It’s not a flare it’s the journey

[SpaghettiWestern99]

Having being diagnosed with PMR in Aug-23 I’ve been slowly tapering to 4.5mg.

Over the last 6 weeks I’ve noticed a tiredness creeping in and a few aches and pains coming back. I went to see my brilliant doctor for our regular 6 weekly check up and she’s confirmed my ESR has risen a little since my last tests many months ago.

As nothing else has changed we’ve agreed to increase the Pred to 5.5mg and take it from there.

On first inspection it feels like a failure, but the doctor reminds me this is all normal for PMR patients and that your journey will never be linear but you will get better.

This morning I’ve reflected on how far I’ve come and it’s not the level of Pred that matters, it’s the right level for the you and the quality of life you need.

So it’s not a flare it’s just the nice gift that PMR and Pred gives you on the journey to recovery!

Happy weekend I’m off to the gym!

[Rugger]

I've been on that journey too, for the last 8 years, but still hoping to reach the destination.

Happy travelling!

[grannyouch in reply to Rugger]

I'm similar to you. 7 years I think and I got down to 3.5 but felt so unwell and exhausted and got the worst IBS symptoms ever. So I've upped my dose to 5 which may be still a little too low but feeling better. Though I still have g.i. Symptoms. Good luck on your journey!

[Rugger in reply to grannyouch]

Thank you and the same to you. I'm trying 4mg at the moment. 🤞

PMR: 2016

GCA-LVV: 2019

[tangocharlie in reply to Rugger]

That's mde me smile Rugger, I definitely caught the slow boat to China instead of the Express bus but still have hope that we will reach the promised land one day. And meanwhile while we're in that boat we can throw lifejackets out to others when they're adrift. How many metaphors can we squeeze in here? Don't mention sinking ships though

[DorsetLady PMRGCAuk volunteer]

Would say a combination of adrenals stuttering and may too low a dose - so slowly slowly is the way to go.. and definitely not a failure.

[tangocharlie in reply to DorsetLady]

Heateneing that the doctor agrees with us though isn't it, the times they are a changing

[PMRpro Ambassador]

How can it be considered a failure? There is nothing YOU can do to influence the course of the autoimmune part of PMR and you have actually completed the first part of the journey very neatly. You are never reducing relentlessly to zero, you are titrating the dose of pred to identify the right lowest effective dose for you at this point. It doesn't mean you won't get lower, just not yet.

Did you do chemistry at school? Did you learn to do titrations?

"Titration is the slow addition of one solution of a known concentration (called a titrant) to a known volume of another solution of unknown concentration until the reaction reaches neutralization, which is often indicated by a color change. The solution called the titrant must satisfy the necessary requirements to be a primary or secondary standard. In a broad sense, titration is a technique to determine the concentration of an unknown solution."

You add the known (the pred) to the unknown (PMR) until you find the right amount. It is a common technique in pharmaceutical use but usually you start with a low dose and work up but that doesn't work too well with PMR so you start high with too much drug and gradually lower it until the symptoms resurface. That dose is too low - so you go back up to the previous good dose - why it is preferable to use small steps so you aren't going back to a much too high dose.

And the fatigue - a little bit of inflammation escaping and a little bit of reluctant adrenals!

[SpaghettiWestern99 in reply to PMRpro]

Thanks PMRpro ,

I’ve got a degree in Biology and totally get the approach.

I keep a diary and recognise when changes are afoot. This is the first time when I’ve had to go upwards. It’s fine, but like all of us we’d prefer not to feel rubbish 😀

[PMRpro Ambassador in reply to SpaghettiWestern99]

Well quite! QOL is all ...

Not knowing people's backgrounds I never quite know what level to pitch at. Lots of people would probably respond "What's chemistry?"

[SpaghettiWestern99 in reply to PMRpro]

Your support and advice continues to be invaluable.

Thank you!

[Positive__ in reply to PMRpro]

PMRPro, Loved your explanation. Greatly helped my understanding of the whole steroid tapering aims. Thank you! 🙂

[Janet57 in reply to PMRpro]

Enjoyed the chemistry lesson PMRpro - at school the choice was either science or secretarial studies and I chose the latter, which served me well but I’ve learned so much more and appreciate so much more since then.

[PMRpro Ambassador in reply to Janet57]

I look at people who do the secretarial stuff and wonder!!! I couldn't do it to save myself!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

We all have different strengths - makes the world go round… 😊

[proactive]

I was diagnosed in early. Sept 2023 and have only managed to get down to 8.5 mg after two flares when trying to reduce to 8 mg, so from my perspective you are doing great!

[PMRpro Ambassador in reply to proactive]

But YOU are actually doing well from September to June which is only 8 months.

[Tiggy70]

You’ve done very well to get so low in less than a year. I’m almost 4 years in and haven’t got below 8.5 yet without flaring. It’s not from lack of trying but life has a way of throwing curved balls at you, eg surgeries, Covid etc.

I love your positive attitude. Here’s hoping your journey continues to be a smooth one 🌸

[tangocharlie]

No two journeys are the same, we are all in the PMR storm but not in the same boat. Your progress sounds promising to me, don't blow it now. PS your post has prompted some wonderful replies which I have learned from so thanks

[SpaghettiWestern99 in reply to tangocharlie]

That’s a great thing about the forum there is something for us all!