I'm 0ff pred ,but restarted on hydrocortisone and fludrocortisone for Addisons.

[whitleybayfc]

As I've said in title I've restarted hydrocortisone and fludro ,i must admit I don't feel any better fatigue wise and muscle weakness continues .I'm presuming these are cortiscosteroids . I'm fed up with feeling crap and been overtook by 70 yrs olds while out for a stroll. I've got the lot pmr gca,type1 diabetic ,Addison's disease and aps Hughes syndrome.

[Celtic PMRGCAuk volunteer]

whitleybayfc, yes hydrocortisone is a steroid, and it is recommended that if patients experience adrenal insufficiency/Addison's disease at 5mg and below, they can be switched from Prednisolone to hydrocortisone.

I'm not surprised you're feeling fed up with so much going on. You haven't said how long you have been on Hydrocortisone but if it is only a short time then perhaps it will take a little longer to prove successful. Of course, if it doesn't improve then do go back to your consultant. My best wishes.

[whitleybayfc in reply to Celtic]

Hi Celtic ,I was on hydro and fludro for 8 years before pmr and gca appeared.

[tangocharlie in reply to Celtic]

I've just switched from pred to 20 mg HC. I was feeling unwell, which docs put down to adrenal deficiency as I'd got to 3.5/3 preds and I think now feel a little better after a week. I'm due another synacthen test in 3 weeks which will tell if the adrenal glands are still capable of responding, and I guess they will also check morning cortisol levels. If things are progressing hopefully I can reduce the dose the endocrinologist says. I was so happy to get below the 5 pred level but it wasn't to be, and my celebrations (I posted 'There is light at the end of the tunnel') were premature. I'll keep you posted. I would recommend anyone who is on long term preds and stuck around 5 and just seeing a GP to ask for a referral to a rheumatologist and/or endocrinologist to get over the hurdle. Although having said that, the first rheumy I saw told me to just get off the preds no matter what and take gabapentin for the pain and if I'd done that I'd have died. Good job the experts on here recommended another rheumy.

[PMRpro Ambassador in reply to tangocharlie]

I have to say - I am flabbergasted at the cavalier attitude of some rheumatologists when telling patients to get off pred when they have been on it long term! But I have also heard of endocrinologists being quite sarcastic to patients in the same position when they have asked for a referral to them.

Really a case of buyer beware I think!

[tangocharlie in reply to PMRpro]

Yes the endo was slightly dismissive when I was first referred, but then as he pointed out there was nothing he could do for me until I got down to 5mg preds. Now I am at that point it will be very useful to know why I can't break that barrier: is it the PMR flaring, sluggish/dead adrenals or something else. He told me it is easier to interpret synacthen tests etc on hydrocortisone rather than pred. And if and when the adrenals do perk up it is easier to stop HC than preds. I'm pretty sure the PMR itslef has gone as I don't have any hip or leg pain. The sholders hurt a bit but that's due to bursitis.

It is taking a lot of research and effort on my part (and all thanks to this great forum) to liaise btween GP, rheumy and endo and understand what is going on. It is now nearly 2 years since I first asked my GP to refer me to a rheumy and yet I'm still in the same position of being on the equivalent of 5g of pred, andhad a horrendous trial of methotrexate and had to go back up to 7.5 pred. And I've put on over 3 stone in 4.5 years, now weigh 17 stone and have a grotesque overhanging belly, chipmunk moon face and wasted arms and legs. I feel like humpty dumpty or a snowman with twigs for arms. I just want this nightmare to end.

[PMRpro Ambassador in reply to tangocharlie]

Cut the carbs - drastically. It really does work for almost everyone!

[tangocharlie in reply to PMRpro]

I'll give it a go but I'm cynical any diet ever works in that your body compensates and puts it all back again! I did a low carb diet 7 years ago and lost loads of weight but despite trying to eat sensibly after the diet ended up putting nearly all of it back on. Then the PMR and steroids started 5 years ago and I added another 2.5 stones.

[tangocharlie in reply to tangocharlie]

PS Two synacthen tests in Jan and March both show adrenals unresponsive but still awaiting appointment with endo to discuss. Am now on 20 mg hydorcortisone (HC) daily and very unstable from one day to the next, often feeling very ill and having to double the dose of HC.