Adrenal Glands and PMR/GCA

[Boozsa]

Is there any connection at all between low cortisol or adrenal gland malfunction and PMR/GCA?

[PMRpro Ambassador]

Not that is known. There was a suggestion years ago that that might be the case and some patients are found to have lower levels but it isn't a general finding - like any of the suggested causes of PMR or GCA. Once you are on pred your cortisol level will be low because of the feedback system governing production of cortisol so levels measured then are misleading.

[Boozsa in reply to PMRpro]

I’m doing so much better! I just was wondering about this because I’ve had some random symptoms that have improved as well. I just wonder if low cortisol plays any role in my symptoms. I have thyroid problems and that is hormone related, then the hysterectomy 15 years ago and no hormone replacement therapy so no hormone production there. Just a thought that maybe due to my past history of hormone related problems that maybe it is playing some part in this. Regardless, prednisone relieves all my symptoms and quickly and it’s the only drug to EVER make a difference in any of this for me so there has to be a connection between my symptoms and what prednisone does to the body. I guess I’ll see what the rheumatologist has to say next month.

[PMRpro Ambassador in reply to Boozsa]

What sort of random symptoms?

[Boozsa in reply to PMRpro]

Some gastronomic problems like really bad nausea in the morning, this white foamy stuff I would cough up is gone and some mid back/ flank pain. I’ve had a feeling of swelling in the bladder/ pelvic area and couldn’t empty my bladder or bowls completely. I never had burning like with a kidney or bladder infection.

[PMRpro Ambassador in reply to Boozsa]

Sounds like something inflammatory - was it never investigated?

[Boozsa in reply to PMRpro]

In the same way they always investigate it, with inflammatory labs. Twice I had to go to ER to get catheterized to empty my bladder fully and once they treated me with a steroid shot and tordol after. I got better but only temporarily. I’ve always thought inflammation I just wish I could understand why my inflammation markers are normal yet I have all these inflammatory symptoms.I thought maybe it could have something to do with my hormone issues and early menapause or low cortisol production. I guess wanting to know the why is my downfall. I’m just paranoid they will take me off steroids again and I wish I knew how to make the docs understand just how drastic my improvement is, I do not want to go back to the way things have been especially since August. For now I’m grateful for the way I feel today

[PMRpro Ambassador in reply to Boozsa]

Up to about 20% of PMR/GCA patients never have markers that go out of the normal range. That doesn't mean they aren't abnormal for you - if ESR runs at 16-18 for me that is way above MY personal normal of low single figures.

I think we have said - keep a detailed diary and be firm with doctors about the difference pred makes. One day you will meet a doctor who treats the patient, not the lab results!

[Boozsa in reply to PMRpro]

I was just writing in my health journal

I think I’m on my way to better treatment with my new doc, I mean she put me on prednisone without much hesitation. I just get nervous because I’ve been “burned” so many times. Thank you again for all your knowledge and to everyone in this community. It’s been monumental in helping me sort all this out.

[Boozsa in reply to PMRpro]

After my urinary/bowel swelling(?)feeling got better, I woke up and I think my bladder has prolapsed. Any idea why? I'm afraid to call my doctor and have them tell me it's the Prednisone and then take me off it. I haven't had any pain or other symptoms in 3 days. My cranial symptoms vanished I can't go back to all that but my bladder has definitely "fallen" / I can feel it and it's hard (cringe, sorry)

[PMRpro Ambassador in reply to Boozsa]

Doctor time - whatever it is needs checking out.