Significant 2nd meeting with my Doctor – How do I suss her out? What do I ask?

[Chicama]

Hello All,

Hope you are enjoying whatever makes you happy. Thanks to you, I am well psychologically because I know you are here and willing to share your thoughts with me.

I see my GP on Tuesday morning (the second time f-2-f after diagnosis on 6/16/22). I want to run by you seemingly unrelated issues… but bear with me.

I. IMPACT OF MOVING TO SINGLE DOSE AT 2AM

Today is Day 31 of prednisone and Day 23 (3+ weeks) of 30 mg dose. Initially I split the 30 mg dose into 15mg/8am and 15 mg/8pm and had few symptoms mostly nits and gnats but HORRIBLE insomnia. On Thursday,7/20 (with your help) I switched to a single 30 mg dose at 2am and woke up with few symptoms (I’d already taken a split 30 mg dose in the previous 24 hours so I had more prednisone on-board than usual).

During the next two days with the 2am single dose I've had increasing stiffness at the end of the day and when I get up in the morning and beyond. I’m lifting my feet out of deep sucking mud and my gait is unbalanced as I start to walk but improves when I gain momentum. HOWEVER last night was the first night that I slept since PMR arrived… not a perfect sleep but when I woke up in the middle of the night, I was able to fall back asleep. I feel rested. It’s early days on this so I need to see if this trend continues. I am thrilled.

Question: Why is the stiffness back? Am I tapping into the infamous big bucket of inflammation that gathered when PMR was activated? Split doses covered that up better. If my guess is correct, do I insist on two more weeks at 30 mg before beginning to taper? What do you think is causing this?

II. QUESTIONS TO ASK MY GP

You’ve already answered questions about what tapering should look like from there BUT what else do I ask? Yes, a Dexscan… but HOW DO I SUSS HER OUT?

I know she wants to know if the stiffness is bothersome. Geez… bothersome??? Compared to stiffness with NO prednisone when you can’t move without someone maneuvering your body out of bed and hauling you up and down from the toilet and you can barely lift your feet walking… What I’m experiencing with a single dose at 2am is nothing. But I know from my work as a nursing assistant that I have an unsteady, unbalanced gait as I start to walk until I gain momentum. Today it started last night at 11pm and is still impacting me at 9am. This looks like a pattern is developing. When I begin to move, I’m lifting each foot out of mud. This goes back to the above question. Why is stiffness appearing again?

Thank you, as always.

Sending everyone good energy,

Dana

[PMRpro Ambassador]

Very simple: the antiinflammatory effect of the pred isn't lasting the full 24 hours for you , it can be anything from 12-36 hours, depends on the person, You could try 2/3 of the dose at 2am and the rest sufficiently late to extend the effect for 24 hours. Even lunchtime might be late enough, still give you a fair time for the pred to be out of your system before bed,

The 30mg hasn't yet cleared out all of accumulated inflammation - I didn't need that much but it took 3 or 4 months for some of the inflammation in the hips to go entirely. So the probably relatively small increase in effect at the end of the 24 hours is still enough to make you uncomfortable. And I have to ask - did you do more because you felt better?

[Chicama in reply to PMRpro]

Yes. I got my haircut yesterday and walked more to do that... D***

[Chicama in reply to Chicama]

My hair looks wonderful!!! But was it worth it?

[PMRpro Ambassador in reply to Chicama]

It'll settle down again!

[Chicama]

Wow... a haircut isn't much activity. PMR seems to have a 'quid pro quo' nature. NOW that I've experienced this revenge, I better understand what everyone is talking about. I've been so disciplined up until the haircut. I presume my activity level at some amorphous point in the future will be able to go up because my inflammation will go down.

[cycli in reply to Chicama]

yes. PMRpro is right again. I split 1-2am 2/3rds and lunch time 1/3rd. It works but makes reduction slightly more complicated. Took 3-4months for my inflammation to go down. Stay at 20 and 10 until you begin to see the benefit and don't take any nonsense from GP. They need to understand.

[Chicama]

Thank you, Cycli for responding. With your support, PMRpro and everyone else kind enough give their thoughts... I steer my ship and avoid the shoals of PMR ignorance 🤞🤞. Most of all for myself, and second with my physician. This is a huge learning curve.How do you know it took 3-4 months for your inflammation to go down? Sed rate and C-reactive protein scores?

[PMRpro Ambassador in reply to Chicama]

Usually the most reliable indicator is whether you can reduce the dose without a return of symptoms! Blood markers don't tell the whole story by any means but doctors tend to like numbers!

[Chicama in reply to PMRpro]

My doctor 'says' she follows symptoms not numbers during treatment. 🤞

Oh, geez...that said, I realize NOW that although I thought I was disciplined activity-wise that I may not have been. Do I lay low for a week at 30mg. and let this dust cloud of inflammation (mostly stiffness) settle before attempting to taper? If a haircut set me back, I can only imagine what a visit to my doctor in Philadelphia at 7:15am will do. Anyway, another week would mean four weeks at 30mg.

Last question: When I taper, you suggested stepping down by 2.5 mg... and WAIT FOR HOW LONG (a week? 10 days?) to be sure I'm getting "the same symptom-relief as I got at the 30 mg dose " before going to the next drop? And do this until I get to 15 mg?

As you can tell, I'm very wary of being in PMR pain again. I'm a wimp compared to others here who are in awful continual or intermittent pain yet have a sense of humor and are so supportive of others. Thank you for your thoughts.

