PMRGCAuk
7,094 members11,303 posts

Low adrenal function at 6.5

For the pro. Finally talked my endocrinologist into doing a cortisol test at 6.5. I have been absolutely exhausted and had to exaggerate a little. He wanted to wait until 5. So as you are usually right at 6.5 very little adrenal function. Haven’t talk to him yet but thyroid also came out hypo. I will Stop thinking I am just lazy. No wonder when I get a shot of Cortizone in the knee that needs replacing I feel terrific. Haven’t talk to my New Jersey rheumatologist either. I would guess that a reduction is not in order. It now gets confusing because I am still taking a shot of Actemra once a week.

7 Replies
oldestnewest

I'm totally exhausted at 6 mg pred. Soooo wiped out I can barely even get into bed, too exhausted to turn out the light. Does it get better eventually? When? Seems like the lower I get, the worse it will be...seems that I've read it can take months? How long can I expect, I wonder? I'm in my 16th month of pmr...I'm using the slow method to reduce. Since pred seems to last 4-6 years for most people, I've got a ways to go...hope we both perk up!

Reply

Hmmm - sounds like now you have to taper off the Actemra and accept the pred dose you need! Or switch to hydrocortisone - which is the usual steroid used but it doesn't suit everyone.

Reply

I’m interested why you said to taper off Actemra because I no longer feel that horrible feeling as if I needed to fill up again the day before the shot. I wonder if I need to as well?

Reply

In Nap's case she will have to stay on the dose of steroid she needs to replace the lack of cortisol. But you can't tell if it is the pred that is managing the PMR symptoms. Maybe the Actemra is - but if some is due to the pred it makes sense to taper off the Actemra rather than just stopping it jusst in case. Some people don't get totally off pred with it anyway, just to a much much lower dose.

Reply

Sunday morning 9 AM just heard from my Endochronologist. He is of the opinion that I need to stay at 6.5 prednisone. He does not want to change the type of steroid I’m on. If adrenals are functioning slightly at this level he did not want to rock the boat. He felt tapering the Actemra is the way to go Especially if the GCA is being managed at 6.5. I will not know that until I taper. He is of the opinion that I most likely will never wake up the adrenals after 6 1/2 years of high doses of steroids. This is not the worst place to be in life. It is time I started to concentrate on regaining energy. My biggest problem has always been muscle fatigue. I will live with that and try to get stronger. It’s scary thinking of weaning off Actemra. The drug has been very good to me. I will continue taking my tramadol for pain which I believe is arthritis. If it was PMR the tramadol would not be helping me. I will soon be able to have my eye surgery and my new knee. I leave you for the moment as a happy person.

Reply

I'm pleased to hear you have a sensible endo. If you are on pred. well adjusted and it works - why mess with it? Mind you - if it were me I'd prefer 7mg, so much easier to measure!!!!

Reply

Me too. I intended to raise it. I’m not splitting pills the rest of my life.

1 like
Reply

You may also like...