Webster Art

Long Covid and PMR success story

If you know me in person, you’ll know that I got Covid for the second time in April of 2023. I got it while leading 5.10 splitters at Indian Creek. I was in such good shape that I thought it was just sore knees from all the hiking.

I drove home OK but landed on the couch in full blown Covid for a week. Sue caught it and we sat on opposite ends of the couch with flu like symptoms: weakness, bronchitis. Mine were compounded with sore joints to the point where I could barely walk and sleeping was painful due to the sore neck, shoulders, hips and knees.

After a week on the couch the flu like symptoms went away but the joint pain lingered and would flare up and down. At that time I thought of it as Long Covid, partly because the exact same symptoms happened in 2020, but they all went away in a week. Here is a longer version of my Long Covid and Poly Myalgia Rheumatica (PMR) story. The short version is that I suffered with increasingly bad joint pain until August when I went to the ER. A nine day course of Prednisone cured it overnight, but then it came back.

Here is my Prednisone taper schedule:

• August 8, 2023 started 15mg daily
• September 19, 2023 started 10mg daily
• October 20 start 9mg daily
• Nov 20 start 8mg daily
• Dec 20 start 7mg daily
• Jan 20 start 6mg daily
• February 20 started 5mg daily
• March 20 start 4mg daily
• April 30 started 3mg daily – Just after returning Indian Creek
• October 1 , 2024 decreased from 3 mg to 2 mg. Thigh cramps, knee collapsed hiking. May need to go up to 5mg?
• October 5, went back to 3. Knee, hips even finger cramps were bad
• October 12, 2024 went back up to 4mg, all symptoms went away
• December 16 went to 3.5mg/day. I’d forgot a morning dose until 4pm with no problems. Was starting to think I was healed.
• December 20, 2024 went to zero with no side effects, not even a headache. That’s after 15 months on Prednisone.
• January 4, 15 days without drugs. As mentioned above, my knee pain has returned, but it’s manageable. Hips and shoulders tweak now and then…but very short duration.

Here is an excerpt from an LA times article about this disease and how to beat it:

When the prednisone my doctor gave me almost miraculously vanquished the paralyzing joint pain I was suffering from, I was hooked.

At first, I didn’t care that I had to take a second drug (alendronate, brand name Fosamax), to slow or prevent osteoporosis, one of the dreaded side effects of prednisone. But I would learn there were other drawbacks.

Prednisone can wreak uncontrollable havoc on one’s central nervous system, leaving some users feeling like a zombie. It can also cause difficulty sleeping, problems focusing, decreased mental acuity, weight gain, lowered sex drive and, not surprisingly as a result of all the above, depression. “High doses for long periods of time can cause muscle weakness, drops in blood sugar levels, higher susceptibility to infection and even cataracts,” explained my Berkeley rheumatologist, Dr. Brian Kaye of the Sutter East Bay Medical Foundation, who was treating me for the autoimmune dysfunction polymyalgia rheumatica.

This is Monday, December 23, 2024. Last Friday I’d been on 3.5mg of Prednisone a day for a week, down from 4 a day since February. My sore joint symptoms were completely gone, unlike before (see below) when I’d try’d to taper down on the dose. The online forums about PMR are full of people warning of the dangers of tapering too fast.

They talk about tapering by a quarter of a milligram. Do they even make pills that small? Anyway, the side effects of Prednisone are serious and I was willing to gamble that I no longer needed the drug. Friday December 20 was my last dose as I quit cold turkey.

There have been zero withdrawal symptoms. On the plus side, I’m sleeping better…my dreams are full of color. The side effects are quickly fading. My joints feel normal for my age. The huge crash of prednisone withdrawal is a no show. I had read that the body makes 5mg of natural prednisone (cortisol) every day. But taking prednisone suppresses that natural production.

I was worried that my body couldn’t get up to speed after 15 months on that awful drug. But so far I seem fine.

My first attempt to taper off ten months in

I went below 4 during the summer, down to 3mg a day. Gradually my thighs started aching. But not regularly. Chris and I hiked up to Lookout Point and climbed Cloud Flare. I was strong and had no pain. But on the way down my right thigh was cramping. Halfway down I felt a stab of pain and collapsed into some boulders as it completely gave out. I very nearly broke my leg as I’d fallen into a sort of trap between large boulders.

Chris, 50 feet ahead, heard the commotion and offered to come up.

“You ok?”

“My knee just gave out”

“Oh no, shall I come up?”

“No, I’ll come down to you. It still works, it just hurts.”

Chris: Why don’t you give me the 70 meter rope? We’re going down hill.

Me: No, you already have the rack of hardware.

Chris: But you might fall again, and you’re going so slow, just give me the rope.

Me: I hate to make you do it, but something is wrong, I guess you’d better. This makes me feel really old. I hope my climbing days aren’t over. I knew it would happen some day.

The next time my knee went out it was the left knee. With the cramping pattern switching knees, I realized it was probably my Long Covid PMR disease. I bumped my Prednisone dose back up to 4mg a day and within a few days all my pain went away.

