What to do?

[Pangolin43]

Hello,

After reducing down Pred to 4.5mg I experienced a lot of PMR pain and a sharp rise in CRP and ESR. Rheumatology agreed it was a flare and advised going to 10mg for two weeks which fits in nicely with advice given here. I will be taking day 14 (two weeks) of Pred this evening and was going to drop to 7 or 6 milligrams tomorrow as reducing to 5 feels like too much of a drop. (I’m having a blood test tomorrow to check inflammation). It’s taken a full two weeks to get the flare under control. However I received a letter from rheumatology this morning which says if my bloods are ok to start reducing 1mg per month until I get to 5mg and then a PET scan to check if there is something else going on!! What do you knowledgeable people think?

On another note. Is it advisable to fast before an HbA1c test?

[piglette]

No you do not need to fast before an HbA1c test.

You are on the edge of having to taper, so I would listen to your rheumatologist and do what they suggest. You are lucky to get a PET scan they are like gold dust, as they are pretty pricey.

[Pangolin43 in reply to piglette]

Thank you Piglette. Apparently I have to reduce to 5mg first. The rheumatologist explained to me that anything more than 5mg of Pred messes around with the glucose levels in your body and the scan result isn’t accurate.🤔

[piglette in reply to Pangolin43]

As PMRPro says doing a PET scan when on pred is not ideal and pred can distort the figures so the lower the dose the better.

[PMRpro Ambassador]

Hba1c is a reflection of the average blood sugar levels over the previous 3 months or so. Fasting for one night won;t change it.

Hallelujah for a rheumy who knows pred and PET scans don't really go together! It is up to you - if it is just a flare from overshooting you will be OK to go back to 7mg and that also gives you loads of time to get to 5mg again. Only one way to find out.

[Pangolin43 in reply to PMRpro]

Thank you PMRpro. The rheumatology nurse told me I was lucky to have the rheumatologist I have. She described her as ‘forensic!’ After my last appointment she emailed me links to information and research around diet, lifestyle, pain management etc. I know that stuffs out there but it felt good to discuss it as part of a medical appointment. Gave me lots of food for thought 🤔

[PMRpro Ambassador in reply to Pangolin43]

Where are you?

[Pangolin43 in reply to PMRpro]

London

[PMRpro Ambassador in reply to Pangolin43]

She needs highlighting - London has been a bit of a desert! With few utter famines ...

[piglette in reply to PMRpro]

I am just so impressed that the blood can have such a memory, God is clever. I am also impressed whoever discovered the HbA1c test as well.

[Koalajane in reply to piglette]

I have to say I am always amazed at how much a blood test can show. The hba1c amazes me too.

[Bluey-1 in reply to Koalajane]

Me too. In my naivety pre GCA I didn’t realise how many different things can be seen via bloods. Thought it was just liver function, cholesterol, general blood count. I’m much more informed now.

[piglette in reply to Bluey-1]

New blood tests seem to coming out all the time. Really impressive.

[ChinaWuntoo]

Pangolin43. I, too got to 3.5mg. GP put me up 1 mg, didn't work (I think he was testing things and I am not complaining). Then GP , without any question, agreed to me going to 10mg for 2 weeks, then 6mg for 3 weeks then back to very slow taper. I am in the second week of the 10 mg and have to say it seems to be good. Blood test next week.

It is thanks to this Forum that I felt able to strongly suggest the recent increases and possibly thanks to this Forum that the GP might have swatted up on PMR?

You are in London? Not East London is it? I'd be interested to know the NHS Trust. I got rid of my Bart's rheumy. Have heard good things here about Romford.

[Pangolin43 in reply to ChinaWuntoo]

Thank you for your reply ChinaWuntoo. Your situation sounds very similar to mine. After reading both your post and the brilliant advice on this forum I’m erring on the side of a reduction to 7.5 starting tonight. I do feel anxious though. My NHS trust is Greenwich and Lewisham. Good luck. 😀

[ChinaWuntoo in reply to Pangolin43]

I think that what others say here, it is a case of try it and see. Then if it doesn't work try something else. I too get nervous when I change dosage. We're all in the same boat - or you could say we're all in different boats because everyone's experience is unique to that person.

Lewisham and Greenwich would be fairly easy for me - just across the water. I will keep this in mind if my GP ever suggests seeing a rheumatologist.

Thanks.

[PMRpro Ambassador in reply to ChinaWuntoo]

All in the same ocean - in different forms of transport ...

[ChinaWuntoo in reply to PMRpro]

But not drowning.

[Missus835]

You are so fortunate to have found a Rheumy who listens and actually knows something. Sadly, I have not been that lucky. Cheers on the PET scan. I can't even seem to get an MRI here in Nova Scotia. She would rather "guess". A little salty this morning.

[PMRpro Ambassador in reply to Missus835]

She wouldn't be "guessing" with my medical management. That is appalling and I would make an official complaint however your complaints procedure works.

[Missus835 in reply to PMRpro]

I know Pro. I rec'd a letter scheduling an appt. for July 17 (over a month away). This letter was dated May 29th. I had new tests and x-rays of hips, low back and T-spine done on May 31. I just called the booking desk to say perhaps once Rheumy sees results of x-rays and tests, she may (or may not) want to move the appointment ahead. Of course, it's always leave a voicemail and wait. Also was into ER on Monday past re the sore on my buttock which is healing well, but I'm unable to actually see it. Also they put me on a strong anti-biotic for recurring UTI and possibly diverticulitis. Would it not be "common sense" that Rheumy would want all this info prior to seeing me whether it be on July 17th or sooner, realizing common sense is not a flower that grows in every garden? I'm trying to get a step ahead here for her sake actually. I've also contacted my former neurologist to see if he would be willing to take me on again. Not surprised is Rheumy is going on vacation actually.

[Pangolin43 in reply to Missus835]

Thank you Missis835. I hope it continues. Sorry about your experience.