currently reducing to 4mgs, does anyone know where I can get information on adrenal gland recovery and what to expect, thanks.

[poppysmam]

[Celtic PMRGCAuk volunteer]

We are led to believe that our adrenal glands usually start recovering and producing their normal supply of natural steroid when we are on somewhere between 5 and 7.5mg of artificial steroids but it is a slow process which is why we need to reduce more slowly at these lower doses otherwise there will be a shortfall of steroids in our bodies. If you reduce too quickly and in too large amounts you run the risk of withdrawal symptoms and hence increased pain.

[masonc3]

This may be more "medical" than you care to read, but look at this:

Recovery of Adrenal Function after Long-Term Glucocorticoid Therapy for Giant Cell Arteritis: A Cohort Study

One thing to know is that it takes time. I am at 4 1/2 years of GCA, taking 5 1/2 mgs prednisone and

probably will be at 5 mg forever. "Forever" at age 92, maybe 14 years? 5 mg has minimal side-effect.

[jinasc in reply to masonc3]

You can ask for an Adrenal Function Test. Google Adrenal Test +UK and read up on it.

I had one 6 months after stopping pred.

[suzieh in reply to jinasc]

Very useful to know! I shall check it out. Have just reduced from 10 - 9.5mg successfully so feeling good and positive. Hope you are well too - your advice is always good. Am missing some of the other "regulars" - maybe the new format is difficult for them to access?

[poppysmam]

Thank you all, I have learnt more about PMR, on this sight than I ever have from my GP or Rheumatologist, they never seem to have the time or inclination to offer any information, my GP told me there is a nation wide shortage of Rheumatologists, I rarely get to see the same one, my appointments are always at least 3 months late and when I do get one I am sitting at least an hour waiting over my appointment time.

[masonc3 in reply to poppysmam]

If you have PMR. If you are a woman. If you are in the UK.

You MUST visit pmrandgca.forumup.co.uk/ and chat with them.

[espolj in reply to poppysmam]

I agree with you on the shortage of Rheumatologists. I have the same problem. My Rheumatologist is so booked up I have to wait 3 months or more for a followup or otherwise see the NP.

[jinasc]

poppysmam and suzieH

Masonc3 has given you a link to another forum and it would be good if you took his advice and had a visit. It is a very friendly forum and has a wealth of information. It is not structured like either this forum or Patients Expereince, it is more informal. It can look a bit daunting, but take your time and the post whenever you want to. Even in the middle of the night you will probably get an answer as members cross many times zones and some live outside the UK. Many are 'old' hands at dealing with PMR & GCA and all its trials and tribulations. Most of them have got the t-shirt, the DVD et al. Some are in Club Zero and still help out.

[suzieh in reply to jinasc]

Thank you - will have a look now

[Green_girl]

I'm with a very good nutritionist - and she has been trying to re-balance my adrenals (I was so poorly when I first saw her she didn't need to do the adrenal test, but does do this if needed - it costs about £70 - £90). Basically the idea is not to stimulate the adrenal response (fight & flight), so cutting out processed sugar and all caffeine is good. I am also having talking counselling to help to look at my responses to situations and to change these so that they do not affect me so much. This should help me to keep my adrenals in good order in future. Have to say I am feeling so much better in myself it's great.