has PMR gone?! ESR levels

[Bobbiegirl]

good morning everyone and thank you for, once again, coming to my aid. I have been on prednisolone for nearly two years and after a couple of falters, am now down to 4mg daily. My GP has just tested my ESR is 7, which is low. In myself I feel very tired, and wake up stiff with aching arms and shoulders and sore where I sit. For context I have severe arthritis and should have had a thumb joint replacement yesterday b it it was postponed. My husband also has health issues so my stress levels are high. So, the big question … has my PMR gone? Thanks for listening and I wish you all well.

[DorsetLady PMRGCAuk volunteer]

has my PMR gone?

Afraid no one can tell you that… you need to be off Pred with no return of symptoms for a few months to be certain.., many think it’s gone when they are on 1mg or even 0.5mg only to find when they reduce to zero it hasn’t.

ESR isn’t the answer some doctor seem to think it is…and as you have some symptoms whilst some may be OA, some might be PMR…and would say the fatigue is probably adrenals still struggling.

[Bobbiegirl in reply to DorsetLady]

Thank you Dorset Lady and Piglette and I am sure you are both right. I actually read a post from a couple of days ago (Marion I think?) about adrenals and something she said really resonated with me, that about not wanting to do anything and I do very much feel like that, plus tearful and snappy! I will push on, staying a little longer in 4mg as I am due to have surgery and then keep slowly reducing. I have to say I am following your reduction plans not my GP who blithely told me to go straight from 5 to 4. Thanks again

[DorsetLady PMRGCAuk volunteer in reply to Bobbiegirl]

Tearful and snappy -sounds like adrenals-although I did feel a bit like that with steroid withdrawal on higher doses (GCA) .. but hopefully you shouldn’t get that with a slower tapering plan.

[Bobbiegirl in reply to DorsetLady]

Thanks again, those wretched adrenals 🤣

[Lopera in reply to DorsetLady]

I'm very tearful too but not snappy. I wondered if that was due to the medication.

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

Could well be -or a combination of meds and illness

[PMRpro Ambassador in reply to Lopera]

Could be either - but if it was better at higher doses of pred, it is more likely to be low steroid levels in adrenal insufficiency.

[SNOWMAN546 in reply to Bobbiegirl]

I had the exact same symptoms - extreme fatigue, tearful, lack of motivation, etc - thought it was either adrenal or steroid withdrawal (I was on 4.5mg) but it turned out my folic acid levels were extremely low. After just a week of 5mg of folic acid a day I was back to my normal self and 5 weeks later I feel so much better. Not sure if you've had all your bloods checked recently but just thought I'd share my experience. Funnily enough my ESR levels were 'normal'. Going back to the gp next week for a follow up so hopefully she can shed some light on the results💡 🤞

[Bobbiegirl in reply to SNOWMAN546]

Gosh, interesting, will get it checked. Thank you

[piglette]

The tiredness is probably due to your adrenal glands having to wake up. This can take up to a year after you have got to zero. Carry on reducing if you feel fine re the PMR symptoms and hopefully you should get to zero with no problem. Sadly at 4mg you cannot really tell if the PMR has gone into remission.

[PMRpro Ambassador]

You will be able to say the PMR has gone when you are able to taper and stop pred altogether for about 6 months without the symptoms returning. All the ESR can tell you as long as you are on pred is that if it is stable and low you are on enough pred to manage the inflammation and if it starts to rise slowly without another reason such as a cold or other illness or injury, then it is likely the dose is now too low to manage the inflammation and you need a bit more again.

It sounds to me as if you are on the bare minimum for YOU at present - if you take a tapering holiday and stick at 4mg then you may find the weak and watery feeling improves slowly over a month or two as the adrenal glands get the message you need a bit more corticosteroid. And if the aches and pains worsen during that time - you may have to consider the PMR is still chugging along and not quite controlled by the current dose.

[Bobbiegirl in reply to PMRpro]

Will stick at 4, and thank you