Flare! What was the last dose that I felt good at?

[Chicama]

Good evening/ good morning all!

After I was diagnosed with PMR on 6/16/22, I was given generous and kind advice from the knowledge and experiences of PMRpro, Dorset Lady as well as many others. Well, I’ve hit a bump in the road and before I talk to the rheumatologist I want to gather intelligence from you folks!

All was well until 1/29/23 when an ultrasound of my parathyroids found cancer on both sides of my thyroid! I had a thyroidectomy and parathyroidectomy of two glands on 3/2/24. They found papillary cancer, tall cell variant. The cancer doctor says I’ll live to be 90… BTW the cancer was found by accident, as was the osteoporosis… all because I started taking prednisone for PMR. Weird but true!

After the procedure, my body was stressed by the switch from a working thyroid to a 125 mcg levothyroxine pill. I’m mildly hypothyroid and the cancer doc says the symptoms I’ve been experiencing “are not in her wheel house.” I had increasingly achy (arms/shoulders) which I initially put it off to the dosing level of Levothyroxine. However, the last couple of nights I began to have trouble turning over in bed, my legs were achy and tight like sausages AND I have a tough time pushing myself out of bed with my arms! I tried Theracurcumin at a very high dose for three days and it didn’t help! I was trying to drop 1/2mg prednisone beginning last week, across 8 weeks, and am now stopped.

My HS-CRP & SED RATE are SOARING (whilst on 10 mg prednisone).

High sensitivity CRP

4/14/23 56.2

11/30/22 7.3

9/13/22 10.0

8/16/22 15**

**Rheumatologist switched from CRP to HS CRP. I’d been on 45 days of 30 mg prednisone at this point.

Sed rate

4/14/23 62

11/30/22 16

9/13/22 31

8/16/22 12

7/2/22 33

6/16/22 117**

**Diagnosed with PMR

After the last two nights I recognize that PMR dragon has been aroused by the thyroidectomy, et. al. No doctor (surgeon, oncologist, rheumatologist, or endocrinologist – I’ve acquired a slew after 70 years of none!) has stepped forward to say I have an infection after the above 4/14/23 labs were published.

I know the instructions for a flare (up 5 mg for 7-14 days and back down to the last dose at which I was last comfortable).

My quandary: I don’t know that 10 mg was enough to cover the disease activity even though I stayed on it for 90+ days before, during and after the procedure Perhaps I was experiencing PMR symptoms after the thyroidectomy that I wrote off to the levothyroxine dose?

Do I go up to 17.5 and drop back to 12.5, or go up to 15 and drop back to 10 mg? Which has the best option for snuffing out this flare? Any other thoughts are welcome.

As you all know, this is quite a journey. My black sense of humor is holding me together. I hope that everyone on this forum feels cared for and not alone. Sending you all love and light, Chicama

[DorsetLady PMRGCAuk volunteer]

I think if it were me, and I wasn’t sure, I’d go for the 17.5mg - and then drop back to 12.5mg.

You’ve been through a lot recently, so probably need all the help you can get…. Once you get back to 12.5mg you can then review the situation- as the song goes!]

Humour - whatever colour, gets us through a lot😊..good luck

[Chicama in reply to DorsetLady]

Thank you for your quick response. You are so generous with your knowledge. I slept better after reading your thoughts.

Last night I took my first dose at 17.5 and will stay here for 14 days. Fingers crossed that it will do the trick. I’ll lie low in the meantime!

[PMRpro Ambassador]

What a silly expression! "Not within one's area of expertise or interest; against, outside of, or not matching someone's general interests, abilities, or area of familiarity; outside of someone's comfort zone." So why not just say that? Or do you think it sounds as of it suggests you don't know something you should ... Now I have that off my chest!!!!!!

It is all very well switching from CRP (a measure of inflammation) to hs-CRP - a measure used to look at cardiac risk but the hs-CRP is only valid in a patient with a normal range CRP, NOT for someone with a raised CRP due to inflammation. Someone else is out of their comfort zone!

Anyway - I think you need to be at a dose of pred that controls your symptoms and it isn't possible to say that the dose you were on before the op is enough now since the disease activity has obviously been raised and you don't know by how much or how long it will last. I fear you may have to start again. If 15mg is enough to feel a lot better that will be great - but it may not be and I honestly don't think you can rely on being able to drop back to 10mg.

[Chicama in reply to PMRpro]

I actually chose “wheel house” as an alternative to what she said. Her choice of words was rather raw and IMHO better not repeated. What I’ve discovered in my thyroid cancer journey is that many doctors and staff don’t handle people who ask questions too well. I’m old enough to know what’s going on but it still throws me. I’m not looking for a friend but I am looking to maximize the knowledge of my expert! Yes, alas many of my experts are out of their comfort zone with me.

Figuring out that I was flaring took a while…hypothyroidism symptoms cross over with the umbrella of PMR symptoms as do hyperparathyroid symptoms! I felt great two mornings after the thyroidectomy/ parathyroidectomy because I was no longer stiff and stopped needing to pee all the time. Oh, joy!!! Then it was a slow progression recovering from the operation and until they get levothyroxine levels improved, I’m hypothyroid. My moment of enlightenment came when I had a challenge rolling over in bed and my inflammation markers soared. My doctors and their staff are so siloed they really don’t see the connections although my surgeon who does 300 thyroid and parathyroid procedures did.

I’m not messing around and will go directly to 17.5 and drop to 12.5. It’s best to snuff out the inflammation ASAP.

Thanks for your thoughts. Particularly about “wheel house” and comfort zone. We got rain last night the garden needed!

[PMRpro Ambassador in reply to Chicama]

I had one of those experiences on Friday - definitely not comfortable with me I felt!!!!

I just got back from a walk (and prosecco) as the rain arrived, Very well times I felt. And boy - do we need rain!!

[Body_bonkers]

Suspect your PMR was out of control. Thyroid can cause aches/pains but not weakness like that in my experience. Don’t sweat the numbers - increase steroids until you feel better because the inflammation just builds up, You’ve been through the mill - look after yourself and best wishes for recovery

[Chicama in reply to Body_bonkers]

Thanks Body_bonkers! Sorting symtpoms is becoming MY expertise! Enjoy today and take care.

[Blossom20]

I can't offer you any advice, but I feel for you and wish you all the best.

[Chicama in reply to Blossom20]

Blossom20... I'll take the compassion and best wishes... same back to you!!

[herdysheep]

Someone on another forum a while ago, said 'hit it hard'. I have sometimes dithered before I did that and regretted it. If you can get the inflammation under control, it will be good to feel as if you have some control!

[Chicama]

Thank you herdysheep for sharing your hard earned wisdom! As you can see above I'm wacking the inflammation. I went to your previous posts and bio... And yes, it is wonderful that people are generous with their support and kindnesses on this forum. Hope you are feeling better after your recent flare! It's sunny here -- 3 hour days of sunlight. I'm soaking it in. Enjoy today.