Suffering severely. Cortisol too low.

[Leeleep]

I posted last around three months ago and asked about members who might be taking supplements to help restore cortisol levels. I never did see a functional MD. I have gotten much worse. However, I had a crown replaced and oral surgery to remove a molar. I was given instructions from rheumatologist to be off the Actemra for a number of weeks. Her associate said that was not the case and I did not need to be off but the damage is done now.

I’m in pain and fatigue all the time. Also fight headaches constantly.

I’m staying on 7.5 prednisone and have taken my Actemra last week and this week. So I now have to wait a number of weeks for the Actemra to start working again, but I think she should be raising my prednisone. I hate the idea of it but I’m getting desperate because I’m so

I’ll. I feel like I need to go up to 15 mgs prednisone to get relief. She just cancelled my appointment because she has to leave town and I won’t see her till the 21st. Communication between the office is not good but she is the fifth rheumatologist I have used in the year since I’ve been diagnosed and

the best. Actually I’m now with the associate.

Any input from some seasoned folks would be most appreciated. 💜

[PMRpro Ambassador]

I'm sorry - I am confused. What has low cortisol got to do with you needing to be on 15mg of pred? 7.5mg pred should be adequate to cover for low natural cortisol levels.

If you need 15mg then it is because you were no longer on Actemra and the PMR/GCA has flared - but that is something that needs to be decided by a doctor. Whether it is your rheumatologist, the associate or your PCP is probably immaterial. If your rheumatologist is out of town then she must have someone providing emergency cover for such eventualities.

[PMR2011 in reply to PMRpro]

Hi Leleep,

If it is a flare, which it does sound more like, then it should be treated with prednisone until the Actemra kicks in again. Once that happens you should be able to taper the Pred back fairly quickly. PMRpro is correct, a rheumatologist (preferably one familiar with Actemra) needs to sort it out. Sounds like the next round of treatment guidelines will need to include Actemra and how to manage that!

Let us know how it turns out.

[Leeleep in reply to PMR2011]

Thank you.

[Leeleep in reply to PMRpro]

Low cortisol levels do cause this array of symptoms.

[PMRpro Ambassador in reply to Leeleep]

Very possibly - but you are taking 7.5mg which is the usual replacement dose of pred for adrenal insufficiency so that is far less likely to be the cause of your symptoms. 15mg is far too much for that.

The fact you have been off Actemra means you should probably have been on a higher dose of pred for that and the symptoms are withdrawal or the PMR/GCA flaring - but the forum isn't the place to get medical advice of this sort. You need a doctor. Particularly since you have decided it is adrenal insufficiency - that definitely needs a doctor's input.

[Leeleep in reply to PMRpro]

It’s the associate and I asked to speak to her but she did not call me.

[Leeleep in reply to PMRpro]

Primary care wants no part of this. Seems to be typical here in the states. Associate has not called back.

[DorsetLady PMRGCAuk volunteer]

Hi,

Can’t comment on the Actemera side of things, but most recommend increasing your dose by 5mg if you are having a flare, or something similar. So why don’t you try that firstly, and see if it helps. If it does, then after a week or two ar 12.5mg you could drop back down to 10mg, and then maybe back to 7.5mg when your next Actemera shot is due.

[Leeleep in reply to DorsetLady]

Thank you. I take Actemra weekly now but once you stop it for a number of weeks it takes 5 or 6 weeks to kick in again.😞got around a month to go for it to get to a good level.

[HeronNS]

i wonder what the oral surgeon would have said if involved in the decision whether or not to discontinue a necessary medication for pre-existing condition?