Restart on Prednisone in prep for Camino-Update

[SMH4CRNA]

Disclaimer: please refer to my previous post on this topic for background.

I felt I should initiate a new post to provide a status update. I have become accustomed to want to reach out for support since I truly believe you all understand where others do not in regards to living with PMR.

In short, I restarted prednisone after a 6 months break. I have tried to take walks in preparation for my upcoming trip to walk the Camino without prednisone. As short as 3 miles in I feel stiff, swollen and pain. To follow, it takes a day of recovery to attempt again. My ankle and hand swelled this past week after only walking 3 days. So, back on prednisone I go.

Started on 10mg last Friday. I continue on 10mg today. I have walked 3 days this week thus far without issue. Today, I walked over 6 miles (>10k) without significant issues. The goal is to finish the week on 10mg. May drop to 5mg on Friday. Reminder, I have only been on Prednisone less than a week. So, with alignment with my doctor we agreed to this taper regime. Will increase as needed.

The issue I am having is where I am going to be following the Camino. In the past two years I have spent as much time on prednisone as I have been off. The fact is, I feel the PMR symptoms when not on prednisone. At higher doses >5mg I feel the side effects. I am in a state "damn if you do, damn if you don't". As I spoken of before, I do not have the doctor's backing for being on prednisone since they believe I do not have it. Naturally, I beg to differ. My next appointment with my new Rheumy is scheduled for July. Most likely I will remain on prednisone until than. We will see.

Thank you for your support and guidance.

Update:

Reduced to 5mg from 10mg 6 days ago. So far so good. Still no PMR symptoms. Minimal Prednisone side effects since I started couple weeks ago. Goal is to stay at 5mg until my rheumatology appointment in July. Truly a blessing to not have the discomfort rule my life.

At 5mg, am I still have adrenal activity? Hate to feel those side effects of the adrenals waking up after a prolonged Prednisone regime. Did not enjoy that at all.

[piglette]

I must admit, I don’t think I would try walking the Camino if I had any niggles, mind you I would think twice about doing it without the niggles, but you are probably tougher than I am.

[PMRpro Ambassador]

What your label is is immaterial - you have a pred-responsive myalgia. The aim should be to have you feeling well, able to function and a decent QOL - and if they are scared of pred, then they must identify another option. It is unreasonable to leave you suffering when they do actually have a means of managing your symptoms. The fact that pred works does suggest it is inflammatory whatever blood tests suggest.

[SMH4CRNA in reply to PMRpro]

Can I have you as my doctor?

Yes, it does not matter what it is officially, but prednisone has proven to work whereas other medications have not to include NSAIDS. Yes, they need to abide to the oath "to do no harm". In my case, my labs do reflect an inflammatory condition.

The issues is when they evaluate me it is mid-day. I'm always functional during the day, but they never see me the other 12 hours of the day.

Thank you for your understanding.

[PMRpro Ambassador in reply to SMH4CRNA]

Been there, done that, got the t-shirt. But I am lucky and have doctors for whom QOL is the primary consideration.

[LemonZest11]

I have walked the Camino and yes, it can be a challenge but that's the idea, right? I think you have your answer ... take the pred! Buon Camino!

[Karenjaninaz]

S, remember prednisone causes muscle atrophy. As a matter of fact, I found an abstract in the Journal “Chest” that the short term heavy doses, used for pulmonary issues, caused pulmonary muscle weakness. The last thing wanted in those cases. Tapering prednisone, in those cases, resulted in muscle strength improvement.

Maybe using the lowest prednisone dose to be reasonably comfortable on the walk?

OTOH maybe pred is the only way you can tolerate the stress of the walk.

[SMH4CRNA in reply to Karenjaninaz]

Yes, and yes. Lowest dose and enough to allow me to have a quality of life.

[LWNE]

Hello! In May 2019 I walked the last 100k of the Camino while on 10mg of pred (had tapered gradually from initial dose of 15mg 10 mths earlier)...I had no problems at all, but I am a very fit and regular hiker, and I think that helped...I am now on 4mg, I had got down to 2mg a few months ago, but then had a flare up of uveitis, my other condition, lucky me, and had to go right back up to 40mg for a few days before tapering again. I think my PMR is probably in remission, but the uveitis is more unpredictable! Good luck with your Camino adventure, it was one of the best things I have ever done.

[SMH4CRNA in reply to LWNE]

Thank you for your reply. This is very encouraging. I will drop to 5mg this weekend since this is the dose that worked for me prior to coming off the last time. When I dropped below 4mg I felt all the symptoms return. It just feels so good to be pain (relative term) free. Perhaps it is the prednisone honeymoon, but I will enjoy while it lasts.

[gingerraspiller]

I was diagnosed with PMR in midAugust 2022 and started at 40 mg prednisone. I was scheduled to hike the Portuguese Camino (2-week hike) starting Sept 20, 2023. I started on 40 mg of prednisone - symptoms reduced by 95% in 48 hours. Doctor said no reason I could not go. I was at 20 mg when we flew to Portugal - I stayed at 20 mg for the trip. I did okay! Good luck

[HeronNS in reply to gingerraspiller]

You did the Camino in 2022, I think? Having recently been diagnosed with PMR and on a significant dose of pred? You did very well. I bet it was a wonderful experience.