My husband has been on dex for a few years now. No other drugs. He takes it every 6 weeks; 5 pills a day for 4 days.
In the past he was fine after about 5 days after finishing the dex. Now he finds that the dex feeling never leaves him. He breaks out into hot clammy sweats daily, has tinitus, feels dragged out and a bunch of other things that dex gives him.
Of course it is impossible to know if it is dex, age (he is 66) or myeloma. His bloodwork is great, still shows a full remission.
I am just wondering if it is possible that the dex has built up in his system so much that he is overloaded with it.
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Re: Dex side effects - does it build up in your system
Hello, marett:
When my wife started induction about a year ago, one thing that I was already familiar with was the dex. Dex is essentially a concentrated form of prednisone. I had to take it periodically for lung issues. My father, who had the lung issues much worse, was on high-dose prednisone for about 35 years until he passed recently at 80 (if it were not for the prednisone and some other very good medical treatments that he had received, he would not have lasted that long). You do get long term effects, and when patients are on steroids for a long term, doctors do like to ween them off of it for a period of time.
I would say the following to discuss with your doctor. Most people would use Revlimid for maintenance; however, if not Revlimid, the second option appears to be Velcade maintenance. I have read that dex does have single agent anti-myeloma effect, but it is typically used to augment the other treatments, not as a primary treatment. Revlimid and Velcade have their own side effect profile, but my (non-doctor) opinion is that at the maintenance level, the side effect profile for Revlimid and Velcade will be less than the long-term dex.
Has your doctor ever explained the reason why he (she) thinks that dex was the thing to do in your husband's case?? As you said, it has kept him in full remission. Maybe he is on to something.
Good luck
When my wife started induction about a year ago, one thing that I was already familiar with was the dex. Dex is essentially a concentrated form of prednisone. I had to take it periodically for lung issues. My father, who had the lung issues much worse, was on high-dose prednisone for about 35 years until he passed recently at 80 (if it were not for the prednisone and some other very good medical treatments that he had received, he would not have lasted that long). You do get long term effects, and when patients are on steroids for a long term, doctors do like to ween them off of it for a period of time.
I would say the following to discuss with your doctor. Most people would use Revlimid for maintenance; however, if not Revlimid, the second option appears to be Velcade maintenance. I have read that dex does have single agent anti-myeloma effect, but it is typically used to augment the other treatments, not as a primary treatment. Revlimid and Velcade have their own side effect profile, but my (non-doctor) opinion is that at the maintenance level, the side effect profile for Revlimid and Velcade will be less than the long-term dex.
Has your doctor ever explained the reason why he (she) thinks that dex was the thing to do in your husband's case?? As you said, it has kept him in full remission. Maybe he is on to something.
Good luck
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JPC - Name: JPC
Re: Dex side effects - does it build up in your system
I had a myeloma friend, Don, who often called himself Dexi-Don. The only treatment he had for multiple myeloma was dexamethasone @ 40 mg/day. He tolerated it well. He lived for 13 years and died of a pulmonary embolism.
Re: Dex side effects - does it build up in your system
I have googled scholarly articles, etc., regarding dex as a stand alone treatment. It is used as a stand alone treatment and has good effect.
For example, this French study,
http://www.bloodjournal.org/content/bloodjournal/107/4/1292.full.pdf
found that single-agent dexamethasone had the same response rate (40%) as the combination of melphalan and prednisone in newly diagnosed myeloma patients. That is almost exactly the same as the overall response rate for single-agent Velcade in newly diagnosed patients, as reported in this study:
http://jco.ascopubs.org/content/27/21/3518.full
Also, this review article mentions single-agent dexamethasone and prednisone as options that can be considered for both newly diagnosed and relapsed myeloma patients, regardless of their physical condition (even though the article is mainly about frail patients).
http://www.bloodjournal.org/content/116/13/2215
I am on a drug called clonidine hydrochloride and I take 50 mg in the morning and 50 at night to help control my sweating. Clonidine does lower blood pressure, so never add a drug to what you are taking without consulting your doctor.
Dex affects us all differently. For instance, I was on prednisolone for maintenance after my SCT and suffered exactly the same effects as your husband. Just waking up and moving was a major achievement on many days. I was on dex before my SCT for induction therapy. Dex made me elevated and I had a manic experience on it - very interesting! I changed back to dex and now have more energy.
Some people will have no side effects, others will have strong side effects to one drug and not another. And others, like myself, will have polar differences in drug reaction even though the two drugs are similar.
I strongly suggest you chat with your specialist as soon as possible - as bumping your bum along the ground when there may be another equally good alternative drug to use, or adjusting the amount taken, is a GOOD thing. Quality of life simply cannot be underestimated, and once you feel good then that sort of feeds on itself - feeling good helps MAKE you better!!
All the best.
For example, this French study,
http://www.bloodjournal.org/content/bloodjournal/107/4/1292.full.pdf
found that single-agent dexamethasone had the same response rate (40%) as the combination of melphalan and prednisone in newly diagnosed myeloma patients. That is almost exactly the same as the overall response rate for single-agent Velcade in newly diagnosed patients, as reported in this study:
http://jco.ascopubs.org/content/27/21/3518.full
Also, this review article mentions single-agent dexamethasone and prednisone as options that can be considered for both newly diagnosed and relapsed myeloma patients, regardless of their physical condition (even though the article is mainly about frail patients).
http://www.bloodjournal.org/content/116/13/2215
I am on a drug called clonidine hydrochloride and I take 50 mg in the morning and 50 at night to help control my sweating. Clonidine does lower blood pressure, so never add a drug to what you are taking without consulting your doctor.
Dex affects us all differently. For instance, I was on prednisolone for maintenance after my SCT and suffered exactly the same effects as your husband. Just waking up and moving was a major achievement on many days. I was on dex before my SCT for induction therapy. Dex made me elevated and I had a manic experience on it - very interesting! I changed back to dex and now have more energy.
Some people will have no side effects, others will have strong side effects to one drug and not another. And others, like myself, will have polar differences in drug reaction even though the two drugs are similar.
I strongly suggest you chat with your specialist as soon as possible - as bumping your bum along the ground when there may be another equally good alternative drug to use, or adjusting the amount taken, is a GOOD thing. Quality of life simply cannot be underestimated, and once you feel good then that sort of feeds on itself - feeling good helps MAKE you better!!
All the best.
-
Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
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