weigh me down and keep piling up. So, yes, I think that rock pile is a good word to describe my PMR journey.
Let me illustrate an example of my current "rock" that was piled on.
I have worked SO HARD to get down below 5 mg of Prednisone. After being stuck at 5 mg for a year, I thought I would have to "stay on steroids forever". I have to admit that my doctors have slid that phrase in a few times. But I refuse to give up yet. So after changing my steroid to hydrocortisone in hopes of "waking up" my adrenal glands (I've been diagnosed with adrenal insufficiency), I had gotten down to a mere 3 mg. I was nearing the home stretch.
My goal was to be off the steroids by the end of the summer.
I am scheduled for my ACTH stim stress test in 2 weeks to see if my adrenals have indeed started to wake up. If so, I will get the green light to taper off the steroids from my endocrinologist. This week I was to try and get to the 2 mg equivalent of Prednisone with my hydrocortisone (they have a different dosage equivalent).
Being so close to the finish line was giving me hope!
BUT then this week, I came to a detour in my PMR journey that once again derailed my progress...
I am currently pain-free. This is always a blessing, but it is not really a win when it is due to having to increase steroids due to illness, especially when trying to wake up your adrenal glands (with the hope of getting off the steroid, which is wrecking your life).
I just returned from an awesome weekend with old college friends and our husbands. We rented a cabin in the woods where we went for casual walks, played games, floated in tubes on the lake, ate great food, sat around the campfire, and generally enjoyed each other's company.
I savored the weekend without much pain and stiffness, and although I took a daily nap (that's what vacations are for, right?), my energy was good!
When I got home, I was not surprised when I felt tired and had a horrible headache the next day. I know that if I over-do-it, I often pay for it afterward. I usually just rest until I feel better.
In the past, I begin to come around by afternoon when my steroids are fully in my system. This time, I got steadily worse. I was still sleeping by the afternoon and was nauseous and lightheaded. I am familiar with my symptoms of adrenal insufficiency and knew that I was having low cortisol, so I took an extra dose of my steroids (as recommended).
I ran a fever the next day, so that was my clue that it was not from overdoing it but that I was actually ill. Sometimes it is very hard to tell if I am having adrenal crisis symptoms or am sick. But fever is a dead giveaway for illness. So I self-tested for Covid even though I had no congestion or cough. The test was negative (and the same the next day when I tested again).
When you have adrenal insufficiency and are ill, you need to triple dose your steroids to keep your fake cortisol (which is the steroid) levels up to cover the stress the illness is taking on your body. I switch back over to Prednisone when ill, as it lasts longer in your body and is easier on your stomach in high doses.
So now I am back to 15 mg of Prednisone to get through this illness.
To make a long story a bit shorter, I ended up having Lyme Disease.
I still am running a fever, so I will need to continue higher doses of Prednisone.
Unfortunately, I have to cancel my ACTH stim test to see if my adrenal glands are waking up as the higher doses of Pred have now knocked out my adrenal glands once again.
That is a hard pill for me to swallow at this moment. Being able to see if my adrenal glands are working well enough to get off the steroids has been a monumental step to freedom for me from these dreaded steroids.
It may be a while until I get down to a low enough dose again to have the test.
I was so close to the finish line that I could taste it!
What can I say? I need to let go of my current goal to get off the steroids soon as I have no control over this last setback, although it is very disappointing...
I have no choice but to keep plugging along and hoping for the best. I pray for no more delays or complications.
Let's hope that you have a smooth journey to PMR remission. I know it happens. I have heard from others in our Facebook support group that you can get off the steroids without too much trauma.
Next week, I promise it will be a happier topic. My trip to Ireland was WONDERFUL, and I want to share it with you.
Take care, my friends.