PMR again ?

[Retallack]

I stopped pred on 8th October after 4 years and was OK until now. I have developed stiffness and aching in hips down to knees and am wondering whether the PMR has come again due to stress. I was diagnosed with breast cancer on 11th October and am currently on Letrozole to (hopefully !) shrink the tumour before lumpectomy. Also, my husband had a total knee replacement 17 days ago and it has been a rough ride for him (and me !). I would be grateful for your advice as to whether to try pred again and, if so, how much ? Many thanks.

[SheffieldJane]

Oh dear! It sounds as if PMR wasn’t quite finished with you after all. I would honestly, with my doctor’s blessing, start again at a dose of 15 mgs and take it from there. A bit of a blow I know, but don’t let the inflammation get out of hand. The very best of luck with your cancer treatment!

[Retallack in reply to SheffieldJane]

Thank you

[PMRpro Ambassador]

Sorry to hear about the diagnosis - and I would think it is hardly surprising if it had woken up the PMR. However - it isn't uncommon for someone to be fine on 1mg, even 1/2mg and get off pred altogether only for symptoms to return a couple of months later because the underlying autoimmune disorder was still active at a very low level and zero pred was a step too far so the inflammation mounted up day after day to a level that can be felt. Like a dripping tap will fill a bucket and overflow - with no pred to scoop some inflammation out PMR does something similar.

I wouldn't go back to 15mg at this point - I would try 5mg now at an early stage and see if it does the trick. It usually does. And that saves the reducing game. If it doesn't you have lost nothing really, you can go up far more easily than down!

[Retallack in reply to PMRpro]

Following your advice my GP gave me 5mg pred and I had a blood test which has come back as normal. My symptons disappeared within 24 hours of taking the 1st 5mg. Can I just stop taking the pred or reduce and, if so, how please ? I have been on pred for 5 days.

[PMRpro Ambassador in reply to Retallack]

I wouldn't STOP - do that and you risk the symptoms returning. You might get away with 1 or 2mg. You can just switch to 2mg from one day to the next.

[SnazzyD]

Sounds about right for the timing for a buildup of inflammation from remaining autoimmune activity to give a relapse of symptoms. I’m not going to add to the Pred advice but will say, just to complicate matters, that my experience of taking Letrozole is that it can give aches and pain in muscles and joints. It is likely attributable to much lowered levels of oestrogen because even though your ovaries have shut down, some is made in the fatty tissue. The Letrozole is to try to stop even this production so your levels are even lower than after normal menopause. I had this well before GCA and remember feeling distinctly creaky and stiff.

I’m not saying it isn’t PMR by any means because the timing is perfect, but the Letrozole could also be a factor. Seeing the wood for the trees might be a challenge but a Pred increase might help do some sorting out. I certainly would involve your oncologists too.

[Heron82]

good morning, I am so sorry to read about your situation and hope it improves. I was prescribed letrozole this year for lng term prevention following breast cancer. However I decided not to take it as the side effect profile for the 1in 10 very common side effects was very similar to the PMR side effects experienced with Pred. Therefore just be aware that your symptoms may not be PMR but letrozole side effects.?

May be worth giving it a few more days to see if the worsen before making a decision to increase the pred?

Good luck. I wish you well on your journey.

[Jampel]

Hi Retallack

So sorry to hear your PMR is back. This has just happened to me as well after 6 1/2 years

I too have had a lot of stress by having a new knee new hip and a carpal tunnel operation.

For me if I had of started out at only 5mg it would have done nothing for me. I started out at 20mg only just over a week ago and I still have slight aches in my shoulders.

The people on this forum have been so great with helping me try and figure out a dosage as well. And I am feeling better everyday

I hope that you will be able to get by with a lower dose at this point

Best wishes

[Sueloucam]

oh dear, that is exactly the same as me, 4yrs of steroids, stopped early October and a couple of weeks ago, neck, arm, hip stiffness and struggling to get up, walk, difficulty in sleeping. 5mg sorted it out and have a Rheumatologist appt this week. Best of luck, look after yourself.

[Iamfedup in reply to Sueloucam]

This has happened to me too, four years on Pred off in October pains in my hips and thighs. Doctors putting it down to coming from my sacroiliac joint but I’m not sure

[PMRpro Ambassador in reply to Iamfedup]

It is very common for 1mg or even less to keep the inflammation under control - but zero pred is a step too far,