As I taper my prednisone a mere 1/2 mg every two weeks (now down to 5 mg), I've now been getting low blood pressure and lightheaded. Took a three hour nap yesterday and was dizzy even in my sleep and woke up drained and could fee my blood pressure was low. Also have been getting increasingly thirsty, craving salt (and thus salting everyting) and huge amounts of fluid. Increasing fluids and salt helps at times (probably increasing my blood pressure) but this is exhausting trying to keep up.
I contacted my endocrinologist recently (who is directing my taper) and told him about my fogginess,memory lapses, etc during taper and he told me it's withdrawal symptoms and the best thing I can do is push through it. Things didn't improve after a week so I contacted my rheumatologist and told him about my vision changes, lightheadedness, and fogginess and he told me that if he were me he'd follow my endocrinologist's recommendations.
Is this normal? including the salt and water cravings and low blood pressure and extreme lightheadedness? Will it eventually go away if I keep plugging along on the taper?
Campbell's soup will get your sodium up and replenish without having to drink so much water Drinking a ton of water will dilute your body's sodium leading to salt cravings then more water and in the circle you are
It will go away. The symptoms sound typical to me. The 5mg mark is about what our bodies naturally produce when not on prednisone. So when we take prednisone we shut off our natural production. It can take up to a month to have your body start producing it again depending on how long you were taking it and how much you were taking. I prefer fast tapers because you get it over with faster. You feel like serious crap for a week but then you start feeling better. A fast taper is from 20mg to 0mg in two weeks. I refuse to take it anymore though, my bone density is not so great. Good luck. Btw, I always feel like I have diabetes when I taper because of the salt and water cravings.
Thanks for bringing the topic up. I am right now tapering down from 7.5 to 5 mg and feel similar issues. Along with that I have started very bad lower back ache. And mildly swollen wrists. Is this also normal?
It took me three tries before I was able to successfully taper off prednisone completely. My pain and swelling would start coming back so I’d up the prednisone and try again in a month or so.
One thing I’ve found that might help you is that my potassium is way down, almost out of the normal range. This can cause weakness. I started taking potassium supplements and I feel better. Also, bananas have lost of potassium. That’s an easy thing to try because unless you have kidney problems, you just pee out any excess potassium you take in.
I am not seeing an endocronologist but I have tried to taper off the 5 mg many times and it ends up I can barely walk. I get so bad that I have seriously thought I was going to have to get a wheelchair. I have lasted several weeks before giving up and going back on the 5 mg.
Have any of you done AM cortisol tests and ACTHs? That might help you figure out withdrawal symptoms vs real emergency. I’m a primary autoimmune Addisons patient. I will never get off steroids! If you can, and I know it’s hard, more power to you! They are life saving but they are also killing me.
I haven't tried that Louise. I need to ask the internist in IL about these tests. Thank you!
louise said:
Have any of you done AM cortisol tests and ACTHs? That might help you figure out withdrawal symptoms vs real emergency. I'm a primary autoimmune Addisons patient. I will never get off steroids! If you can, and I know it's hard, more power to you! They are life saving but they are also killing me. :(
Lilac83, I have been on prednisone for a long long time. I am at 10mgs. I tried going to 9mg. but I could barely get up. I tried every other day 9 and the other days 10. It wasn't much better. I am so glad that I found your post. I am going to try it your way. 1/2 a week and see how that goes,.. Thank you so much for bringing this topic to the forefront.
Thanks everyone for you input. Pollengrain, you may want to contact your rheumatologist.
Phoenix, hope this way to taper helps you!
Louise, my endocrinologist plans to possibly check cortisol levels when I get to 4 mg. Not sure why the wait since I was doing so poorly at 5 .5 mg and 5mg. And I'm not sure why when I updated my rheumatologist to let him know of my problems with the taper, he just told me to follow endocrinologist's recommendations. ?? My doctors must see this all the time in their practice and know it's "normal". Not really sure.
I feel the same way, my rhematologist has put me on 10 10 5, and i am staring to forget things, even the simplest things. I am getting really sleepy during the day and more nervous every week! even the smallest things would annoy me. has anyone experienced depression?
Bilijana, in my experience I wouldn't really call it depression with a taper, but I get temporarily really down when my brain is foggy (like anything will send me into tears) because I'm so frustrated that I can't think straight. As soon as that fog clears up, I bounce back and I'm fine. But this is just my experience. I have read and heard that depression is very common both on prednisone and during a taper.
