Adrenals

[mega]

Does anyone know if age is implicated in restarting the Adrenal function - or whether it is influenced by the Thyroid gland too?

Any answers would be much appreciated

[AnneP01]

Dear Mega, I have been wondering the same thing. I've just failed another attempt DDNS to reduce from 6 to. 5.5 so I hope you don't mind I've followed your post.

[mega in reply to AnneP01]

Not at all AnneP01 and sorry I've taken so long to reply. I've had a bad week - just one day when I felt anything like the old me and remembered how great it was!

I've been on 5mgs of Pred now since the Autumn and can't get any lower. Am still experiencing the horrible side effects too.

I sympathise with you in your struggle - are you on other medication too? - and hope we can both learn something from any replies.

Best wishes.

Mega

[AnneP01 in reply to mega]

Thank you for replying Mega

I did get down to 3.5 about four years ago but due to my husbands difficult illness my pred had to go up. He had Alzheimer's.

Since he sadly died last July and I was feeling a bit better physically with no discernible symptoms I tried the DSNS method to get down to 5.5 but no luck all the symtoms came back. As to other medications phew! Obviously prednsolone, vitamin D, anti histamine, certaline (I had this prescribed when I couldn't cope with my husband but I hope to come off it soon) tramadol paracetamol, statin, propranolol to try to stop my hands shaking. God what a mess I am other localised medicines and to cap it all I've just started on 70gm alendronic acid as I have been told I have osteoporosis in my spine. Some of the pain in my shoulders and knees are arthritis I think.

Please could someone tell me the readings that are ok for CRP and SER? I can now ask for a print out when I next go to the surgery.

Do you suffer from a tender scull/scalp mine feels so sore in an evening and so I have an unpleasant headache but not like the 'killer' ones I had at th beginning of this illness. I only found this site fairly recently as I had no time to think about it before. It has been a wonderful source of knowledge and comfort to me.

Sorry it's such a long post. Anne

[PMRpro Ambassador in reply to AnneP01]

The print out should have the normal range for the lab where they were done but a normal ESR is up to 20. Many doctors allow higher readings as "normal" in older patients but the expert consensus is that that is indicating some inflammation somewhere so it isn't normal.

The usual CRP test can't detect the level of normal CRP accurately - it is usually given as less than 1 (or 10, it depends on the units they use).

[AnneP01 in reply to PMRpro]

Thank you I appreciate your help.

[PMRpro Ambassador in reply to mega]

Mega - what sort of horrible side effects?

[Brixhamhampster]

Hello mega, I too would like some information about age and adrenal function. I am reducing to 4mg per day and no pain but very much more tired even though I am pacing myself as carefully as possible. I am 75 years old to give you an idea if we could be similar. What would we do without this forum. We would be completely in the dark.

[DorsetLady PMRGCAuk volunteer]

Hi mega,

Don't know the answer, but I always thought that my adrenals were very slow off the mark in getting going again because I had been on Pred for a long time -albeit not as long as some - and, very high doses, certainly at the beginning. I was mid 60s when trying to get things going again.

Trouble is Pred affects lots of other hormones etc so it's difficult to know what to blame for what!

[PMRpro Ambassador]

Age doesn't have to play a role in restarting adrenal function - people in their 80s have got off pred with no problem and people in their 60s have adrenal insufficiency - other than adrenal function does fall off as we age anyway. Some experts believe there may be an element of adrenal malfunction of some sort involved in developing PMR, patients with PMR often have low adrenal function. Is it cause or effect? No-one knows.

The adrenal glands are part of a complex interlinked system called the HPA axis - hypothalamus, pituitary, adrenals - and there are several other organs and hormones that are part of it. The thyroid is also involved. The pituitary gland produces thyroid stimulating hormone to tell the thyroid to make thyroxine as well as a hormone that stimulates the adrenal glands. So obviously if the pituitary isn't working properly - both adrenal glands and thyroid won't necessarily be performing properly. It's horribly complicated and I can't explain it correctly and easily. I could have once...

It is all interlinked and shoving one bit out of line upsets the rest and a balance has to be found again - that's why it can be so difficult reducing pred!

If you repeatedly fail to reduce at a similar dose - that probably means that you have reached your initial goal: the lowest dose that manages the inflammation and the symptoms as well as the starting dose did. Wait a couple of months and try again. You are never reducing relentless to zero - you have to remember that. You are looking for the lowest dose that works. It may be just a couple of mg but it may be much more, everyone is different in how long their PMR lasts and how severe it is.

When the fatigue increases as you reduce below about 5mg it is a sign your body isn't keeping up with topping up with the production of cortisol so you have enough steroid for your body to work properly. Stop reducing for the moment, wait a couple of months and try again - IF the fatigue has improved. If it hasn't then you probably need to speak to your doctor. If your adrenal glands aren't producing cortisol then you could be ill if you keep trying to force a reduction.

[jinasc]

PMRpro

"It's horribly complicated and I can't explain it correctly and easily. I could have once"..........

You did and it is available by following the link below. This is a very full explanation which we published in the Winter 2015 edition of the Newsletter "You are Not Alone".

It is available for anyone to read or download. In fact any of the information on that site is available for all to read or download.

pmr-gca-northeast.org.uk/as...

I would also add that PMRpro has co-written a booklet called "Living with PMR and GCA". No jargon, just written by patients for patients and heading for its third re-print.

[PMRpro Ambassador in reply to jinasc]

When do I start to get royalties?????????

[jinasc]

When you go into remission forever - where do you find the smileys?

[PMRpro Ambassador in reply to jinasc]

Wink: semicolon, minus, close bracket

Smile: colon, minus, close bracket

Frown: colon, minus, open bracket

[jinasc]

nope don't want to frown have enuff lines already...................

[PMRpro Ambassador in reply to jinasc]

Alright - I should have said sad ...

[Admiral06]

Hi mega, The following link demonstrates that of 150 patients treated for GCA, (mean age 74 plus or minus 7 years) 95% eventually regained adrenal function. The mean recovery time was 14 months.

with a maximum of 51 months. Regrettably, I was unable to find a similar study of PMR patients.

"Recovery of Adrenal Function after Long-Term Glucocorticoid Therapy for Giant Cell Arteritis: A Cohort Study" journals.plos.org/plosone/a...

[Brixhamhampster in reply to Admiral06]

Thank you admiral6 that is a very useful link. I couldn't take all of it in but the discussion at the end was quite useful. I know it didn't equate completely to PMR but it still seemed helpful. I am only ten months into my time with PMR and do seem to have hit a wall at the moment. I have decided not to reduce from 5 to 4 for another week or so to see if it helps. Just so much guesswork most of the time!