Adrenal insufficiency : Hi everyone It’s been a... - PMRGCAuk

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Adrenal insufficiency

camerashy
camerashy

Hi everyone

It’s been a couple of years since I was last on here and although I have manages to get down to 1 mg of predesolone for myGCAand GCA I had a relapse last year and was back up to10 mg and now at 3mg although head pain tongue chronic tiredness and throat pain still bothering me

I have an appointment with an endocrinologist next Monday to to see if I may be suffering from

adrenal insufficiency caused by the preds which is a possibility I will keep you posted

Regards to all

15 Replies
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Hello. It must be frustrating to be back again. Is there a supervising doctor? However, I am troubled by a few things not least that your journey has been unconventional with a starting dose that was modest even for just PMR let alone GCA, unless I’ve misunderstood. I am very worried that you are getting GCA type symptoms so I hope there is a competent doc you can take advice from because adrenal insufficiency doesn’t do that. Fatigue yes but the other stuff no. For this situation an Endocrinologist isn’t your doc and I suspect you’re going to have to go up again anyway.

camerashy
camerashy in reply to SnazzyD

Hi SnazzyD

I am seeing a rheumatologist and she is fairly competent I think she just wants to cover all bases

All my blood tests come back as normal which is good and bad. bad because there must be something that is causing the symptoms I am getting I just feel as thought I am on a treadmill and quite frankly just want to go to sleep I appreciate your response and will post any developments

Thankyou for taking the time to respond

X

PMRpro
PMRproAmbassador in reply to camerashy

Symptoms are always more significant than blood markers, they are a supporting act. I would want someone more than "fairly" competent and someone who treated me not the numbers.

Let us know how you get on! X

Thanks Sheffield Jane I will

Hope you are keeping well x

How discouraging for you. We always hope when we get to these lower doses that we will be feeling better. Please keep in touch. 💐

I too am down to 1 mg pred a day but my fatigue is incredible, I work full time but all I want to do is sleep. My sed rate is 74 and the doctor keeps suggesting I go back up on the prednisone but I do not want to. I am now trying cbd oil to help reduce the inflammation. Good luck with your doctor.

camerashy
camerashy in reply to jevuki

Thankyou Jevuki

When rereading my post it should have read 3 mg. that’s another symptom fuddled brain🥴

What strength cbd oil are you trying?

I bought 1000mg I take it twice a day and it takes the edge off about 3 hours or so

camerashy
camerashy in reply to jevuki

Hope it continues working for you although it’s not cheap is it x

No $85 us dollars for a bottle that will last about a month but I think its better than the pharma drugs that cause other damage

It obviously makes you feel deflated having a step back but at least your Rheumy is covering all the bases by sending you to Endocrinology as well , so take that as a positive.

More tests , more knowledge about what is going on .

It will help you get closer to finding the right measures to take to help with the Fatigue and get you back to where you were and beyond.

Good luck and let us know what happens .

camerashy
camerashy in reply to Blearyeyed

Thank you for taking the time to respond x

I haven’t posted for awhile but I thought I would let you know that It is confirmed I have adrenal insufficiency and have been taken off predisolone and put on hydrocortisone

The consultant I see about my liver hepatitis was non too pleased as he says that the predisolone is the only thing that is stopping the hepatitis flaring up again. Blood test showed one raised markers. My biggest hurdle is still

chronic fatigue but my ruemy says I have so many contributory factors they are all playing a part. Just been diagnosed with arthritis in both shoulders so when one symptom subsides another one rears up

I do hope all of you are keeping safe

and have missed all your contributions to this site

PMRpro
PMRproAmbassador in reply to camerashy

There is no need for you to switch to HC - from the endo point of view it is ideal but they have to think of the other stuff too. One lady on the forum had the same experience but the HC just didn't work so she was switched back to pred and it has been fine. They need to talk to one another if you can't ne assertive with the endo.

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