my husband finished treatment on tuesday and they are keeping him in hospital untill he can swallow the meds ,they expect him to be out early next week.A IS ABLE TO LEAVE THE HOSPITAL FOR A FEW HOURS AND HAS BEEN USING HIS BICLCLE GOING BACK AND FORTH TO THE HOSPITAL ! SINCE THURSDAY THEY HAVE TAKEN HIM OFF DEXAMETHASONE (THEY THOUGHT HE WAS OFF IT FOR THE LAST 16 DAYS).HE IS ON 2M TWICE A DAY AND MY GP SAID THIS STEROID IS VERY VERY STRONG ,HE IS ALSO TAKING MORPHINE FOR THE PAIN.HAS ANYONE TAKEN THIS STEROID AND FOUND IT HAS EFFECTED THERE MIND /BEHAVIOUR . IF SO HOW DID IT EFFECT YOU OR THE PERSON YOU CARED FOR.WHEN YOU STOPED TAKING THE STRROID WHAT HAPPENED AND HOW LONG WAS IT BEFORE YOU RETURNED TO YOURSELF.THE CANCER, THE TREATMENT ,THE DRUGS, I KNOW ALL OF THERE THINGS HAVE A LIFE ALTERING EFFECT BUT I HAVE LOST MY HUSBAND WHO WAS FINE BEFORE HE STARTED TAKING THE STEROIDS AND THEN LOST ALL REASON , I KNOW HE IS NOT WEEL AND I AM TRYING TO HELP .I HAVE OUR GP BUT THERE IS VERY LITTLE WE CAN DO .I SPOKE TO THE REG ETC,WHEN HE NEEDS ME THE MOST HE HAS DECIDED TO NOT TALK ,NOT COME HOME ETC AND I AM POWERLESS TO DO ANYTHING.HE IS NOT SPEAKING TO ME DOES NOT WANT TO SEE ME ETC MY FAMILY ARE GREAT AND I HAVE LOTS OF SUPPORT ,BUT I AM SO WORRIED FOR HIM SO UNCONSOLABLE AND HOPE IT WILL ALL END SOON AND I WILL GET BACK MY HUSBAND.

Oh Dex...not a fan of that drug. Dexamethasone, or Dex as it's known in the doping community is a powerful synthetic glucocorticoid steroid that has powerful anti-inflammatory effects and is an immunosuppressant.

Dex is about 27x stronger than the naturally occurring Cortisol and roughly 7x stronger than Prednisone. It is sometimes administered in conjunction with some chemotherapies to counter side effects of drugs used to treat brain tumors and also as a direct chemotheraputic drug hematological malignancies or in combination with other drugs. In the doping communities Dex is used for athletic performance enhancers as it's a powerful anti-inflammatory.

I'm not a fan of this drug really mostly due to it's really harsh side effects which include:
Stomach upset, increased sensitivity to stomach acid to the point of ulceration of esophagus, stomach, and duodenum

Increased appetite leading to significant weight gain

A latent diabetes mellitus often becomes manifest, glucose intolerance is worsened in patients with pre-existing diabetes

Immunsuppressant action, particularly if given with other immunosuppressants, such as cyclosporine, may allow bacterial, viral, and fungal disease to progress more easily and can become life-threatening; fever as a warning symptom is often suppressed.

Psychiatric disturbances, including personality changes, irritability, euphoria, or mania

Osteoporosis under long term treatment, pathologic fractures (e.g., hip)

Muscle atrophy, negative protein balance (catabolism)

Elevated liver enzymes, fatty liver degeneration (usually reversible)

Cushingoid (syndrome resembling hyperactive adrenal cortex with increase in adiposity, hypertension, bone demineralization, etc.)

Depression of the adrenal gland is usually seen, if more than 1.5 mg daily are given for more than three weeks to a month.

Hypertension, fluid and sodium retention, edema, worsening of heart insufficiency (due to mineral corticoid activity)

Dependence with withdrawal syndrome is frequently seen.

Increased intraocular pressure, certain types of glaucoma, cataract (serious clouding of eye lenses)

Dermatologic: Acne, allergic dermatitis, dry scaly skin, ecchymoses and petechiae, erythema, impaired wound-healing, increased sweating, rash, striae, suppression of reactions to skin tests, thin fragile skin, thinning scalp hair, urticaria.

Allergic reactions (though infrequently): Anaphylactoid reaction, anaphylaxis, angioedema.

