Endocrinologist wants me to taper faster

[sferios]

Hi everyone,

I just had my first appointment with an endo, and she agrees with my two rheumies in that I do *not* have PMR.

When I described my intermittent muscle aches and tenderness to her (thighs and shoulders), she insisted this was the result of being on pred for so long. She said it was steroid myopathy.

Although she said steroid myopathy doesn't normally produce pain, it can because it damages muscle fibers, and then activity can cause aches and tenderness.

She was very insistent that what I am currently experiencing is being caused by the pred, not autoimmune activity.

I also got my baseline morning cortisol, ACTH and DHEA tested, and they were all in the normal range. So she says my adrenals have already started coming back on line.

And as such, she wants me to taper much faster than advocated here. I'm a little nervous about this, and I'm thinking of splitting the difference.

She wants me to start tomorrow on 5 mg (I'm currently on 7), and then drop to 2.5 in a month.

This is way faster than what is advocated here, but if I don't have PMR (according to my endo), and if the vaccine autoimmune effect (whatever that was) has dissipated, then she says this is the best thing for me. She has prescribed me an emergency injection kit in case I need it in an emergency, but thinks my muscle aches should get better as I go lower.

This forum has been my primary source of information, and also my sole source of support, and part of me still thinks I might have PMR, and that my symptoms will come raging back if I taper too fast.

But I have three professionals telling me I don't have PMR. And also, when I did a fast taper last time (from 25 to 5 mg in three months) nothing happened except I got extreme adrenal insufficiency symptoms when I hit 5 mg, causing me to back up high on the pred, which then caused me extreme mental and psychological symptoms.

I don't know what is in a label anyway. Or why it even matters. PMR? No PMR? I had something that caused me debilitating proximal muscle pain. And I know it could come back.

And so given all this crazy and changing (lack of) diagnoses, I think I'm going to split the difference and, out of caution, only drop to 6 mg tomorrow (instead of 5), and assess from there.

Endo says muscle aches and tenderness should get better as I go lower on the pred.

If PR-type pain comes back, I will call my rheumy, make a post about it here, and figure out what to do at that point.

If two weeks at 6 mg is fine, I'll go to 5 mg.

I expect you're going to tell me that 2 mg a month is too fast, and that I am risking a flare. But at this point, with three professionals all telling me the same thing, and with the pred definitely causing me all sorts of problems, both physical (pre-diabetes, insomnia, etc) and mental (emotional, cognitive), I'm going to give it a try.

[PMRpro Ambassador]

If they are confident the adrenal function is fine - we can't argue. Their view on PMR versus steroid myopathy is a tad strange - the vast majority of us have been on pred a lot longer than you without developing steroid myopathy, Though it CAN develop quite quickly - methyl pred did it for me in a few months but it was clear muscle wasting, not pain. But the only way you find out is to try.

[sferios in reply to PMRpro]

Yeah I hear what you are saying. I have been confused about what the aches have meant for a long time.

What I can say is that they have neither increased or decreased over the last 2-3 months despite being on a range of pred doses between 20 mg and 7 mg. In other words, intermittent tenderness and aches in thighs and shoulders (mild but annoying) that has not changed no matter what dose of pred I've been on at the time.

And definitely muscle wasting. I can see it in my thighs. I was a runner before the vaccine. Now my thighs are very thin and it's hard to walk a mile.

Endo thinks this is myopathy, and the aches are from over-doing it (I still try to walk every day).

Could she be wrong? Maybe. But I don't have stiffness (never have), and the aches are never there in the morning.

This has been so confusing for me, but I really feel I need to give this a try. If it doesn't work, and clear PMR-style pain comes, at least I will know.

[PMRpro Ambassador in reply to sferios]

I agree - I don't think you have mentioned the muscle wasting before. but in that case, steroid myopathy is a possibility. You have to try - good luck. It probably won't be comfortable - so don't panic.

[SnazzyD]

I had steroid myopathy which developed quickly in the first year of high doses for GCA only and it didn’t hurt me. Perhaps it hurts others. I suffered muscle pain very readily if I used them once I got under 10mg as well as the low adrenal vague achiness. I have spent the last 3 years trying to build up the muscle stamina to go to a gym without getting horrendous muscle pain 2 days later. We are all different but I would say, don’t underestimate the effect on the muscles this journey has. I say journey and not Pred because I don’t think it is the whole story.

I never quite understand what doctors mean by pain being caused by Pred. Do they mean long term effects or the Pred right now even when it is a new issue that wasn’t present at higher doses.

I guess you need to carry out the experiment and try to remain objective. Occasionally I did push back and say I was doing my own reduction plan because theirs was too fast to be able to function. The Endo’s were far too optimistic even before I had a decent Synacthen test result. It isn’t nice position to defend one’s differing position based on a hunch or the opinion of a bunch of invisible people.

[Bcol]

I guess at this point you probably have to go with the professionals point of view and fingers crossed they are correct. Good luck with this journey, remember we will still be here and please keep us informed with how things go.

[Zebedee44]

Well it seems you have the “advance to GO” monopoly card after the bumpy ride you have had. Your PMR? a has taken a very different route to most of us and I really hope the professionals you have seen are right. I’m guessing that if your adrenal glands are functioning ok you will manage to taper the pred dose much more easily and quickly without adverse effect and hopefully your thigh and shoulder aches will go.

I hope you or one of your doctors has recorded all the details of your experience for a scientific paper on post vaccine Polymyalgia. There maybe other people who have experienced the same symptoms. It’s good that you have shared your whirlwind journey with us, and I wish you the very best as you return to good health. Do please keep us in the loop.

[sferios in reply to Zebedee44]

Thank you. I have my fingers crossed. I'm tentatively optimistic. But this could all go south quickly if they are wrong.

[Exflex]

Instead of asking, I looked up the reason for glucocorticoid muscle myopathy. Apparently it’s due to down-regulation of protein synthesis, mentioned in this:

emedicine.medscape.com/arti...