I just finished two years of maintenance meds after a tandem stem cell transplant and am in stringent complete remission. However, I feel I may be having steroid withdrawal and have fatigue, nausea and diarrhea, no appetite, and muscle weakness and neuropathy in extremities.
My question to the group is how many have experienced this and how long before you felt better?
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Re: Steroid withdrawal - have you experienced it
Hi,
I'm from the UK, but I don't think it should make much difference to my reply. I have experienced bad withdrawal from dex on several occasions, including at the moment. I am extremely tired, have very loose bowels most days, feel nauseous, have muscular twinges and weakness, achy joints etc.
Doctors should make sure you taper slowly. The longer you've been on them and the higher the dose, the stronger the withdrawal. I had to come down quickly, for various reasons.
People experience withdrawal differently, but it can be dangerous. Your adrenal glands will not be producing enough cortisol to replace the dex. You need to have a synacthen test. Don't ignore it. It is a secondary cause of Addison's disease.
Your measured levels should go up over the course of the test but sometimes, as in my case, they go up, but are still too low. So make sure you talk to someone who knows what they are doing, e.g., an endocrinologist. If you have a problem, they put you on hydrocortisone I believe. I am still waiting for more detailed feedback on mine.
Take care,
Sarah
I'm from the UK, but I don't think it should make much difference to my reply. I have experienced bad withdrawal from dex on several occasions, including at the moment. I am extremely tired, have very loose bowels most days, feel nauseous, have muscular twinges and weakness, achy joints etc.
Doctors should make sure you taper slowly. The longer you've been on them and the higher the dose, the stronger the withdrawal. I had to come down quickly, for various reasons.
People experience withdrawal differently, but it can be dangerous. Your adrenal glands will not be producing enough cortisol to replace the dex. You need to have a synacthen test. Don't ignore it. It is a secondary cause of Addison's disease.
Your measured levels should go up over the course of the test but sometimes, as in my case, they go up, but are still too low. So make sure you talk to someone who knows what they are doing, e.g., an endocrinologist. If you have a problem, they put you on hydrocortisone I believe. I am still waiting for more detailed feedback on mine.
Take care,
Sarah
Re: Steroid withdrawal - have you experienced it
Sarah,
What is considered a high dose of dexamethasone? Is there consensus on this question? I was taking 40 mg once a week. I thought that was a low dose, but am now wondering.
What is considered a high dose of dexamethasone? Is there consensus on this question? I was taking 40 mg once a week. I thought that was a low dose, but am now wondering.
Re: Steroid withdrawal - have you experienced it
I have only been on 40 mg a week as well this time and have still had the symptoms. I have had very high dose steroids too, and we had to taper down very slowly that time. After my first transplant, I really suffered, but didn't realise that withdrawal was the problem. It doesn't seem to be something a lot of doctors take any notice of. Having said that, some people don't seem to be affected anything as like as much.
I think those of us who do get withdrawal should note that if we have an operation or some sort of bad shock in the year after having steroids, we may need to have some steroids - or at least tell the doctors that we have come off them in the preceding 12 months. Presumably this is because your adrenaline levels rise. I have had steroid doses before having a tooth removed and also some minor procedures like a colonoscopy.
I think those of us who do get withdrawal should note that if we have an operation or some sort of bad shock in the year after having steroids, we may need to have some steroids - or at least tell the doctors that we have come off them in the preceding 12 months. Presumably this is because your adrenaline levels rise. I have had steroid doses before having a tooth removed and also some minor procedures like a colonoscopy.
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