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Weaning off dexamethasone - how did you do it?

by mrozdav on Thu Jun 18, 2015 6:36 am

What experiences have people had weaning off dexa­meth­a­sone?

I have been taking 40 mg once a week. I was told at the Mayo Clinic that this dose is low enough so that stopping "cold turkey" is never a problem; they do it all the time. However, before that, my myeloma specialist at Hopkins intimated that there would be a tapering off process.

Am wondering how others have handled the situation.

mrozdav

Re: Weaning off dexamethasone - how did you do it?

by Mike F on Thu Jun 18, 2015 10:53 am

I was under two different dex regimens. One was low dose, which went for four months. I then did one month of high dose. I just stopped and didn't seem to suffer any ill effects from it what­soever.

Mike F
Name: Mike F
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 18, 2012
Age at diagnosis: 53

Re: Weaning off dexamethasone - how did you do it?

by JPC on Thu Jun 18, 2015 12:10 pm

Hello Mrozdav:

Prior to our family's (my wife's) confrontation with multiple myeloma, I had a lot of experience with prednisone due to pulmonary issue with other family members. Dex, I understand, is largely a more con­centrated form of prednisone.

My understanding is that, if you had the steroid on a daily basis for an extended period of time, then you would have to wean yourself off of it. A large dose once or twice a week is like a "shock" dose of the steroid, which does not require weaning, though it has its own issues.

There is a condition called steroid rebound. Since I never had it, I cannot tell you what it entails, but I did need to wean off of prednisone a couple of times many years ago. If weaning is needed, the doctors generally know by now the right schedule to give. You do not get the steroid rebound from the "shock" dose of dex, but as you know, there are other effects.

JPC
Name: JPC

Re: Weaning off dexamethasone - how did you do it?

by mrozdav on Thu Jun 18, 2015 12:48 pm

JPC, thanks for this posting. I have been taking 40 mg of dexamethasone once a week for the last eleven months. If I understand you correctly, each week's dose is deemed a "shock" dose and I do not need to be weaned off it but can fully stop at any time. However, "shock" doses apparently have "their own issues." If you mean by this something other than the usual insomnia, initial hyper reaction, red flush, etc., could you elucidate? Thank you.

mrozdav

Re: Weaning off dexamethasone - how did you do it?

by TerryH on Thu Jun 18, 2015 1:29 pm

JPC makes a good point about the difference between continuous (daily) steroid treatment and once- or twice-a-week treatment.

If you're taking a steroid continuously, your adrenal glands do some natural compensation, reducing the amount of steroid hormones that they produce. If you then suddenly stop taking the steroid, your body doesn't get the steroid hormones it needs to function properly, which can cause a lot of different problems -- sometimes severe.

There's a discussion of this in the Wikipedia article about prednisone. It specifically mentions that the problem usually occurs if the steroid is given daily for 7 days or more.

https://en.wikipedia.org/wiki/Prednisone#Dependency

Because of this issue, I believe many of the prednisone packets sold for things like rashes have built-in tapering-down doses. This helps make sure that people taking the drug slowly reduce their daily dose as they near the end of treatment with the drug.

TerryH

Re: Weaning off dexamethasone - how did you do it?

by JPC on Thu Jun 18, 2015 2:39 pm

Mrozdav – Answering your questions, I was referring to the normal issues with dex that are often discussed. I was not trying to be cryptic, but I know that its a big issue for many people, and I did not want to minimize it. Regarding the "continuous" vs "shock", you understood correctly what I was trying to communicate. Regards,

JPC
Name: JPC

Re: Weaning off dexamethasone - how did you do it?

by sljennin on Thu Jun 18, 2015 8:42 pm

I was taken off dex without a major incident, but everyone reacts to meds differently. If dex makes you extremely hyper/high, or if you are taking a med for depression, you may feel an unusual low.

Talk with your doctor, again. I suggest that you ask your doctor if you can take dex without your other treatment drugs. This may be the issue, along with insurance problems. What a blessing
to no longer be taking weekly drugs.

Best wishes.

sljennin


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