Adrenals

[Uglow]

Do most people’s adrenals kick in when pred lowered. 😩

[DorsetLady PMRGCAuk volunteer]

See this post - healthunlocked.com/pmrgcauk...

[Uglow in reply to DorsetLady]

Thank you I knew this info was on group just couldn’t find. X

[jinasc in reply to Uglow]

I look in FAQ's when I am lost - brilliant as their is loads of answers to queries.

[PMRpro Ambassador]

In all my years of the forums (12+ and 3 different forums) I have only come across about 3 people whose adrenal function was poor enough to require ongoing pred.

[Uglow in reply to PMRpro]

That’s a relief. Xx

[Constance13 in reply to PMRpro]

Wow! Is that true? My doctor told me 2 or 3 years ago that I would probably on Pred for

life. I really should insist on an adrenal test.

[Longtimer in reply to PMRpro]

How I'm feeling I will be scared to lower for a while from 7 mg....I am struggling to get out of the chair.....shaky, dizzy, no appetite, so weak. Can't understand why an End o won't see me. I am wondering if I pay to see one privately they could prescribe me HC......after all, no inflammation now....just don't want to be the 4th person you have come across!.....Max did say after 10 years on pred, it might be that I have to stay on 5 mg forever.....

[Uglow in reply to Longtimer]

I paid to see rheumatologist at first. Not sure where you are but I went to go first got as many bloods that would be relevant before so I didn’t have to pay for them. I later got nhs appointment and it was same rheumatologist which was lucky coz I had a bit of continuity.

[Longtimer in reply to Uglow]

Thank you, I have a brilliant Rheumy, who is quite frustrated with my situation, I mentioned to him about paying to see an Endo, he said, but you shouldn't have to.....I agreed, but feeling this ill, I just want to know if HC can be prescribed, or other tests can be done.....(I'm in Norfolk)

[Uglow in reply to Longtimer]

HC ?

[Longtimer in reply to Uglow]

Hydrocortisone, taken 3 times a day instead of Prednisilone, it doesn't seem to help people who have pain as well as adrenal problems for PMR...think.it helps with.adrenals longer throughout the day....

[Sho-Sho in reply to Longtimer]

I have been on pred for over 5 years due to GCA, for the last 18 months really struggled to cope with excessive fatigue - my Rheumi sent me to see an Endocrinologist, who first did a Basal Cortisol blood Test (your doctor can do that) to see what my levels were, I then had the synthacen test in hospital. At the moment my adrenals are not functioning at all (I am on 5mg pred) - the plan now is to try to reduce to 4mg & on the way every six weeks the doctor is giving me the Basal Cortisol Test. At least you then have some knowledge as to whether your adrenals are awake!

[Longtimer in reply to Sho-Sho]

I had the basal cortisol test 6 months ago, it was 92, very low, (what was your reading?) I have in the last couple of months tried very slowly to drop to 6.5mg, but I can`t function, I could lay in bed all day!....I struggle even now back to 7mg to walk about my house.....My Rheumatologist is concerned about this so has told me to stay for now at 7mg. He tried to get me to see Endo, but they won`t until I am at 5mg, this is why I am thinking I will have to go private....I am having another basal cortisol test in December......at least you know every 6 weeks if things are changing.

My OH and family cannot believe there is no treatment for this and how ill I feel. Getting depressed now not even being able to walk!.....

How do you feel?

[Sho-Sho in reply to Longtimer]

Hi - I reckon I function at about 50% of what I was like before - to be fair it was over 5 years ago when I was diagnosed with GCA & am now 76 so prob would have slowed down a bit anyhow. What I hate about it is if I do a little too much I feel not just exhausted but so unwell.My Basal Cortisol test result was 57.6, so pretty rubbish. The Endo I see is a highly experienced Professor specializing in Adrenal issues. In his opinion adrenal insufficiency can start to kick-in at 8.0mg & believes in testing at this level despite others who won’t see you until you have reached 5mg. He wants me to try to taper to 4mg (I am at 5 now) obviously very very slowly if I can cope with it. I did sit at 7.0 for nine months because,

like you are finding, even the tiniest attempt to taper made me feel grim.

Can’t believe it’s such a struggle, but keep on trying.

[Uglow in reply to Sho-Sho]

I hate feeling this rubbish all the time. It’s so hard to live when every fibre of your body says oh just sleep 😢

[Longtimer in reply to Uglow]

Totally agree!....

