Adrenal Tumor and Troublesome Prednisone Tapering

[Blurry62]

I was diagnosed with GCA Feb.2018

My relationship with prednisone has been rocky and unpleasant-Like most of you. I am currently tapering again; 4.25/4.0

I have taken a month to get from 4.5 to 4.25 and now working on the DSNS to 4.0

I wonder if anyone else experiences transient head pains; a sharp poke here or there lasting 30 minutes or so.

Sometimes my ear feels like its being pinched on the inside--that goes away. Other tomes, my face aches vertically along the front of the ear--that goes away. I'd like a calm quiet face. No discomfort.

I'm forever trying to solve the BIG question: Is this a flare?

I also want to know if anyone has developed a non-hereditary tumor on an adrenal gland while on prednisone. The doctors were quite concerned and searched head to toe for cancer, but didn't find any. Since we know how highly impacted adrenal glands are by prednisone, I wonder if I developed the tumor because of the steroids. The tumor was removed last year. The tumor was pheochromocytoma that --they told me--was removed at the optimal time because it was in the process of transitioning to a cancerous tumor rather than a benign one. No one in my family has ever had adrenal tumors.

Appreciate your thoughts. Thank you. I'd like to change my name from Blurry62 to Tired62

Hugs all round

[Blurry62]

Important note: The entire adrenal gland was removed.

[Sophiestree]

Do you need any additional treatment since the removal. Strange to read you had this. I had a friend who had the same over 30 years ago who seemed to be ok after. I have LVV and have struggled to get to 7.5mg from 8mg since Dec. I often get stabbing pains in my head or vice like sensations, can't scratch my temples etc etc, but weirdly not all the time so confused by the whole thing. But for that reason I'm not sure reducing is the way to go.

[Blurry62 in reply to Sophiestree]

Thank you for responding to my post. I haven't had any additional treatment after the adrenalectomy. They don't think I need any. I don't think so either. I am dealing with tapering withdrawal. (I think) What is LVV ? Have you talked to your doctor about your "come and go" pain? Yes, confused is where I'm at, too. I think my rheumy is confused too! He says that that I am atypical for his other GCA patients in that I'm so overly sensitive to pred changes. It's true. I 'm sensitive to everything though.

[Sophiestree in reply to Blurry62]

LVV is similar to GCA but my inflammation is also in my Aorta

[hurryupharry]

two years ago I developed cancer. I had a lot of scans. It seemed that that I developed a small tumour on my right adrenal gland. each scan records the tumour growing size.

I really believe that my cancer was caused by my inability to fight hpv because of the effect of pred. I also think that the adenoma started because of the same source.

I am hoping that the next scan I have I persuade the surgeon to remove it. As it doesn’t seem to have any beneficial effects.

[Blurry62 in reply to hurryupharry]

It was my right adrenal also. They ran blood tests to detect particular hormones identifying the type of tumor it was, but there weren't any identifying hormones. They called it a silent pheochromocytoma, and all four of my various doctors said, "If were me-I would have the whole adrenal gland removed." The oncology surgeon said, "Removing the adrenal gland is the safest thing to do."

I'm glad it's gone.

Thank you for responding. It doesn't look like there are many people on this site who've had adrenal tumors. I do believe mine was due to the prednisone.

[PMRpro Ambassador in reply to Blurry62]

How would pred cause a tumour to form?

[Blurry62 in reply to PMRpro]

I am working on finding this out. I'm trying to find out if it's possible. The only thing I have found out for sure is that prednisone easily enters through the cell membrane and affects many of the cells functions. This was on the ncbi.nim.nih.gov website. I'm trying to find someone who knows.

When I developed the tumor they said it was very rare....I reason that because prednisone alters the function/cells of the adrenals and pituitary gland--it's very possible and likely.

When I find out more, I'll come back on here and report. What are the odds of having two rare conditions? Dunno

[Cofab2 in reply to Blurry62]

Hi, I have a non malignant tumor on my adrenal gland. This was discovered on a X-ray for chest pain, in 2005. This also was before PMR diagnosis on 2015. It’s too close to aorta for removal, but it’s encapsulated and supposedly not a danger. I’ve questioned if it’s related to the PMR, but told no. I cannot get below 5mg daily without having a flare. Rheumatologist says will probably be on that dose for rest of my life. (I am in US)

[Blurry62 in reply to Cofab2]

Did the tumor occur after prednisone?

[PMRpro Ambassador in reply to Blurry62]

The tumour was found 2005, PMR diagnosed 2015 - so you would think not.

[Blurry62 in reply to PMRpro]

yes

[hurryupharry]

my cancer was a very rare and specific male cancer. I seem to be stuck in a circular route only seeing the specialist urologist who did the surgery. I don’t think any tests have been done on the tumour. He just referred to it as an adenoma.

Just by, unfortunate ,chance i was whipped into hospital yesterday with a suspect pancreas or gallbladder. I met one of those angels in the nhs, the doctor in the emgency dept, she arranged for a ct scan and lots of blood tests. Whereas I was lead to believe it would only be an ultra sound scan. It seems that there is no trace of cancer, and the current problem is my gallbladder, which is going to be removed. Painful but not too serious. If I do get the chance I will definitely get rid of the adenoma. Good luck.

[PMRpro Ambassador in reply to hurryupharry]

If you have to have anything, an adenoma is a good choice as they are benign (non-cancerous)!

[hurryupharry in reply to PMRpro]

Thank you Pro. I remember having the discussion with you a couple of years ago. I think at that time I had read that they can interfere with the production of cortisol. I joked that maybe if I was lucky it would trigger extra production of cortisol. No such luck. The emergency dr has requested the previous scans and notes so they can check if it is benign.