[hopeful27]

Doctor wants to remove all steroids

by hopeful27 on Sat Jun 20, 2015 11:24 am

At the latest visit with my mom's specialist, he wants to remove her from all steroids since she caught pneumonia. I'm a little nervous about this. She went from dex to prednisone to nothing starting next week. Has anyone gone no steroids cold turkey?

[cdnirene]

Re: Doctor wants to remove all steroids

by cdnirene on Sat Jun 20, 2015 9:26 pm

I've been taking dex and Velcade since last September. After the first month, the dex dosage was 40 mg a week. That was dropped to 20 mg of dex a week in February. I didn't notice any difference. I finished chemo on June 5 and that was the last day I took dex. I'm only taking valcyclovir now.

I had balance issues when I was on dex. Since stopping, my balance has slowly been improving. I've experienced no negative side effects from stopping abruptly. Perhaps it depends on dosage?

[vicstir]

Re: Doctor wants to remove all steroids

by vicstir on Sun Jun 21, 2015 5:21 am

When I was initially reduced off dex, by half dose, it left me ridiculously emotional. I thought I was going crazy. Was crying for nothing at the drop of a hat.

It wasn't until I had a follow-up appointment when I asked what was wrong with me, that I was told coming down or off dex can cause a depression effect. Not sure if it's the same for all "roids".

Personally after the short hick up in emotions, I was happy to be off them.
I will use it again if I must but the longer I'm off them the better.

Vic

[JPC]

Re: Doctor wants to remove all steroids

by JPC on Sun Jun 21, 2015 10:57 am

Good morning, Hopeful:

I happen to be somewhat experienced with pneumonia based on past family issues. With pneumonia, you want to be sure that the antibiotics clears out all of the pneumonia. Steroids, as an anti-inflammatory can reduce/eliminate the symptoms, making it appear that the pneumonia bacteria is gone, but it is not completely gone. Accordingly sometimes bad scheduling of steroids and antibiotics have resulted in the pneumonia rebounding back. Tapering off of steroids is a standard treatment for pneumonia.

I would imagine that after the pneumonia is all cleared (let's say maybe one or two weeks symptom clear) that your doctor will probably come up with a plan to get your mom back on the steroids as part of her multiple myeloma treatment. I am guessing it is a temporary measure to treat the pneumonia. Ask your doctor. If this is a more permanent approach, I would certainly ask why.

During induction last October, my wife had a pulmonary issue that was after the fact called a "near pneumonia". This happened to occur during the off week at the end of the cycle. She was prescribed with antibiotics, though it took some time to recover from it, she did not miss a scheduled treatment in the RVD (Revlimid, Velcade, dexamethasone) induction.

[Eric Hofacket]

Re: Doctor wants to remove all steroids

by Eric Hofacket on Mon Jun 22, 2015 12:37 pm

Four years ago I went off 40 mg once a week of dexamethasone and Velcade cold turkey because of orthostatic blood pressure problems. Over the next four months, I lost about 60 lbs and felt like crap a lot.

Looking at the list of steroid withdrawal symptoms in various internet sites, it does seem like I was experience many of them. But was it steroid withdrawal, stopping Velcade as well, or the effects of neuropathy damage and/or the host of other drugs I was still taking for neuropathy, I really do not know.

I see it commonly said that steroids need to be tapered off and get warnings about this from the pharmacist and the printed material I receive when getting a steroid prescription. In past years, when I was given steroids for sinus infections, I was always tapered off and warned to it this way or serious problems could result.

The last time I stopped dexamethasone early this year, I was tapered off. I am as confused as you are about this conflicting guidance on steroids. If the doctor feels there is a good reason to stop steroids without tapering off given the circumstances, there probably is but I would not expect that to mean there are not going to be problems with withdrawal doing it this way.