Is there a blood test~~pred withdrawal: ... - PMRGCAuk

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Is there a blood test~~pred withdrawal

Grammy80 profile image
Grammy80
โ€ข24 Replies

hypothalamic-pituitary-adrenal-axis (HPAA) function....I have read a lot about this with Prednisone withdrawal. Is there a simple blood test to evaluate this? Thanks๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ‘ฌ๐Ÿ’—

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Grammy80 profile image
Grammy80
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Hi Grammy, if you mean getting symptoms tapering say from 15 to 10, not really. But if you mean getti g to 3mg or 5mg and test whether your adrenal are capable of kicking back in then yes, there is a test, but more than a blood test as I understand it.

healthunlocked.com/pmrgcauk...

I don't know if this will help but here's something to read.

medicinenet.com/steroid_wit...

Grammy80 profile image
Grammy80โ€ข in reply to

Thanks so much...I have so much to learn...I'm at 8mg now and seem to be be doing well...I'll be at this dosage for a month...all things being equal. I read a lot about the 'glands' and wondered.๐ŸŒธ๐Ÿ’—

HeronNS profile image
HeronNS

labtestsonline.org.au/learn...

This is the test which can be used, but as Scoopitup says not until you are at a low dosage. It is simply not helpful unless you are at least as low as 5 mg and some doctors prefer a bit lower than that. What it will do is show whether or not the adrenals are able to produce cortisol. A very few people end up with adrenals which can't seem to wake up again and it's important to know this as they will need a maintenance dose of corticosteroid for life and possibly will need additional in cases of stress or illness. But, I reiterate, this is an extremely rare result of long term pred.

Grammy80 profile image
Grammy80โ€ข in reply toHeronNS

๐ŸŒธ๐Ÿ’—

PMRpro profile image
PMRproAmbassador

As Scoops says, not until you get to lower doses, below about 5mg. Then they can check if your adrenal galnds can still produce cortisol on demand - but not whether they are doing so reliably. They go by symptoms and there are other tests they can do if they think it is appropriate.

Grammy80 profile image
Grammy80โ€ข in reply toPMRpro

๐ŸŒธ๐Ÿ’—

SheffieldJane profile image
SheffieldJane

I have had PMR for 4 years. I am having my third Synacthen Test on Thursday. I am on 4 mgs. I donโ€™t take Prednisalone on the morning of the test. They put a cannula in my hand, take some blood, give me an injection of a chemical that stimulates the Adrenal function. I wait for about half an hour, then they take more blood. They then measure the response. It tells them whether my own Adrenal glands can produce Cortisol. I failed the first test, largely because I was on 6 mgs of Pred ( too high a dose). I had a second test later when I had dropped down to 4 mgs and the response had normalised. I expect this one to be normal too. Our own function switches off while we are on Pred . Some people start to get symptoms at around 7 mgs that indicate that their own Adrenal function is beginning to wake up. I found tapering a struggle from 7 mgs and ended up there for a year. This is obviously not the science, just my experience of it all. Itโ€™s a wee way off for you. How are you?

Grammy80 profile image
Grammy80โ€ข in reply toSheffieldJane

Lots of great info....I have learned from this forum that it can begin to be a different ballgame once you get down to single digits. Very interesting about the test itself? How do people know their adrenal glands are not functioning up to par? Usually when I taper I am so tired but this time I am not...I wonder if it is the Gabapentin? I do know I've had a good 4 days on 8 mg. You take good care, you are always in my thoughts. ๐Ÿ’—๐ŸŒธ๐Ÿ’—

SheffieldJane profile image
SheffieldJaneโ€ข in reply toGrammy80

Well my body just wasnโ€™t ready to taper, symptoms came and stayed every time I tried. I was tired like during pregnancy, suddenly and swooningly. I was often awake and lively in the early hours - like now. Some people donโ€™t experience any symptoms at all even when they are dangerously low. When you are on around 3 mgs, that is probably optimal for a test. Before then, you are fairly safe providing it with steroids. 4 good days on 8 mgs is great. Still keep it slow and steady. You may glide down like a lovely swan.

