ADRENAL INSUFFICIENCY

[hwigston]

Recently had a short synacthen test which showed adrenal insufficiency. Today Encronologist told me that she is recommending to my Rheumatologist that I take hydrocortisol instead of prednisolone. Does anyone else take this alternative medicine please? My only concern is if I get a flare.

[Hidden]

Hi hwigston,

I don't have any personal experience but I know that Mick on this forum takes both prednisolone and hydrocortisone as he has Addisons as well as PMR/ GCA.

This may well be past my understanding but if the adrenal insufficiency is secondary to long term prednisolone and not a primary condition like Addisons then why rock the boat and change the type of steroid you use.

I know of patients who are on a maintenance dose of prednisolone for life due to steroid induced adrenal insufficiency but I have never heard of anyone who has been changed to hydrocortisone. It may well be that I just don't get it, hopefully someone like PMR pro will be along to give you a more technical answer.

Best wishes

Keyes

[hwigston]

Hi Keyes. According to Doctor I will only take hydrocortisone and not pred. I asked why the change and she said it would make my adrenals wake up quicker. I personally can't see the point, but had to take the consultant's advice.

[jinasc]

Hi wigston,

I read your profile and see you have GCA.

What dose of pred are you now on?

I am amazed that you have been told to stop pred and take Hydrocortisone. I can understand both together (as per mickT) but the pred makes the adrenal glands go to sleep and once you get down to 7.5mg and below they start to wake up.

Currently the pred is the only thing standing between you and the loss of your sight. You already have lost the sight in one eye due to GCA you must not run the risk of losing the other eye.

I would be asking a whole load of questions from both the Rheumy and the Endocronologist before I agreed to drop the pred at all.

Just to let you know, I had GCA (now in remission). I also had a short synacthen test once I had been off pred for nearly 8 months to see if they were up to speed - they were.

The National Organisation PMR GCAuk, has a Medical Advisory Committee, it might be worth you contacting them on their helpline and asking the question. They just might be able to help you clarify the situation. In the meantime sit tight.

I have looked back and seen you are currently on 8mg. When you say you are unable to get below 8mg, Can you tell me the reason?

There are currently two reduction plans on offer - devised by patients for patients and they work for most of the people who have tried them, including me. If you have been trying a slow reduction plan, the and it has not worked, then surely the Rheumy should be thinking of a steroid sparing agent such as Leufludomide or Anzathropine?

I am completely baffled by both your Rheumy and the Endocronologist.

[hwigston]

Hi Sambucca. I am currently on 7 reducing to 6 mg. I agree with you about stopping Prednisolone. I questioned Consultant about it and she was quite adamant that I take only Hydrocortisone. I am not sure why my Rheumy referred me to Encronologist, unless he thought I was not reducing fast enough. However I see him on the 3 July so yes I will have a lot of questions for him. I have been following PMRpros reduction plan and it has been working, at least for me, but obviously not fast enough for Rheumy. I couldn't reduce in April/May because I was recovering from fractured pelvis, but I am now back on track again. Many thanks for all your info. I will certainly give the Medical Advisory Committee a ring.

[PMRpro Ambassador]

My granddaughter needs both - pred to avoid asthma flares and hydrocortisone if she has another infection because her adrenals don't work. Nothing would induce me to"stop" pred altogether in your situation without at least a second opinion. Why are they so terrified of pred? I'd rather run the pred risks than risk a return of GCA and possible blindness.

Most of the docs I have come across agree that once you are down to 7mg the concerns fade.

I agree with the others.

[hwigston in reply to PMRpro]

I had very little sleep last night worrying about the possible consequences, especially as I have already lost the sight in my left eye. I am certainly not going to stop the pred. I can only assume my rheumy thinks I am not reducing fast enough, but as I explained to him I reduce as I feel my body can cope with the reduction, and using your programme, which he considered far too slow. I have had 3 flares, my last Sept 2013. I am now reducing to 6 mg. I didn't reduce April/May because I fractured my pelvis, and considered I didn't want the risk of a flare. I see my Rheumy next week when I will go armed with lots of questions.