So prednisone then. I need it. Not only to function, to walk, even jog occasionally. I need it to survive.
Adrenal insufficiency means that your body doesn’t have the ability to produce enough cortisol to sustain life. Or it means that in an emergency situation, or an extremely stressful situation, your body will not be able to produce the burst of cortisol that normal people do, to help you get through the situation. Stressful situations could be a severe illness, such as a virus. Or an injury, maybe a car accident. Or when you need surgery.
Long term use of prednisone has given me a level of adrenal insufficiency. I believe it to be relatively minor, but I need to investigate further.
Something like surgery can be planned for, but the other situations cannot be. So anyone with adrenal insufficiency should wear a medic alert bracelet, or carry a card, so that in a medical emergency, if you are unable to speak, medical staff will know that you need steroid cover.
They should also carry a dose of injectable corticosteroids in case of emergency, so that they, or someone else, can give them a potentially life saving dose of steroids. Much like someone with anaphalaxis should carry an epipen.
In the meantime, daily prednisone is necessary.
Unfortunately the fact that my body needs prednisone to survive doesn’t negate all the terrible potential side effects of prednisone.
At this time I have high blood pressure, and high cholesterol. Also high blood glucose and I am on diabetes medication to control it. I am 12-15 kilos overweight. I have cataracts, and I have had glaucoma. Thankfully that resolved, because I was in real danger of losing my eyesight permanently.
All of these things are from prednisone. All of them, with the exception of the cataracts and glaucoma have the potential to shorten my life considerably. I’ve been told that if I keep taking this much prednisone I can expect to lose 10 to 15 years of my life.
But I’ve read that uncontrolled severe Rheumatoid Arthritis takes 10 to 15 years off your life as well.
So. No real win either way.
At least I can fight the high blood pressure, blood sugar and cholesterol with diet and exercise. If I can exercise, and make good nutritional choices. On a high dose of prednisone, I can exercise. I hope that healthy lifestyle choices will counteract some of the damage that prednisone is doing.
We will see.
Still. It is my choice. And this is the choice I am making for me. I cannot live my life on the couch. I just can’t. It’s not living as far as I’m concerned.
Prednisone doesn’t make me pain free. But it does take moderate to severe pain down to mild to moderate pain. At this dose, at least (30mg). I have to taper down from here. And find a balance point. Where I have more mild/moderate days than moderate/severe days. I know I will always have bedridden days, no matter what. But I am aiming for no more than two of those per week. I need to find the dose that gives me that. And then talk about it with my doctors. Listen to them try to convince me that I need to taper lower. And then respectfully disagree.
Unless something worse happens from the prednisone. There are other major side effects. My heart rate is fast. I have tachycardia and chest pains. I need an ECG, but I have been avoiding it. And I need my bone density tested again.
Last time I had my bone density tested, my test results were outstanding. And unique. I caused quite a stir, in fact. I have seven times the bone density of the average person. Very unusual! I am WOLVERINE!!!
And I can honestly tell people I’m not fat, I have heavy bones J.
But seriously, prednisone has the potential to cause even more serious side effects. If and when they appear, I will have to re-evaluate my position. In the meantime, I’m going for a light jog.
Prednisone is such a double edge sword , a wonder drug but a spiteful one at the same time. I’ve just recently been on holiday and just before that I had a 2 week plus flare that knocked me for six, so when I saw my rheumy prior to my holiday I practically begged him for a short course to see me through the holiday so I could enjoy it properly. He switched out my naproxen for a 2 week course of arcoxia and gave the go ahead for a course of pred if I felt I still needed it after the arcoxia kicked in. I knew we’d be doing a lot of walking which is really painful for me so I knew I’d take the pred anyway. He does know that not only is it his last resort med but mine too, but he also knew I was desperate.
I forgot about the steroid flare (gotta feel worse before you feel better right), but by the Monday we were away they’d started to kick in and I had a fantastic holiday with no flare and less pain than normal. When we got home I still had energy which lasted through my taper and for a few days after I’d finished them, it felt so good, I almost felt ‘normal’ and I began to dread them wearing off and going back to my normal. But I knew I had to and happen it did, I felt the pain start to creep back in and energy faded back into next to nothing, but I enjoyed the ‘normality’ while it lasted and I feel grateful to have doctors who do listen to me and take my feelings into account.
I do hope that you can get to a level that is both comfortable (ish), and safe for you. It’s swings and roundabouts as always with our meds, we have to decide what’s more important to us, longevity or quality of life.
So true. Double edged. I’m very glad that you got to enjoy your holiday – its worth it for that little piece of ‘normal’. It does make it so hard when we go back to our real normal tho. Pred is a reminder of what life used to be. And proof that it COULD be that way again, if only we could find another treatment that has those effects, without the side effects. Pred is making my arthritis mild right now…Its still there, but its so much less than usual, that its still kinda blissful!