I refused to obey the daily dosage, and decided to take first over 200 mg only saturday mornings, reducing the dose to 125 mg after few weeks. I have IBM, so I have nothing to lose. Now, after more than a year, the situation has remained the same, even some improvement can be measured. I also take creatine supplement daily. Blood test in the beginning showed drop in the creatine loss to normal level. The thing of taking just once a week is that prednisolone will cause bone- and muscle loss if taken daily, but not if taken weekly. The effect is just the same but no side effects. In animal tests it has worked better than daily doses, because daily doses kill the body's natural repair mechanism, the weekly enhances it. So it works for me. It stopped the IBM for now. The "standing up from tall chair"-test improved from 8 to 10/ 10 seconds in a year, grip strenght improved 2 kilos left weaker hand, stayed about the same or a kg more with the almost ok right hand. I have had several blood tests, and if the weekly dose is less than 125 mg, the creatine value in blood starts to rise (I am 75 kg male), so for me that is the minimum dose. Saturday evening my energy level is high, so sleep at that night is shorter, and as the dose affects body also in a way it retains water, sometimes slight cramps with the palms of the hands. No adverse effects so far, all blood tests are now like someone 30 years old, I am 61. So, it at least gave me hope ,that is important, but possibly stopped the IBM or at least slowed it down in a way that helps other areas of the body to strenghten and help those fading muscles. I used myself as a "quinea pig" so that nobody else would not need to test this. I am very glad I did, as it seems that the doctors are a bit lost with this. They just do not know enough, have very little courage to try anything unorthodox (legal fear), and actually do not know about the latest studies. And, as they usually are "A-students", they blindly believe obsolete studies; they want to follow "proven science". But I studied everything as well as I could before trying that "my way" so that I would not take overdose or something, as only prednisolone can be used like this way, the simpler prednisone can not as it goes through liver first. So, no usual side effects like muscle- or bone loss, no easy bruising, no problems with blood sugar or infections. And no IBS either until thursday...
The man who 'feels worse' off steroids and mentioned his joints as part of the issue, I BET he also has tendonitis. Often overlooked after steroid weaning, disabling tendon and joint issues appear.
I refused to obey the daily dosage, and decided to take first over 200 mg only saturday mornings, reducing the dose to 125 mg after few weeks. I have IBM, so I have nothing to lose. Now, after more than a year, the situation has remained the same, even some improvement can be measured. I also take creatine supplement daily. Blood test in the beginning showed drop in the creatine loss to normal level. The thing of taking just once a week is that prednisolone will cause bone- and muscle loss if taken daily, but not if taken weekly. The effect is just the same but no side effects. In animal tests it has worked better than daily doses, because daily doses kill the body's natural repair mechanism, the weekly enhances it. So it works for me. It stopped the IBM for now. The "standing up from tall chair"-test improved from 8 to 10/ 10 seconds in a year, grip strenght improved 2 kilos left weaker hand, stayed about the same or a kg more with the almost ok right hand. I have had several blood tests, and if the weekly dose is less than 125 mg, the creatine value in blood starts to rise (I am 75 kg male), so for me that is the minimum dose. Saturday evening my energy level is high, so sleep at that night is shorter, and as the dose affects body also in a way it retains water, sometimes slight cramps with the palms of the hands. No adverse effects so far, all blood tests are now like someone 30 years old, I am 61. So, it at least gave me hope ,that is important, but possibly stopped the IBM or at least slowed it down in a way that helps other areas of the body to strenghten and help those fading muscles. I used myself as a "quinea pig" so that nobody else would not need to test this. I am very glad I did, as it seems that the doctors are a bit lost with this. They just do not know enough, have very little courage to try anything unorthodox (legal fear), and actually do not know about the latest studies. And, as they usually are "A-students", they blindly believe obsolete studies; they want to follow "proven science". But I studied everything as well as I could before trying that "my way" so that I would not take overdose or something, as only prednisolone can be used like this way, the simpler prednisone can not as it goes through liver first. So, no usual side effects like muscle- or bone loss, no easy bruising, no problems with blood sugar or infections. And no IBS either until thursday...
The man who 'feels worse' off steroids and mentioned his joints as part of the issue, I BET he also has tendonitis. Often overlooked after steroid weaning, disabling tendon and joint issues appear.
Can fludrocortisone cause false positive antibodies? Such as N type Calcium channel antibodies.
Does adding a diuretic take away the puffiness and weight gain during treatment with steroids?