dexamethasone nightmare!

Hi,

Last fall I was able to come off dexamethosone after being treated with it for brain edema.  The trick to coming off without side effects is to gradually (this is the key word) decrease your dose according to your doctor's advisement.  If you decrease your dosage daily, this could be the cause of your problems.

First speak with your oncologist, NOT the radiation specialist.  Indicate the symptoms you are having and ask for a solution.  Every patient should be able to get off steroid therapy and most do it without complications.  Sometimes it takes weeks which was my case.

Most importantly use your oncologist or nurse navigator to answer these questions specifically for your case and dosage requirements.  Getting off steroids is one of the first steps to feeling better.  Doses must always be carefully tapered according to your doctor's recommendation.

We are very familiar with the Decadron nightmare. My wife (47), Leslie, has been fighting her brain tumor (anaplastic astrocytoma, non-resectable, in the center of her brain (thalamus region) for the past eight months. Of course we did the cut, burn, and poison medical routine which really only made her worse. I won't go to into the backstory now, but I will tell you what we have done to help wean her off of Decadron.

We have had my wife on high doses of cannabis extract high in CBD (cannbadiol) (and it has some THC, which is important in her case). It would be good for you to look this up or anyone else to look it up out there, but the CBD with in the cannabis plant especially in high concentration has proven to be very effective in helping her get down to almost no Decadron without any dramatic change in her presentation. I've spent the past six months researching this and the last three months giving her the high CBD cannabis oil. Believe me, we get what Decadron will do to you. It appears that if the tumor doesn't kill you the Decadron will probably get to you first. The medical world is really of no help when it comes to the dilemma of getting someone off such as damaging medication that you become almost completely dependent on to live.

We have now completely bailed on the medical model. My wife's prognosis still is not good but we do have hope, and it has been shown in various studies that the cannabis extract (CBD) in high concentrations not only reduces swelling, could prevent seizures, but it also has been shown to possibly kill cancer cells. We are at a point where we have to completely go for this. My wife has been nearly camatose for many months but with the CBD is starting to wake up, has more movement, and appears to have stabilized.

I guess there'll probably be more of us who are the guinea pigs for alternative treatment that gets us away from the amazingly damaging medical treatments. I'm open to anyone who wants to talk about this more or has questions.

Sincerely,

David

Hello 

I am new here, and I too have been going thru the Decadron nightmare. The swollen  face (Moon face) the reavenous appetite, swollen belly legs and feet WOW I feel so swollen  that if I swell anymore I will explode. I have Metastatic Breast Cancer that I have been surviving now for nearly 10 yrs but due to hospital error and falling thru the cracks of the system the Cancer spread to my T1 Vertibra which is gone now from there but now it is in my hips and L3 disc which is fractured at present and it was causing Spinal Nerve Compression. I was hospitalized for nearly 2 weeks awaiting major surgery to repair this fracture. I was given i.v Decadron 4mg every 6 hrs. The fracture miraculously started healing and I was sent back home to continue with the Decadron but orally  this time.  My Vision started to become greatly affected, I called my pharmacist to inquiire if Decadron could cause problems with vision.  There was a pause on the phone as I spoke to my pharmacist while he checked , and sure enough he says,"it's rare but yes it can affect the vision" then he tells me to cut the dosage in half from 4mg 4x a day to 4mg 2x a day So instead of 16mg a day I would take 8mg a day. And as far as the swollen EVERYTHING this is normal and once I stop taking them it will all reverse itself..Now it is weeks later I have seen my Oncologist and he has put me on 2 mg a day with the intention of weaning me off slowly..My feet and legs swelled so bad ny Oncologist had to put me on Lasix and I am on the couch as I type this with my feet elevated higher than my hips.  My feet and legs swelled so bad I could barely walk! My face is still swollen and I hate having this "Moon Face" it is just awful. and the swollen abs, wow I look about 7 mths pregnant! I usually have a flat belly! All in all I wish I had more answers . I have been doing a lot of research about these Steroids and  would highly recommend that others or their loved ones do the same and research these drugs, youo'll be surprised at what you find. It is scary. There is this theory that Doctors run with and that is that if the benefots outweigh the risks then it is worth it,,,well ya I can understand that it is like Spock said in one of the Star Trek movies., "The needs of the many outweigh the needs of the few"..but you know what whether you are part of the few or part of the many taking something into our bodies with the belief that it is for our own good is all good. But is it really good for us? Well let's see. it has affected my vision to the point that I had to purchase over the counter computer/reading glasses so that I can see my computer ,cell, television screens! I used to have above perfect visiion. My face ..well I don't even recognize my face anymore it has swelled up so bad! Moon Face they call this well I much rather look to the sky for the moon . I don't want to be repetative but I am angry that I was given something like this. Without being told or warned rather of the side effects. Right now I'm having intense pain in my hip joints and right knee and some other areas that were not hurting me till my Oncologist lowered the dosage. But that's ok I will do whatever it takes to get this drug out of my system, and  if weaning me gradually is the way to do it and there is pain along with it then I think I will grin and bear it if it means that I will have my body and vision back.

hi everyone - survived two radical surgeries one in 94 and again in 2007 - both times had long term dexamethasone treatments - was weaned off and follow up is annual mri as still have inoperable tumour round main vein into brain!  i put on extreme weight with both surgeries as i was not informed to restrict myself from eating  - as a consequence i also hit menopause at last treatment and  remain 30 kgs over weight still - seems no matter what diet it is stuck to me like glue - i also have ongoing back and sciatic pain plus my right knee gives away frequently !  is there anyone else out there who may have had similar and is now living with the after affects / weakened areas ?  - long shot i know but worth asking !  

My husband has GBM stage 4 since Oct 2016. He has undergone 2 awake cranial surgeries & has been on dexamethasone ever since. He had dosage changes & times of being off the drugs from short periods of time. He is now trying to recover from adrenal suppression, his adrenal glands are no longer functioning. This was discovered by his dermatologist,  he suggested we have blood work done to check his cortisol levels. Which we did & found he has secondary adrenal suppression caused by the steroid. His oncologist recommended a endocrinologist.  We are waiting for an appt. The effects of this are very dangerous. I have been keeping him functioning & alert with Pedialyte & CBD OIL . It seems to be working so far but I realize this is only a temporary fix. This is a nasty drug which has horrible consequences

My mom (82 y. ) has a multiple myeloma cancer. She is on chemo. since 3 years..During her first three months in the hospital she got few doses of decadron and than after that she was on prednisone. Prednisone she was receving with another drug melphalan. These, she was taking once per month for 3 days and the dose were 6, 8 and 10 mg. Few months ago doctors told us that she will have to change drug for Myeloma. They want to put her on new drug. But because we were going on hollidays they gave her temporary dexamethason for two months. It took only one dose to see the reults which some persons on this forum are discribing...mood swings, agressivity, luck of sleep, big appetite, very high pressure going to 200 even...and dizziness. All three drugs did some changes in her personality...decadron, prednisone and the last one. But dexamethasone was far the worst! And the description of the side effects from the pharmacy is very innocent! Stay away from this drug if possible!