After a few months I noticed that I wasn’t cramping up in the mornings when I was 24 hours out from my last pill. One day I forgot my morning pills and was still pain free at 4PM. It appeared that the disease was slowly fading away. In August of 2023 my Reumatologist doctor had told me it could be as long as two years, and I was 5 months short of that. Eighteen months of joint aches, fifteen months on Prednisone.

A few weeks ago I cut my dose down to 3.5mg/day. After two weeks of that with no adverse symptoms, feeling great…other than Prednisone side effects…I decided to take a chance and quit cold turkey on December 20. If it blew up on me, I had a brand new refill of Prednisone to fall back on.

But here I am, seven days out feeling fine. I have some very minor stiffness in my knees, but I’m not sure it’s the disease. It might just be old age. And it goes away when I start moving. It might be early days. I can imagine a scenario where the disease is so used to being subdued by Prednisone that it is hiding, still scared of the big bad drug. But it will eventually peek out the door and realize all the guards have left and the palace is wide open and unprotected.

A brief diversion for the holidays

As I do every year since the grandkids were born, I spent 3 weeks practicing Christmas Carols for the family sing along Xmas eve. While the songs are fun to sing and I enjoy the process of mastering them, it feels silly to perform them once, and then be done for another year.

Normally I master a song and sing it for months or years. I need to reach out to Dave L. He was part of our Guitarbecue group while Fletch was in town. Last year he invited me to perform with his new group at the senior center where he plays every Thursday. That would give me more satisfaction than my one family sing along.

Back in the day my mom, dad and my sister would play for hours, maybe days during the holidays. Me and my cousin would sit on either side of our 99 year old grandma, who was mostly blind from cataracts. She would hold the sheet music and I’d sight read the music on my 30 year old chromatic harmonica. My cousin would sing in her lovely stage trained soprano voice. All the aunts, uncles and cousins sang. No one worried about perfect pitch to make an instagram moment. Those were beautiful decades.

In the absence of drawing, music and writing is my only creative outlet. What the hell is up with my art? It vanished again.

December 31, eleven days since I quit Prednisone cold turkey. I’m starting to get some stiff joints in my knees and ankles. Basically anywhere there has been injuries or past inflammation due to overuse or tendonitis is an easy target for the disease to re-establish some beachheads.

I haven’t been too active other than rolling some logs on Lisa’s new property and helping Clint on his 2 inch lift for his Tacoma. He put Bilstein 5160s on the front and rear, including the new leaf springs for a 2 inch lift. It took us two days, one for the front, and one for the rear. I didn’t do much other than sit around and advise on safety aspects. He doesn’t have much time with jack stands or floor jacks. Most guys trust their jack stands completely, but I like to back up everything. I put one foot cubes of wood beside the jack stands. We sat one end of the truck on those backed up jack stands then used my floor jack as needed to lift axles and lower control arms.

We had both watched videos, and I even made a pdf of screenshots with torque settings. But in the end we did a lot of head scratching and wild guesses: “Well, that didn’t work!” Our first front wheel took 5 hours. When we did the other side, in the dark, in the rain…it took 90 minutes. We couldn’t believe how much we’d improved. A couple key tools were a set of ratcheting box end wrenches, from 12 to 17mm, and a 3 foot crowbar. That was critical for aligning the leaf springs bolt holes. Those things are under tremendous pressure and don’t cooperate when you try to bend them. I gladly let him do all the wrenching. Occasionally I’d turn a nut, but it was his project and I was happy to be his assistant. There were numerous times where he really needed a second hand.

I played ping pong twice last week and was fine. Tomorrow might be harder with my stiffening knees. I’m fully expecting a month of suffering as my adrenaline gland emerges from Prednisone caused hibernation. They say it makes 5mg of cortisol a day naturally. Which is basically equal to 5 of P. But it hasn’t needed to in 15 months and they say it can take up to a month to get up to speed.

Sue and I had a great day today. I took ibuprofen before ping pong. She was playing strongly, jumping around like a teenager. A couple of times I was behind her and watched her line up on the ball and smash it down the table. She can’t believe how much better she has become lately. I reminded her that it’s all about practice. You will inevitably get better as you do it on the regular.

Later we came home and read books on the couch. She scratched my back while I massaged her foot. It was a pretty wild New Years eve.

It’s January 2, thirteen days off Prednisone. My achy joints have returned as expected. Getting up off the couch is painful. It seems better in the morning, and better when I exercise. I played well at Ping Pong today. We had 4 tables going, that is 16 people. I’m usually one of the top players there, everyone knows and respects my serves. But today there were two 30 year olds and they were in the Bob and Randy category. The one guy was maybe Randy’s equal. His serve was wicked! He could take my most devious serve or spinny return and slam it back with a wild top spin. He was treating my best work like high slow floaters. It’s super fun to play against hard guys because they bring out my best game. I still lose to their superior skill, but I go down with a smile.

Now it’s January 6 and my knees are the only thing missing Prednisone. They ache when I do deep knee bends and I get little random stabs of pain under the knee caps. It’s quite painful, I took Ibuprofen since I’m going climbing this morning. This disease is still around, but I will gladly tolerate some sore knees to be drug free.

This could have been so much worse. Be interesting to see how I am going forward.