Enfin profile image
Enfinโ€ข in reply toSheffieldJane

Wonderful description of the tiredness โ€˜suddenly and swooninglyโ€™ !

Grammy80 profile image
Grammy80โ€ข in reply toEnfin

Isn't that the truth~!

Grammy80 profile image
Grammy80โ€ข in reply toSheffieldJane

You have a very expressive way of writing~! I can almost feel myself swooning~~no kidding. This morning I went to church, felt really good~I just love being around people and feeling like I can comprehend the conversations. When I came home I just 'swooned' my way into a 2 1/2 hour nap...and then took a walk~! I'm so grateful for the way I feel...I have not felt like this since last August. I know I may still have bumps but I'm just reveling in it~!๐Ÿ’—๐Ÿ’—

SheffieldJane profile image
SheffieldJaneโ€ข in reply toGrammy80

Thatโ€™s the trick accept and go with it. ๐Ÿฆข

Estellemac profile image
Estellemacโ€ข in reply toSheffieldJane

I feel better for reading this SJ. Stuck at 8 for now. In yr 5 of PMR and inpatient!!!

Gaz227 profile image
Gaz227

I have been on 2.5mg a few times if I go any lower it all goes pear shaped , maybe this is the test I need , I get the feeling on the NHS itโ€™s all about money, getting things like this done is a challenge , for me anyway , Iโ€™m still struggling to get an appointment 11 months now . ๐Ÿ˜ฉ

PMRpro profile image
PMRproAmbassadorโ€ข in reply toGaz227

Pear shaped in what way?

Gaz227 profile image
Gaz227โ€ข in reply toPMRpro

Generally feeling unwell joint and muscle pain lethargic , I accept withdrawal pain is going to happen , but it doesn't ease up Iโ€™ve waited 2weeks after a reduction and just deteriorated , had to jump up again , tried at least 5 or 6 times to drop below 2.5 and same result , might try 2 and a quarter next time for a couple of weeks and see if that gets my body to adjust

Grammy80 profile image
Grammy80โ€ข in reply toGaz227

Everyone is different~~when I get to 2.5 I think I'll just say YIPPEE~!๐ŸŒธ๐ŸŒธ

PMRpro profile image
PMRproAmbassadorโ€ข in reply toGaz227

That sounds like it could possibly be PMR effects too - however slowly you reduce you won't get below the target: the lowest dose that manages the inflammation and gives you a good quality of life. When it happens repeatedly at the same dose it is your body shouting at you to give it a break and if you are getting wrose over the time you remain there it is just conformation. If it were withdrawal it would improve over the following weeks, not worsen. 2.5mg is such a low dose I wouldn't be pushing - take a few months rest and then try again.

Like Grammy - if I ever get there I'll take it and run!

Gaz227 profile image
Gaz227โ€ข in reply toPMRpro

Sounds like good advice ๐Ÿ‘, I know this is a how long is a piece of string question , but what is the sort of average withdrawal pains should start calm down . If after 2 weeks you still felt rough would you increase ?

PMRpro profile image
PMRproAmbassadorโ€ข in reply toGaz227

Depends - some people don't have any, some people it is up to a week but I have known people who said it was up to a month and they didn't really feel well until just before they reduced again. By making the change in dose as small as possible and using a slowed taper approach you also reduce the likelihood of having problems - some people find they can't do more than 1/2mg at a time and there are some who do 1/4mg!

Gaz227 profile image
Gaz227โ€ข in reply toPMRpro

Iโ€™m going to try quarters this time and see if I have any success ๐Ÿ‘

granny-b profile image
granny-b

Hi, I had the test and the result showed the adrenals were back in business. A few months later I was diagnosed with LVV. When I asked about the test result my consultant said the adrenals had gone into overdrive.!!

Grammy80 profile image
Grammy80โ€ข in reply togranny-b

There seems to be one constant~~unpredictability~!๐ŸŒธ๐ŸŒธ

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