For some the "weight gaining" properties of this drug is thought to be a benefit to cancer patients however the weight gain is not lean muscle tissue, as another side effect of the drug is muscle atrophy due to it's catabolic influence, but rather adipose tissue (fat) and water retention. This type of weight does little to help a cancer patient as there is a direct relationship between survival rates and lean muscle mass percentage.

Anyway there is the "long" version of the drug, some notable interactions:

NSAIDs and alcohol: increased risk of gastrointestinal ulceration

Mineralocorticoids: increased risk of hypertension, edema and heart problems

Oral antidiabetic drugs and insulin: antidiabetic therapy may have to be adjusted.

They don't usually take you off high dose steroids cold. They usually decrease the dose gradually. You may have to deal with the change in behaviour for a little while. Hang in there.

A HAS BEEN ON DEX SINCE AROUND THE 8TH MAY TO DECRESS THE SWELLING OF HIS TONGUE AFTER ABOUT TWO DAYS HE STARTED TO BECOME VERY IRRATATED ,HE WAS ONLY SLEEPING FOE 2/3 HOURS AND HAD LOADS OF ENERGY AND WAS WORKING ON 10 DIFFERENT PROJECTS HE KNEW AND JOCKED ABOUT THE EFFECTS THE DEX WAS HAVING ON HIM PHYSICALY AND ALSO MENTALY AND ASKED ME TO SAY IF I NOTICED HIM BECOME EXCITED TO "NOT USE THE DISCO VOICE" SOON ALL WENT INTO OVERDRIVE .I LOOKED UP AND ALSO TOLD MY GP ABOUT MY CONCERN ABOUT THE EFFECT DEX WAS HAVING ON HIS MENTAL WELLBEING AND OUR GP AGREED THAT HE WAS VERY HIGH AND SPOKE TO THE REG.THEN THE TEAM HAD HIM ON THE DEX FOR THE CHEMO TO REDUCE THE NAUSIA .AS I SAID IN MY LAST POST THE REG THOUGHT HE WAS OFF THE DEX FOR THE LAST TWO WEEKS,A DOES NOT DO DRUGS AND EVEN TAKING ASPRIN HE WOULD BE CARFUL WITH.HE WAS DRINKIND BEER AS HE THOUGHT HE WOULD NEVER BE ABLE TO TAST IT AGAIN ,SO WAS TRYING ALL THE BELGIUM BEERS (WHICH I SURE DID NOT HELP).BEFORE HE WAS TOLD HE HAD C HE ONLY HAD 2/3 BEERS ON A FRIDAY WITH HIS FRIENDS.SORRY FOR GOING ON ,FOR THE MONTH BEFORE A STARTED HIS TREATMENT AND BEFORE THE DEX HE WAS GREAT AND I KNEW 3 WEEKS INTO THE TREATMENT AND FOR A FEW MONTHS POST TREATMENT WOULD BE VERY HARD ON HIM BUT WE HAD EACH OTHER OUR KIDS AND LOTS OF THINGS PLANED TO MAKE IT EASER HAVING THIS TERRIBLE THING I KNEW WE COULD DEAL WITH BUT THE EFFECTS OF THE DEX ON MY HUSBANDS MENTAL HEALTH AND ACTIONS HAVE BEEN AWFUL AND I DIDNOT KNOW WHAT TO DO.HOW LONG BEFORE A COMES DOWN FROM DEX AND BEGINS TO ACT RATIONALY?WILL HE BECOME DEPRESSED?WHAT CAN I DO TO HELP HIM . A THANK GOD IS DOING EVERYTHING IN HIS POWER TO GET OVER THIS TREATMENT AND TO GET RID OF THIS CANCER ,HE IS NOT A DANGER TO HIMSELF OR OTHERS .FINALY HE HAS NOT MENTIONED TO ANY OF HIS FRENDS OR FAMILY THAT HE IS NOT TALKING TO ME AND STAYING IN A HOTEL AT THE WEEKEND ,HE HAS SAID NOTHING TO ANYONE ABOUT THIS WHICH IS NOT UNUSUAL AND WOULD BE HORRIFIED IF I SPOKE TO THEM SO I HAVE TO PRETEND THAT ALL IS WELL.JUST SPOKE TO OUR GP AND HE SAID WOULD CHECK WITH REG THAT THEY MONITOR HIS C(cant think of name) levels as dex will swithc off the bodys natural ability to produce and then when come off must check levels in body as can be open to infection and get adersons .

Im concerned about your husband being off by himself in a hotel. Has the doctor begun weaning him off this medication? Sounds to me like his reaction to it makes it something that should be addresses immediately so he isnt a danger to himself.

