Endocrinologist?

[Stm252]

Has anyone seen an endocrinologist to either help them with their flares and/or to help get them off their prednisone? My rheum has now referred me over to the endocrinologist. Thoughts?

SM

[Juliauk10]

I saw an endocrinologist when my Cortisol was found to be low - it turned out all was okay so only a one off visit

[Expectthebest]

Hi. I have not taken prednisone in over a decade. Rituxan infusions keep most symptoms in check. Two infusions two weeks apart every 4 months

[Lovingdragonflies]

I see one. I have had severe Neuro issues with long bouts of full body paralysis. I had mass amounts of methyl prednisone due to this. It compromised my pancreas to the point that I now need to take insulin. I see an endocrinologist to manage this. It’s worth mentioning though that diabetes runs in my family and I’ve had actually had an uncle and an die at an early age from diabetes so it’s more likely genetics played a hand in my case. With good management and a good endocrinologist, you can probably get back to normal. The pancreas can actually heal itself. My endocrinologist has given me that hope and I’m still hoping!!!

[Stm252 in reply to Lovingdragonflies]

This is helpful to know!! Thank you.

[RonSton7]

I have done, I'm male and long term predisolone reduced my testosterone to incredibly low amounts. I'm now on testosterone gel, probably permanently. It certainly helped my energy levels, and my mood. I also noticed a reduction in ulcers, but my rhematologist was also concerned that low testosterone levels in men can contribute to osteoporosis, which pred can also contribute too (i had several compound fractures in my spine after 2yrs of daily pred, and a partial collapse of my lower spine. My bone density was lower than it should have been at the end so came off pred) Obviously if you are female this may not be relevant, but pred is hormonal so certainly worth seeing an endocrinologist as long term it can impact you, and everyone is different in how it effects you. It may also rule out other issues that you might be attributing to BD, particularly fatigue related issues.

[Stm252 in reply to RonSton7]

This is super helpful! Thank you for this. Yes on my two DEXA scans the bone density is getting worse And my fatigue is just off the charts. So what you are saying makes total sense. Now I am understanding why I am getting sent to endo. On top of the fact that I cannot get off the pred. Every time I try to titrate lower I flare like crzy. Thanks!

[RonSton7]

No worries, glad it was helpful. You don't mention if you are male or female, but at the very least you should be speaking to your specialist about doing what you can do to prevent your bone density decreasing further.

I only got a dexascan, after the compound fracture and partial spinal collapse. But although the density was low, i was told that it was difficult to say how low due to a lack of comparative data for men in their mid 30's?!

I made the painful mistake of staying on pred far too long, and i'm still convinced my decrease in bone density was related to the pred. At first pred pretty much sorted my BD symptoms, but over time the weight gain and hormonal changes left me so fatigued i was sleeping like 12 to 14hrs a day. Then i got a compound fracture in my spine, and now i have multiple degenerative problems throughout my back. This is giving me more problems now than BD ever did (i struggle to walk, lost most of the feeling in my left hand side of my body due to trappped nerves, severe stenosis and i'm now being told long term pain management is going to be my only option.

I hope i haven't scared you (i'm often told i'm a complicated, extreme example 🤔). But do speak to your specialist, as the bone density issues can cause big problems down the line. I now make sure that i always take a calcium / magnesium / vit d supplement everyday also.

I hope things improve for you,

[Stm252]

Hi there. Sorry I was so delayed in my response. I am a female in my early 40s. So I saw the endo yesterday and she was lovely. She said in the last 6 months based on time 1 and 2 dexa I lost 12 percent. Yikes. I also have hormone issues so this is contributing as well. I think my other diseases (not just the pred) is impacting. She has recommended getting an infusion once yearly.

She and rheum want me to move from pred to hydrocortisone. They have not ever done this eith other patients but are hopeful somehow this could get me off the pred. Any thoughts?