Update on symptoms unrelated to PMR on low dose Prednisolone.

[larkthebark]

I posted a few weeks ago that I was suffering from fatigue, abdominal pain, low pulse rate and blood pressure on 2mgs of Prednisolone but no PMR pain. (Commenced Pred in May 2020 for PMR}

I went to see a very understanding GP, new to the surgery, who was extremely helpful and definitely more sympathetic that the PMR journey can be very prolonged and requires individual tailoring to suit the patient.

As I was away in Germany for 2 weeks after my consult, we decided to check my bloods on return and today I had my follow up appointment.

I am delighted to report that all my blood were normal (despite contracting flu whilst on holiday) and my lovely GP was very interested in this site and the information it provides.

My adrenal function is satisfactory, and my CRP was 1. Although I still have the same symptoms they do seem to be gradually improving and my blood pressure and pulse rate are improving.

We agreed it was best to continue with a very slow wean to avoid a flare and he told me to juggle my pred according to how I felt.

He wants to see me again in January even if things are going well .

During our conversation he agreed that patients very often become experts in their disease and that GPs should respect that.

What a gem !!!!

So, all being well, I may be signing out in January, but never one to presume, I shall continue to listen to my body and take things slowly.

Thanks again to this wonderful supportive site.

The picture was taken in Bamburg.

[DorsetLady PMRGCAuk volunteer]

Sensible GP! ..and yes a very slow taper -you might feel great on 2mg, but there’s a huge difference between that and zero… so no upsetting the apple cart.

Best of luck 😊

[PMRpro Ambassador]

I thought it was Bamburg when I saw the photo - was a lovely day out when we lived in Erlangen, just a bit south,

As DL says, 2mg is a massive dose in the context! It is plenty both the replace any lack of cortisol and also to keep PMR inflammation well under lock and key. So don't get too fixated on being off pred by January. Apart from anything else there is Christmas in the meantime which might try to put a few stumbling blocks in the way!

But fingers crossed it all goes well.

[EdithWales]

Lovely picture. I was there in May

[Exhiker]

Sounds like a great GP , if only my rheumy was the same.

[larkthebark in reply to Exhiker]

Seems unreal that even some Rheumatologists don't get it when it comes to PMR .There is no point in trying to rush the PMR journey and reduce steroids too quickly.

Flares are painful, depressing and negative and increase the risk of complications ,yet it seems our biggest battle is to change the opinion which is the opposite of PMR pro's mantra.

' You are not relentlessly aiming for zero '.

[Exhiker in reply to larkthebark]

Yes, so true what you say. I have been told to come off pred over next 2 months, no matter what. I will be back to square one.

[larkthebark in reply to Exhiker]

Reading your profile , I think you were diagnosed in September 2020, 5 months after me.There is absolutely no way I could have had a period without steroids in those 2 plus years . It must have been frustrating, painful and infuriating when your GP stopped them .

[Exhiker in reply to larkthebark]

Yes it is frustrating. Had no luck with doctors. I'm glad you have a decent one though, I wish you continuing success with tapering.

[HeatherZim]

Hi Lark. My PMR symptoms are extreme pain. I have been on Prednisolone for more than eight years now and have only recently managed to reduce to 5mg. Within a month I was in the grip,of a bad flare. I am now back on 15mg and will, once the flare has dissipated, start the long journey reducing the dose. It’s a long, tough ride. Good luck.

[PMRpro Ambassador in reply to HeatherZim]

Often if the flare is just due to reducing a bit too far, adding 5mg to the dose where you flared is enough, rather than going back to the start and the long trek back. If you are lucky, if the flare calms down in less than 2 weeks, you can drop straight back to the last dose you were good at.

[larkthebark in reply to HeatherZim]

Sorry to hear this and hope you saw PMR pros advice.I hope you get over your flare quickly, 8 years is a long time and I feel very fortunate so far .

But I am in no rush and may stick on 2mgs until after Xmas despite being pain free.

It's a busy time coming up and I am well aware that a flare is always a possibility.

[Q-owl]

Hi Lark, I'm an owl!I've reduced steadily and slowly over 3 years to get down to 2mg. Since then over the last couple of years, I've been alternating between 2mg and 1.25mg (that's a 2.5 split in two). When I'm doing well I manage the lower dose twice in a row, but the original pains and stiffness soon starts up. Currently two days lower dose, one day at 2mg. My rheumatologist says I am alright to stay at 2mg permanently for life. Perhaps so, but I keep trying to get down to 1. 25mg a day.

I hope you have better luck, but you can live on a 2mg dose. I don't fight PMR, just try to sneak in a lower dose when I'm feeling on good form.

[larkthebark]

Very interesting Owl ! Although my main problem on reduction is tiredness and intestinal cramping. I haven't had any typical PMR pain for about 2 months.

However , who knows ,as my GP pointed out too, PMR doesn't always go away completely, and my symptoms might still be linked to PMR.

Its reassuring that there are people out there who struggle with the last few mgs as I was beginning to think it was my imagination.

I am quite content to sit tight on 2mgs for now and thanks for the advise on splitting tablets.

All being well i plan to continue with a slow reduction after xmas.