Tapering and lab results - do the stars always al... - PMRGCAuk

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Tapering and lab results - do the stars always align?

Nitrobunny
Nitrobunny

Responding to another post earlier I mentioned I’m down to 5 (ready to go lower as it’s been a month with no issues) and my lab results from this week showed my ESR at 24 and CRP 2.4 (CRP half of what it was 3 months ago). I’ve noticed that many people who are taking similar amounts of prednisone have “normal” labs results. I was wondering how often this is the case. My rheumatologist who is just a love, does not believe in relentlessly driving his patients achieve Club Zero. He has told me more than once he’d be happy if I find I have to stay at 5 or 3 or whatever dose I can feel comfortable at and that the inflammation markers may or may not ever be “normal”. I really like his realistic approach. The only time I ever achieved normal inflammation markers was when I was on Actemra. They were 0 and I loved seeing that. Today all my other labs CBC, AST, ALT, and creatine are well within normal range. I don’t feel “perfect” and I don’t ever expect to but by the time I’ve finished a morning cup of coffee or tea, the morning stiffness has subsided and I’m off and running (not exactly running) for the day.

The photo is of course completely nonrelated. Samson lives to steal “my spot” on the corner group and likes to use my lap desk as a head rest. It matters not to him that he may get drool on my MacBook Pro. But he’s my Zen Doggie and I adore him.

13 Replies
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Gotta love that expression on Samson! You certainly have your share of immune illness Nitrobunny. Always good to have a helpful Rhummy who listens. ATB

He’s quite the character. I’m happy to been in a good place right now. I was so sick over Christmas and in the hospital for over a week but lately everything seems to be going well. No pancreatitis or severe flares for quite a while now.

Gorgeous pic!!!!!!!!!!!!!!

Nitrobunny
Nitrobunny in reply to karools16

Thank you! He enjoys having his photo taken and my husband complains that I have more pictures of Samson on my phone than I do of him.

Good news and beautiful doggie!

Thank you so much!

Nitrobunny,

I am at 6mg of Prednisone and my Rheumy said the same thing. She said try to get to the MED (minimum effective dose) and stay there, "there is no rush". I also think my Rheumy is great and listens to her patients. I am still taking Actemra, one shot every two weeks, and so far no problems.

That’s wonderful! Sounds like you have a gem of a rheumatologist too. I had to quit the Actemra after having a very bad reaction but it sure allowed me to make a big jump down on the prednisone over a pretty quick period of time. I’m grateful for being able to take it for the time I did.

Best~

PMRpro
PMRproAmbassador in reply to Nitrobunny

When you stopped the Actemra was the lower dose of pred still enough?

Nitrobunny
Nitrobunny in reply to PMRpro

Yes, at the time I was down to 40 and fortunately that was enough to keep the GCA headaches and jaw pain away along with keeping the PMR in check.

Glad you’re feeling well and like your Rheumatlogist. I’m tapering from 6 to 5 after one year. Seeing my Dr. today. She’ll be pushing me to get to zero! I shake my head and do what I want!

I love Samson. My dog, Joey is not long for this world...13, blind, bad arthritis, deaf. Still eats and cuddles.

Nitrobunny
Nitrobunny in reply to Sandy1947

Good for you for doing what you want! After all you know your body better than anyone else. Occasionally I have to raise my dose to head off a flare but it’s getting easier and easier to go right back to the lower dose.

I’m so sorry to hear about Joey. I lost my one in a million Saint Bernard to cancer last year and was not looking when we came across Samson last October and rescued him.

Best to you and Joey - wishing you lots and lots of cuddle time together ❤️

Thanks!

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