PMR & Stage II Polycystic Kidneys

[Eleanor0123]

PCP determined PMR based on my “tinman stiffness” and bloodwork showing crazy inflammation levels in late January, and started me on 20 mg of prednisone. An ultrasound and xray turned up polycystic kidneys with a too-large to pass stones. I’ve tapered to 15 mg of prednisone at this point, and am wondering if it was too fast or if it’s Sjogren’s or something similar — very fatigued after doing normal household things/walks/standing/shopping, with severe discomfort/weakness/stiffness feeling in the lower back/hips/glutes, above the knees, and up the spine into the triceps — very localized, very stiff. I have reduced sodium due to the kidney issues, and my BP is well-managed. I’m 66, and eat a lower protein predominately plant-based non-processed diet.

What am I doing wrong? I have an appointment with a new rheumy Monday, but everyone here seems far more knowledgable with actual experience with the condition.

Any thoughts would be greatly appreciated, this entire thing is rather daunting.

[SheffieldJane]

Dryness characterises Sjorgrens, eyes, mouth, mucous membranes. Poor you, you are dealing with a lot. I hope your new Rheumatologist is really good. I think you are managing things pretty well. Maybe you are trying hard to do what you used to and it’s too much. A hospital appointment tomorrow for a capsule endoscopy will knock me out for hours.

[Eleanor0123 in reply to SheffieldJane]

I started waking up with a mouth so dry it’s very hard to swallow… but I had chalked that up to the prednisone. This is a new rheumy, and I am told he is very sharp and enjoys a good puzzle. It’s amazing to me how debilitating this has become, quite frustrating when just a year ago I was still quite active with weekly racquet sports and reformer Pilates. : (

Thank you for your insight, we will prevail. Onward!

[SheffieldJane in reply to Eleanor0123]

Try not to compare with anything other than your own progress. It’s too disheartening.

[Eleanor0123 in reply to SheffieldJane]

👍

[SnazzyD]

Yes, it can be disheartening to look back, especially in the early days but as SJ says, it can really makes things feel worse.

May I ask, did you ever get relief from your symptoms and how long were you on 20mg for before you reduced?

[Eleanor0123 in reply to SnazzyD]

At 20, yes. 1st rheumy had me go to17.5 after six weeks, then to 15 after the second six. I’m staying at 15 now and see a new rheumy next week.

[PMRpro Ambassador]

"eat a lower protein predominately plant-based non-processed diet."

I do appreciate that will be for the kidney issue but it is generally the case that MORE protein is helpful for PMR-ravaged muscles since pred affects protein metabolism. Is there any way of balancing that?

Did you drop directly from 20 to 15mg? Over what sort of time period? You need to be at the starting dose for a few weeks and tapering the dose is best done not more than 10% at a time although 20/17.5/15 usually is tolerable for most.

I think it may well be you haven't adjusted your lifestyle enough - you can't take pred and jump back to your previous level of activity immediately. You need to pace and rest and adapt what you do to be most comfortable. Try reading the links given in this post:

healthunlocked.com/pmrgcauk......

I now find the amount I do in a day is being reflected in stiffness the same day - the further I walk, the stiffer I am after sitting for a while later in the day. I don't remember it being like this before but thanks to Actemra I am at a lower dose of pred now than I have been in years so I do wonder if it is that.

When it comes to activity, it is a good idea to build up the amount you do slowly to establish what you can manage without payback next day - if you overdo things you can develop DOMS (Delayed Onset Muscle Soreness) that is more severe than you are used to and takes longer to resolve since the muscles don;t heal as well or quickly.

[Eleanor0123 in reply to PMRpro]

Basically 20 to 15 over 12 weeks. I’m seeing a new rheumy next week. I’m getting adequate protein via tofu, whole grains, salmon and such, but did learn the hard way that shrimp and it’s purines (uric acid increase) put me in the recliner for three days, lol!

Thank you for the info, good to know. : )

[PMRpro Ambassador in reply to Eleanor0123]

But you are saying that you had good relief at 20 but not at 17.5mg? Is the 1st rheumy SURE of his PMR diagnosis?

[Eleanor0123 in reply to PMRpro]

That’s why I’m seeing a new one next week. ; )

[Amkoffee]

I take Cevimeline for dry mouth but there is another drug for the same condition. I can't remember the name of it. I will also use something called Xyla melts. It's over the counter medication available in the US. I don't know if it's available where you live but it's worth looking into. It works quite well at night when you're sleeping.

[Eleanor0123 in reply to Amkoffee]

I will look for it, thank you!