After 14 weeks I have my follow up blood test from PMR diagnosis in October on Wednesday. I can’t remember how many hours I should hold the prednisone before the test? I’m hoping for normal ESR and CRP levels so I can begin to taper the prednisone down on the 30th after the test results debrief with my GP. Luckily I’ll be able to compare the GP’s plan with the rheumatologist I will see on the 6th of February. Formulating a list of questions for both and will be interesting to compare their answers. The most important questions being the tapering schedule and recommendations for prednisone increases during a potential flare. I don’t have extra prednisone to increase my daily dose by 5mg for 7-14 days so would they provide the extra prednisone should that happen? We obviously don’t have Prednisone user or emergency cards to carry in this country that I have heard of. Or do we?
Blood test Wednesday. : After 14 weeks I have my... - PMRGCAuk
Blood test Wednesday.
You don’t normally need to cease Pred for ESR/CRP tests.
You need to discuss the possibility and action re flares with both doctors.
Alnrt are happy for you manage them yourself - others aren’t! So best to clarify from outset
Thank you, I take the prednisone at 2:00 AM and the blood test is scheduled for 9:00 AM. The prednisone should have a good effect on the release of cortisol so the the levels should be close to normal if I’m taking enough Prednisone ?
If you are having ESR/CRP tested that’s for inflammation levels -ie to ascertain if Pred is sufficiently controlling them. But as we always say they are only part of the equation when considering a taper -symptoms or rather no symptoms is important.
ESR/CRP tests just test inflammation levels full stop -they aren’t specific to PMR.. but any inflammation.
PMR with its classic symptoms and inflammation levels in ESR/CRP are enough to diagnosis it, but there could be other issues also adding to the inflammation levels is what could happening in some cases? What additional tests could be taken to to sort that out?
Do you means other tests why inflammation is raised - or other tests for PMR and/or GCA .
See this re CRP/ESR -
medcentral.com/pain/chronic...
Re steroid cards, there are oodles of downloadable ones online - or get a medical alert bracelet…
I ment other test like PET SCANS Sorry , I confused the personnel reference cards being medically sponsored by the state instead of buying them online for emergency notification.
As you say PET scans,MRI, ultrasounds depending on which country you reside.
In UK the asteroids cards should be issues by pharmacy on first prescription, not always. And you can download from charity website free of charge.. but that obviously no use to you..
I think you are a bit confused about what is being tested at this stage, but probably your inflammation markers, ESR and CRP, which should be a lot lower than at diagnosis if the pred is doing it’s job.
After about three weeks on pred your normal adrenal function will have shut down because you are providing more than enough cortisol in your dose. Until you reduce the dose to about 7mg the adrenal glands remain dormant, then respond badly to being challenged to work again as you taper through lower doses. That’s a whole new aspect to add to your relationship with PMR. Sadly it’s not simply a matter of taking the drug, stopping the pain, following the tapering schedule and returning to life as normal.
They don’t tell you this at the start, but adrenal insufficiency lies ahead of you however you mange the treatment. Flares can be avoided if you manage the dose and your lifestyle right, but there will come a time when your adrenal response lags behind and this can make you feel pretty ropey. Your adrenal glands can be tested when you reach about 3mg to see if they are still prepared to work, and that is when you need to remember not to take your meds for 24 hours.
You might want to ask about this at your appointment but I’m afraid you have a long journey ahead of you before you need to deal with this. And this forum is the place to be as and when you get there.
Thank you, I think I read about this early on. Just trying to put all the pieces of the pie together for the questions for the GP and Rheumatologist in two weeks. I haven't felt very comfortable being on prednisone for 14 weeks and no contact from my GP ( just her nurse with very limited knowledge about PMR) or no appointment with a rheumatologist. Thank goodness for you great people on this site!
You don't hold pred for day to day testing - only when cortisol is being checked in a synacthen test.
Thank you, and if the adrenaline glands aren’t producing cortisol is it a prednisone issue or failing glands?
It isn't an "issue" - it is a NORMAL, PHYSIOLOGICAL response by the body to there being more corticosteroid present in your system than is required for normal functioning.
I explain it by likening it to having central heating AND a wood burning stove heating the same room where the thermostat is. The wood burner (the oral dose of pred) is on - the thermostat (the HPA axis) registers it is warm enough and tells the boiler (the adrenal glands) that no more heat is required in the central heating system and the boiler doesn't kick in. It is ALL explained under Adrenals in the FAQs
When the adrenal glands are not being used to produce cortisol over a long period, they do struggle to get going again as the pred dose falls but that isn't relevant until your pred dose is down to about 5mg - above that, and possibly even lower, the oral pred acts as a replacement for natural cortisol. You are nowhere near that stage yet.
Stop overthinking it all.
Thank you, you’re right. I m really put out that this happened to me when I thought I was doing pretty good for an old guy! Just have to learn to deal with it.
Well yes - but we are all in the same sea, albeit with different boats. And actually, I think I'm still not doing too bad compared with a lot my age!!!
Younger or older at diagnosis, I’m sure we are all put out by this tiresome condition being diagnosed but it is often the highly motivated, driven types that present with it. That makes it all the more difficult to learn to manage it. We all wonder where it came from, what we did to bring it on, and how quickly we can get rid of it, and our doctors don’t really help by telling us it will be all over in two years and we just take the pills
Here on this forum we know what it is really like and we share our knowledge and understanding while the medical profession SLOWLY learn more due to some very dedicated rheumatologists conducting studies and writing papers on the subject. You will find reference to them here, thanks to PMRPro, who is lucky enough to have one of the best practitioners in the World in her team.
I hope you are lucky enough to have a good team who listen to you. This is a marathon not a sprint, PMR is life changing but not life ending and once you accept it you will find yourself again.
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synacthen test, what does this mean?