Best wishes!!!!



PS....Please dont write in all capitals as it makes things harder to read.

I told the doctor/reg in the hospital on wednesday that I had checked with the nurse and my husband was still on dex (the day before i visited the hospital and spoke to the reg and he told me "A" was off dex for two weeks and was on nothing that would interfer with has mental state)I am speaking to my GP,family and "A" sister who lives in america and they all feel that there is nothing I can do now .Because he is sick and just finished this terrible treatment and still in hospital and telling no one what he is up to (I didnot know he was let out of hospital at weekends as friday night he leaves the hospital and meets up with his frends and the last two saturdays he has come home for an hour and arranged to meet kids in bar to watch match etc .its just when i saw him taking his food for the tube last saturday that i thought and asked him if he was out for the night and he would not answer)my son who is home on thursday hopefully will be able to find out what his plans are.he is not well enought now I think to have a rational converstion with and in his mind he is right and doing the best thing for his recovery.There must be someone out there who allso went of the railon dex? or one of the meds they were given .
i will phone the hospital and check if he is there ,he does not answer my text or emails,and as I said he has not mentioned any of this to anyone.
Sorry about the capitals I thought it would be easer to read.When I type in this box how do i make the box the size of the full scream so I can see what I am typing.

Seana,
when you hit the reply button, use the Preview Reply button - the area you have to type in will be the same size, but you will be able to review what you have just written below.

When my mother was on prednisone she was very irritable. In the States, here, the phrase 'Roid Rage (for steRoid Rage) is used to describe the reaction to drugs like dex. You are definately not alone with this difficulty. If the rest of A's family can keep an eye on him while he is being irrational, it might be best. Keep his doctors up to date on all that is going on.

As care giver to care giver, I wish I could give you a hug. It is hard enough to bear the worry of the disease and treatment, but to add in the emotional pain of the irrationality and rejection must be horrible. Please, please, kept telling yourself it is the dex talking, not your husband. You will have him back in the near future, but I am so sorry this happened in the first place. Thoughts and prayers for you and A heading from Ohio to the other side of the world.
Maria

Maria,
Its is all such a mess and trying to be loyal and not say anything to anyone is so hard .I have my family ,"A" sister and my GP plus a counsellor who I got which is all helping ,its just the worry,the not knowing what to do and afraid to of doing the wrong thing and the unbelievable sadness and guilt.I phoned the hospital and he is in over the weekend which is great so I dont have to worrie about that,they said he had gone out which is fine maybe he is visiting a friend.I will call in tonight and will know if he wants me to leave and will go,however I have been doing this and I think it really upsets him so I will email him again before I go to check but he does not seem to be looking at or answering my emails which I keep nutural and just tell him news of kids and that i am praying for him and sign off take care ,love seana.I will visit the reg in the hospital on monday and talk to them.I think when my son comes home on Thursday things will be better and I will know more of his plans.
thank you all.I wish I was talking and asking for advise on his diat,exercize ,things that would make his recovery better and not this which I feel is not related to BOT cancer but brought on by the meds he was given.
seana
P.S Have a great holiday and I know this will all end and hopefully I will be laughing with my husband about this in a years time.

Hello - you're married to this man even if he doesn't talk to you go see him and make him listen. Ultimately you've done all you can - I do understwnd it may be the drugs or him trying to deal with the after effects, and reality, but what he's doing is still not right. Do not abandon him, but you have children to worry about.. Tell him as much, tell him you're there for him, then back off and focus on you. Spend time at home doing what you want and with friends and family. You can't make him do what you want - so let him be. Eventually he may find his way back, but a some point you have to leave it up to him.hugs

I text him and said i would call in for a few minutes tonight and he replied "very contentand would like to stay that way so would prefer if you didnot call".He is not well and I can do nothing and trying to talk to him and explain would send him into a rage he does not have the ability now to think stright ,there is no logic.I just have to let it be and when he is well then I can sort this all out.I just thought there would be others whoes partner became awful and they would be able to say it can and dose happen and this is the course it will take.He is not well now so I can not at this time tell him he is being crual ,unreasonable ,unstable,manic etc as he does not have the mental ability to grasp and understand this .His reality and ours are wourlds apart ,unfortunitly I am so cought up in it emotionaly ,that it takes me time to become calm and understand what is happening , and the fear, hurt ,worry ,sadness etc all dont help me seeing things rationaly.I am fine now and will not worry.I will speak to the team and let them know what is happening and our GP and hope things settle.
seana

thank you for your help and advise