Low dose pred effects?

[Cinka]

Hi everyone! I haven't posted for a while but now have a question! I have been tapering pred and now am at 7.5. I have to stay at this level as I am having a synacthen test. I do feel unwell and am wondering if 7.5 is too low after taking pred for 4 years. I do also have an overactive thyroid gland, recently discovered. Any thoughts, experts?!

[SnazzyD]

Hello. I am surprised you are having a Synacthen test at a dose as high as 7.5mg. My endocrinologist wouldn’t do one above 4mg because from there upwards can still suppress the adrenal axis and give an artificially low reading. At around 7mg I felt grim with exhaustion and a vague fluey feeling. I also couldn’t wake in the mornings and needed to go back to substantial naps in the afternoon. It felt like I had too little Pred in my system for my body’s requirements but too much for the body to realise it needed it’s adrenal axis to work. The endocrinologist agreed this can be the case. By the time I got to 5mg I could feel things start to get better.

[Sho-Sho in reply to SnazzyD]

How long did it take you to get from 7.0 to 5.0 - I have been stuck at 6.5 for a year now (diagnosed with GCA nearly 5 years ago). Every time I try & reduce by .5 using the DSDM. I feel awful. Just about coping at 6.5 but desperate to get lower to see if the adrenals might start working.

[SheffieldJane]

Well I am not an Endocrinologist but I predict that your Synacthen Test will show little or no potential to function. 7.5 mgs of Pred is sufficient for your own Adrenal function to switch off. The test is most useful at well under 5 mgs of Pred. I had an abnormal one at 6 mgs and a perfectly normal one at 5 mgs.I have Graves’ disease and have had for 40 years initially it involved thyrotoxicosis and over active function. I was put on Carbimazole and when that didn’t work the function was knocked out with radio iodine. It has laid dormant until PMR 5 years ago when I became a bit aware of it. I am on 125 mics of Thyroxine ( life long) but it is monitored annually. Blood tests normal. It was my first autoimmune disease. An over active thyroid gland will make you feel nervous, on edge, hot, palpitations, trembly, a bit sick, hungry (and lose weight).

Is your GP looking after you or an Endocrinologist?

[Grammy80 in reply to SheffieldJane]

Hope you are doing well...keeping busy. I love reading all these responses so that (hopefully) as I taper I will know that what I'm experiencing is all a pretty normal adjustment journey.👩🏽‍🤝‍👩🏼👩🏾‍🤝‍👩🏾👩🏾‍🤝‍👩🏽👩🏼‍🤝‍👩🏻👩🏻‍🤝‍👩🏻👭👩🏿‍🤝‍👩🏽 Three cheers for the forum 💖

[SheffieldJane in reply to Grammy80]

I enjoyed seeing you in your magic apron.

[Grammy80 in reply to SheffieldJane]

😅😃😄🤣 I'd like to see you in one....💖 It works Jane!!

[piglette]

Why are they giving you a Synacthen test at such a high dose of pred? It is normal to have reduced way below 7.5mg to get a decent result.

[SnazzyD]

I just kept plugging away with slow reduction on a hunch that I was in a dose no-mans-land because I felt ok for the few hours Pred was it it’s peak and bombed after that like I’d used up what I had but the body wasn’t doing anything about it. As I got lower I had intermittent coping and not coping until the better times got longer. At one point I thought I was getting PMR because of how much I ached. It wasn’t until I saw an endocrinologist at 4mg that I got some meaning to my hunch.

[PMRpro Ambassador]

Nothing to add to what Snazzy says - too soon for a reliable synacthen test.

[powerwalk]

DadCue, what do you mean "hydrocortisone as needed"? For an odd time if you dont feel good? How does that work? Thanks

[SnazzyD]

4-zero wasn’t as bad as 8-5mg. By that point the aches and pains were more intermittent and good days were more obvious. However, I did develop crippling Achilles tendinitis and sore tendons in my neck and lower arms. How did I know it wasn’t PMR? Not having had it I could only go on how others describe it. My main reasons were that I didn’t lose function in my muscles and range of movement wasn’t affected. I did though get delayed onset muscle stiffness very easily. Perhaps that was PMR waiting on the wings, perhaps it was long term Pred effects and deconditioning. My muscles only really recovered after I stopped Pred. The other reason I thought it wasn’t PMR was because it didn’t get worse with reduction beyond the withdrawal period. It was just a constant rubbishness.

[powerwalk]

Oh so for an adrenal crisis. Goodness i've been told i have no adrenal function but no emergency instructions or anything. Except to double dose of pred 5mg that im on, if i get an infection. No follow up or anything. Thanks for your reply.

[powerwalk]

No but some if them are more than capable of messing things up. Like my original rheumy!! Thank you for the link.

[tangocharlie]

You can't have a synacthen test until you are on 5 or ideally lower. I know, I've had quite a few as I've had adrenal problems in the past

[powerwalk in reply to tangocharlie]

Tangocharlie, were you told your adrenals would not come back and did they?? Sorry just cant remember.