Advice before I act

[marionofnorwich]

So, currently on 4mg and have been for a while now. Rheumie advises staying at that dose indefinitely as he is not convinced of my adrenal activity so I am not tempted to lower just now (though I feel confident that time will come) mainly because I currently have pain across my neck and shoulders and in my legs.

However, I am not clear whether they are PMR induced or another cause, given that I have had shoulder/neck/lower back pains pretty much all my life off and on and I also have osteo-arthritis in my right knee (though I think that the current issue is caused by an inflamed tendon or ligament).

So, do I problem solve by taking ibuprofen daily to see if it goes away or by upping my pred dose to 5mg for a few days to see what happens then? Lesser of two evils?

[SnazzyD]

What about doing the Ibuprofen flooding dose that PMRpro uses which should help reasonably quickly if it’s going to?

[marionofnorwich in reply to SnazzyD]

Yes i coyld3 try that. Is it 800 mg? Just once or more? I heard it previously but didnt embed it

[piglette]

The symptoms don’t sound like adrenals more like PMR. As SnazzyD says try a painkiller and see if it helps, if not I should increase your pred by 5mg for a week and see if that helps, then drop back to the last dose you were OK.

[PMRpro Ambassador]

Judging by the response of the pain clinic recently to my requiring ibuprofen for pain management - if pred works, then pred is preferable!! Never any complaint about my needing 15mg plus of that, 1x daily ibuprofen which works to keep me pretty much pain-free after a few days seems to be a no-no. So back to the drawing board for me.

[Sophiestree in reply to PMRpro]

that's odd isn't it. One ibuprofen I assume either with food or a stomach protector sounds an easier option to me.

So are you now back up to 15mg?

[PMRpro Ambassador in reply to Sophiestree]

No, no. Just comparing her fear of ibuprofen compared to pred, while most doctors are panicking about pred and trying to get patients to take NSAIDs instead!

[Sophiestree in reply to PMRpro]

Oh I thought you said back to the drawing board in terms of what you were taking now. Not with it at all at the moment. Have upped my dose but think I should have done it a week ago 🙄

[PMRpro Ambassador in reply to Sophiestree]

Yes - for the back pain!!!! I thought I had it sussed, she was fine about the first NSAID she gave me but it caused headaches, Not so fine about ibuprofen ...

[Sophiestree in reply to PMRpro]

It's so frustrating as when I do your flooding dose it works like a charm. But I do take Omeprazole beforehand (usually avoid it for anything else)

I get my back/hip confused though. I have just upped by 5mg for other original pain but the back is instantly better!

[Joanbill13 in reply to PMRpro]

interesting I take one ibuprofen if necessary for extra help!

[LemonZest11 in reply to PMRpro]

Since when do you take orders? 😉

[PMRpro Ambassador in reply to LemonZest11]

Occasionally I have guilt pangs - and I don't want to be thrown out!

[LemonZest11 in reply to PMRpro]

Fair enough then. 👌

[marionofnorwich]

I am also due to go to France for 5 days next week so may up my dose to 5mg anyway as a precaution. I am guessing that at 4-5mg I am not in danger of an adrenal crisis but don't want to add that to the list of worries either but will try a larger dose of Ibuprofen. Took 2x200mg about an hour ago but not made much difference. The most disturbing thing is this occasional 'swimmy' feeling - not as much as dizzy, just a bit weird

[PMRpro Ambassador in reply to marionofnorwich]

I don't think you can rule out the potential for an adrenal crisis at that dose - and in fact, they can happen even at much higher doses. The problem arises when you experience a severe stress event of any sort. Normally the body would respond with a spike of cortisol that can be 10 times the normal level and more. When you are on pred, that response may be blunted.

With ibuprofen it was designed to work on a starting flooding dose of 800mg which is what is required to occupy all the receptors and then you top it up if required if pain returns. Less simply doesn't work as effectively.

This occasional swimmy feeling does concern me - that would describe the experiences I had when I was having what turned out to be occasional bradycardic spells, they never lasted long but they were there. It turned out my heart was stopping beating for up to 7 seconds - all it did to me was cause a feeling of a wave breaking over me and since no-one ever caught one, it was dismissed. But when it happened once when I was standing, I fainted and hit my head. A set of circumstances meant I was on ECG monitoring because of an atrial fibrillation episode - and they caught the pauses. Please don't dismiss them or let them be dismissed.

[marionofnorwich in reply to PMRpro]

Ok. I did have (and maybe still have) what Max described as a brewit, a kind of whirlpool where my subclavian artery meets whichever other artery at the bottom of my neck at the front. There is a strong and visible pulse. He suspected GCA so i had an ultrasound (probably March 2023) but it didnt show any inflammation but maybe there is something else. I think i need a review with my GP as i havent seen anyone there since seeing Max this year

[marionofnorwich in reply to marionofnorwich]

Should i be carrying an emergency kit?

[PMRpro Ambassador in reply to marionofnorwich]

A bruit (French word) is the name given to a sound blood makes in blood vessels because of turbulent flow

ncbi.nlm.nih.gov/books/NBK289/

Difficult to say - but at least they looked.

As for an emergency kit - it sounds as if getting one out of endocrinology at the N&N is rather unlikely if Longtimer doesn't qualify!!!!

[marionofnorwich in reply to PMRpro]

No, you are right. Well I am not imagining anything too stressful unless the Eurostar crashes or something like that but will take spare pred just in case I need a boost

[Karenjaninaz]

My anesthetist pain management training recommends try taking an nsaid and acetaminophen together. Incidentally whether naproxen or ibuprofen works is genetically determined and varies from person to person. Try each.

[marionofnorwich in reply to Karenjaninaz]

Thank you. I don't know what acetaminophen is. I know that paracetamol doesnt really work for me (throughout my life) whereas aspirin has always been more effective though I tend to use ibuprofen. How does acetaminophen fit in please?

[Karenjaninaz in reply to marionofnorwich]

It’s the same as paracetamol; the maximum dose per day is 3 Gm in divided doses but mixed with an nsaid it’s more helpful. Will not work for PMR pain of course.

[PMRpro Ambassador in reply to marionofnorwich]

Paracetamol can improve the effect of ibuprofen when taken together. It does for me - paracetamol alone is useless.

[marionofnorwich]

OK so paracetamol and Ibuprofen together. I could try that. Thank you so much