[PMRpro Ambassador in reply to Chicama]

I think most of us would say AT LEAST 3 weeks with 2.5mg drops. Stiffness can also be due to steroid withdrawal - even just the change in the dose. There will be doctors who will claim you haven't been on pred long enough or the changes in doses aren't big enough to cause trouble - but we have seen thousands of patients pass through these portals and we know that some people are incredibly intolerant of changes in dose.

Have you ploughed through the FAQs? They really will help you understand this illness a bit better. But don't just read them - there are some you need to act on too!!

[Chicama in reply to PMRpro]

Got the drops. Sorry to sound gobsmacked but is there anything I need to act on now in FAQs? 😵

I've read: fatigue, pacing, diet, exercise, tapering, flares, timing of pred doses, adrenal re-start/fatigue, prednisone side effects, PMR symptoms, GCA, advice for new patients, etc.

But it seems that until I experience something... like the pacing, I don't get it. I KNEW I could kickup inflammation, yet I was totally surprised that a haircut dumped me into the stiffness swamp. Yep, it's a learning! Some of it just doesn't make full sense yet... like the pain... only in hindsight do I see what I tolerated and how it disabled me. Good grief! I'm beginner at PMR and I hate being a beginner. I seem to learn best by making mistakes. And I thank you for helping ameliorate the ones I make or avoid them. This is a humbling experience.

[PMRpro Ambassador in reply to Chicama]

DIet can be very significant - since carbs are very proinflammatory in some people. There may be other things that affect you - but YOU have to work it out as everyone is different. I think fatigue and pacing is also something individual but like diet it is very easy to do more than you think you are - for example many people THINK they are low carb but when they write it down - they weren't. Plus, different foods spike BS in different people. For some people tomatoes cause massive spikes -in others, not at all. That may be why some people say nightshade veggies are pro-inflammaotry - they make not the slightest difference to me. And what for me was a normal day might still be far too much for someone else

[Chicama in reply to PMRpro]

I'm testing my blood sugar every morning. I will start to see what's happening two hours after meals. I've lost 20+ lbs/ 1+ stone since the start of PMR. I will mention it to the doctor. I am eating much more than my sister -- at the moment she's the Chef!

As far as pacing, I will start on Wednesday (after my Philly trip) and begin to lay low until I find the sweet spot of little to no stiffness. Then begin to increase slowly until I hit a bump. Thank you, as always.

[cycli in reply to PMRpro]

totally agree, however in my case the bloods are very reliable indicators.

[cycli in reply to Chicama]

Yes they levelled out but my dose was only just sufficient so it took longer. A larger initial dose would have cleared it sooner but being new to it I didn't want anything more than 40. My mistake. Still being new to it the rheumy I was assigned wanted a fast reduction and I flared again later. Now with more knowledge I am trying again. It's different and also the same for all here.

[Chicama]

I remember you saying this... and of course, I 'sort of' understood intellectually but until I take the example in and see me as the patient is didn't hit home. "Different but also the same for all here"... I'm hoping that I will begin to see the parallels. Of course, the most important thing is that we reach out to each other. Loneliness and pain thrive in a vacuum.

[AncientMariner]

You have my sympathy, navigating this unforgiving condition is not helped by the inconsistencies you will invariably face when consulting the clinicians. The longer you go on the more you will become aware of this but if anything (as they are increasingly becoming aware of in cancer treatment) it will help you tailor your treatment plan to the genetic variables of the person you are. Keep a diary, it will give you reference points👍

[Chicama in reply to AncientMariner]

So nice to meet you. Thank you for weighing in with your kind thoughts. I'm beginning to drop the mental construct of 'healthy me with endless energy' to spray everywhere! It felt so good. Obviously, a personality type that led me down the garden path to this beast of a condition.

My sister (happily for me we live together) pushed the diary too. I am keeping one, today is Day 34 of prednisone! I find that as I understand my body and all the various inputs (prednisone, stress, food, sleep, fatigue, pain, etc.) my insights change. Without the support of the people on this site, I would have to rely on my doctor ALONE. Big responsibility for her and a co-dependent relationship for me. I do not like to be told what to do. A two-way conversation about options is my go-to. It sounds like many doctors have rigid 'do it my way or the highway' attitude. Burnout? Because I have the minds (and FAQs) on this site to bounce ideas off I am in a good spot. But still leery of the power a doctor can wield over me if I allow it.

I would like to believe that pharma will invest in research for PMR/GCA but believe that there is not enough profit to motivate them. Cynical, yes. I will move to your position and hope they back into it through another avenue... as you suggested, perhaps cancer. Be well and take care of yourself.

[PMRpro Ambassador in reply to Chicama]

They are looking at PMR - honest! But it will be a biologic attempt and that has the same downsides as Actemra, PRICE! If one company has a go, maybe others will too. But we are left with the cost conundrum ...

[AncientMariner in reply to Chicama]

Actemra is something I trust but tough to get and time limited, at least here in the UK. Keep going Chicama, I mean what's the alternative?

[Chicama]

Really!!!! I stand corrected. Maybe Medicare will pick up the drug and okay it for use. They did it with Adulhelm for Alzheimer's... very expensive and apparently not effective.

[PMRpro Ambassador in reply to Chicama]

Not been through clinical trials yet, just designing them - don't hold your breath!

[Grammy80]

I just simply wanted to say that I'm glad you're here... it is a wonderful place to be surrounding each of us with knowledge and great support! Everybody walks the walk together.💕

[Chicama in reply to Grammy80]

Glad to meet you Grammy80... I'm so glad to be here! And feel blessed to have found the site. I'm blown away by the generosity, supportiveness and senses of humor. 🥰

[Grammy80]

Everything you said is true and these wonderful people remind us all...the road may be long but a sense of humor (humour) is essential in your 'tool kit'.😊💕