[Longtimer in reply to Sho-Sho]

Gosh, I though my reading was low at 92...you are so lucky to have the End o support you, do you get told if your cortisol readings have raised?....I have been at 7 mg for 6 months, nothing has changed as far as symptoms...very hard struggle!....sometimes shaky, breathless, feel faint, especially if I'm on edge and have words with OH!...... not good to get stressed,

As you say we keep on trying.....

[Sho-Sho in reply to Longtimer]

The Endo has written to my GP re having a Blood cortisol test, my doctor rings me with the results.The Endo has said there is no point in having another synthacen test until the basal cortisol reading is above 100. A long way to go - he is pessimistic!

[Longtimer in reply to Sho-Sho]

Such a battle, so it is rising slowly I presume? I have come to the conclusion, no-one really knows too much about adrenals!......only us when there's not enough cortisol!!....

[Exflex in reply to PMRpro]

I was going to ask you if you know whether there’s a relationship between the length of time an individual has been on Pred. But 3 cases is a very low number to draw even the smallest conclusion. PS whilst seeing my GP for a non PMR condition he took the opportunity to ask about my Pred. At the time I was pausing on 6.5mg due to a flare following the flu jab; he nodded but gave me a reminder to resume the taper as soon as... And reiterated it was important to go small and slow with reduction to allow time for the adrenals to respond. (I’m now more or less at the tail end of the 6.5 to 6 taper.)

[cranberryt in reply to Exflex]

The longer you are on prednisone, the longer it takes for adrenals to turn back on. I read one article that suggested if you are on prednisone for 6 months, it could take 6 months… 2 years, then 2 years, etc. I am at 3mg and stuck myself so I could be in that waiting period. Time will tell I guess!

[Longtimer in reply to cranberryt]

Oh dear, have been on pred 10 years and counting!!

[Lafontainepam1 in reply to Longtimer]

Me too!

[Longtimer in reply to Lafontainepam1]

Perhaps we should have an oldtimers club!!How are you feeling after all these years?

[Constance13 in reply to Longtimer]

I would love one - oldtimers club! There are so many newcomers that a few of the oldies seem to have disappeared.

[Longtimer in reply to Constance13]

Yes, I agree....Dare I ask how you are?.....

[Constance13 in reply to Longtimer]

😂😂 Not doing too badly actually. Get very tired but at my age......?

Pain worst in the night. I take one Cocodamol every 4 hours. Could do with it every 3 hours but I'm very strict with myself.

PMR is behaving itself. I wouldn't say it was gone but I manage on 4mg alright.

Hope you're rolling along OK too.

[Longtimer in reply to Constance13]

Not rolling along ok, feel the worst I have for years....but I'm fed up up telling friends and family why I'm housebound, with no answers!....thanks for asking, glad you are coping ok..👍...

[Constance13 in reply to Longtimer]

So sorry to hear you're not doing so well. With us "longtimers" it's a bit difficult to see where it will end (or if it ever will).

Still, PMR or GCA don't kill, so at least we don't have that to worry about.

The weather has a lot to do with my health - now it's getting colder/damper I find the arthritis and gout don't like it!😂 We'll survive!

💐💐🍀🍀

[Maltesemama in reply to Longtimer]

I’m an old timer. Have been on prednisone, 2 1/2 Meg for life. Think I’ll ask my Doc for an adrenal test. At first he said I’d need 5 mg. But he allowed me to get to 2 1/2. Skin still thin and full of bruising, but that’s probably age and lifelong on again and off again prednisone. Good luck fellow “oldsters” and youngsters too!

[Lafontainepam1 in reply to Longtimer]

I had back surgery two years ago which left me with numbness in my right foot, this has been my cross to bear! The PMR, just trying to get my prednisone down to at least 5 mg. I had been on 10 since my surgery. My new Dr. wanted me to decrease, so starting in September I have dropped a mg. a month. Now at 7! Had some bad times at the beginning of the months, then levels out. So we will see if after all this time I get a flare or not!😎

[Longtimer in reply to Lafontainepam1]

You are doing well....fingers crossed for you..

[PMRpro Ambassador in reply to Exflex]

Depends on the person - DadCue had been on high dose pred on and off (mostly on I think) for many years but his adrenal function seems to be fine. Others may be affected in a much shorter time. Reduction in adrenal function happens with age anyway.

[Miserere in reply to PMRpro]

That really is a relief - thank you!