2.25 tapering dose is no fun

[spacevoyager]

I am just writing to vent my frustration with my adrenals and how low I am feeling. I went to my doc to ask for a cortisol test and she said "if your adrenals weren't working you would be dead". She said a test would be no help. I also asked for a Vit D test and she said "all the people in the world have low Vit D. Just take supplements". "What we can do to help is meet with you every time you start a new taper" Really? How does that help? As you folks say, just muddle through it.

I feel teary many times in the day. I feel so fatigued, even after napping. I must do exercises for my knees as prescribed by my physio. But I have to rest between each set so it takes way longer to complete. At least I am doing them.

I suppose these last stages can be the hardest. On the plus side, I have not had any flares so far.

I am taking the taper very slow. I started at 2.5 on Oct 23, 2023. Then 2.25 on Feb. 13. So 4 months for a .25 taper.

[SnazzyD]

Dear oh dear. That’s a bizarre comment about the adrenals. Do they think it’s all or nothing? Or are they such a pedant that if you said they “weren’t working” they thought you meant zero function? A test tells you if things are improving or not but to be honest I could tell my test at 1.5mg was going to be much better than at 4mg just by the reduced horribleness.

A vitamin D test helped me know that any less than 1000iu 5x a week doesn’t do it.

Yes, this stage can be awful and a sting on the tail of an already tough ride that seems to go and on. Your taper is indeed very slow and it would be handy to know with a Synacthen test if it’s your glands that are slow or whether they are not being triggered from ‘up stream” in the brain. The Synacthen test simulates a hormonal shout from the pituitary gland. But what harm can a simple early morning cortisol test do for goodness sake? Can you see someone else?

[spacevoyager in reply to SnazzyD]

Thanks for the feedback. I will make an appointment with another doctor.

[DorsetLady PMRGCAuk volunteer]

No point in getting frustrated with your adrenals…they will stutter for some time…and some days are worse than others… you are doing all you can with a very slow taper.. so hang in there… and the fact that you aren’t flaring is a positive thing.

As for your doctor, get another one who has a bit more idea of adrenals etc… 🤨

[spacevoyager in reply to DorsetLady]

Thanks. I know they stutter but I have been like this for a couple weeks. You are right. I just need to wait it out. I will try to see another doctor.

[DorsetLady PMRGCAuk volunteer in reply to spacevoyager]

.. likely to stutter a bit longer… and yes a more sensible and knowledgeable doctor would help..

[PMRpro Ambassador]

I fear she is wrong - 2mg is enough to keep you going if you don't have any stress events. Imperial College London did a study and concluded that the usual assumption of 7-8mg pred equivalent was far too generous and 2-3mg would do the job fine. But it is the lack of RESERVES that is the problem and what you need to know. And whether there is ANY function so it is safe for you to continue the taper.

The entire world is NOT Vit D deficient - but there are things that make you more deficient and so need more supplementation.

The level of ignorance is astounding ... I wouldn't want to hold hands with HER!

[spacevoyager in reply to PMRpro]

Oh wow. I did not know that about the 2 mg dose. So that means it will get harder to taper, not easier. I have finally decided to always ask for another doctor. I wonder what her problem is! Holding hands with her does seem out of the question. Always makes me feel worse when I see her.

[PMRpro Ambassador in reply to spacevoyager]

You are already feeling the effects of low corticosteroids levels - whatever she thinks. But the 2mg is enough to keep the body running. Just. It is why she SHOULD be looking to see how near the baseline you are. Do ask for a different doctor - hope someone else is a bit more clued up.