dexamethasone nightmare!
Comments
-
Meningiomaatomia said:swelling joints after the brain surgery
i just need an opinion, because i am really confuse. My mother had a brain surgery for the removal of parasagital meningioma. It was last September, 2010. She is now living normally except for the pains and swelling on all of her joints. She is not taking the dexamethasone anymore..the doctor advised to stop it after the once a day dosage for one month. What shall we do? What type of doctor shall we consult? She's really having so much pains. any suggestion please? are these pains and swellings curable?
I have multiple meningiomas: skull base, left optic nerve, optic nerve chiasm, carotid artery, left eustacian tube, 2 of the 4 sinuses, amonth other places.
As for the joint pain and the dec, it depends on the dosage of the decadron your mother was taking. How high was it? It has only been 8 months since her surgery and I have heard it is not uncommon for the full effects of decadron to take a while to wear off.
As for who to see, I would start with her private family physician. My doctor has me get a bone density scan every 3 months to keep an eye on my joints and bones. He is concerned about them becoming brittle and even though I am now on Prednisone, he is still concerned about it. He said that I may need to go on Fosamax (sp?) in the future to counter the effects of both the Dec and the Prednisone.
If the bone density scan comes back negative, I would see an arthritis specialist to see what her options are. I have seen advertisements for different medications for RA and for Osteo-Arthritis but the doctor is better able to help.
Regardless, there is no need for your mother to have continual residual pain if there is medical help / medication available to assist her.
Good luck to you and your mother. I hope she finds the relief she needs and soon!
God's Blessings.
Teresa0 -
TAMMY sTAMMY S said:weaning off dexamethasone
I took my last dose this past Thurs. I have been taking it since Jan when I was diag with a GBM grade 4 I felt on top of the world the entire tine I was in this med UNTIL I started the weaning process. As I said, I took my last pill on Thurs, by Sat I couldn't get out of bed. Everything I tried to do was a huge chore. Today, Sunday I am not in bed all day but am still so very tired and zero ambition. Is this normal? I think I am going to call the Docs in the AM,I am so frustrated! I literally slept about 20 hrs yesterday and today I am forcing myself to stay out of bed. Also I have ZERO appetite! I ate so well while on this and have managed a bowl of cereal in the last 2 days.
I was wondering how you were doing with is all? My sister was dx in Feb. just trying to find people that are in the same stage of this thing. We have 6 more radiation treatments and the platlets drop so they made her stop the temador for now. Im really scared...0 -
Mother off dexamethasone, but now losing hair?
My mother went through radiation treatment for 5 weeks that ended this past February. She was on dexamethasone for 4 months and it was absolutely horrible. In March she noticed she started losing her hair. At first we thought she was just over-reacting, but now it is clear that my mother is losing her hair and it is not growing back - she is balding. Is this a side effect of the dexamethasone? Has anyone heard of this before? Any thoughts would be greatly appreciated.
Thanks0 -
Hair LossJulieMc said:Mother off dexamethasone, but now losing hair?
My mother went through radiation treatment for 5 weeks that ended this past February. She was on dexamethasone for 4 months and it was absolutely horrible. In March she noticed she started losing her hair. At first we thought she was just over-reacting, but now it is clear that my mother is losing her hair and it is not growing back - she is balding. Is this a side effect of the dexamethasone? Has anyone heard of this before? Any thoughts would be greatly appreciated.
Thanks
The hair loss is probably from the radiation therapy. Depending on how high the doses were, where they were concentrated, etc. I had minimal hair loss when undergoing radiation therapy but I noticed that after it was over, my hair started coming out in clumps. I decided to have my hair cut very short (think 1960's pixie cut) until it stopped falling out and started growing back in.
As for the Decadron and losing your hair, everything I have read actually states it should make your hair grow, not fall out. But with Decadron, who knows? It is a terrible medication that should either be pulled from the market or at least monitored much more closely than it is.
Best of luck to your mom!
Teresa0 -
I don't think dexa causedJulieMc said:Mother off dexamethasone, but now losing hair?
My mother went through radiation treatment for 5 weeks that ended this past February. She was on dexamethasone for 4 months and it was absolutely horrible. In March she noticed she started losing her hair. At first we thought she was just over-reacting, but now it is clear that my mother is losing her hair and it is not growing back - she is balding. Is this a side effect of the dexamethasone? Has anyone heard of this before? Any thoughts would be greatly appreciated.
Thanks
I don't think dexa caused the alopecia, it's probably more of radiation side effects, I lost all my hair during my WBRT and it took 3 months for my hair to start growing back again...0 -
stopping dexamethazone
you need to be "gradually weened off of this drug"...period...my husband stopped eating and I thought he was going to die within a few weeks, they put him back on it and he did so much better...some cancer patients can never get off of it...mine is one of them. He has Melanoma to the brain...he is terminal, and I called Hospice yesterday...I'm losing him now...but stopping the steroid cold turkey nearly killed him 4 months ago..it was horrible.0 -
Deca Nightmaredigginroots2 said:stopping dexamethazone
you need to be "gradually weened off of this drug"...period...my husband stopped eating and I thought he was going to die within a few weeks, they put him back on it and he did so much better...some cancer patients can never get off of it...mine is one of them. He has Melanoma to the brain...he is terminal, and I called Hospice yesterday...I'm losing him now...but stopping the steroid cold turkey nearly killed him 4 months ago..it was horrible.
My husband just stopped Decadron two days ago. I'm so glad I found this site but wish I had found it months ago. My husband was so full of rage I actually contemplated Divorce for the first time since he was diagnosed in 2007. We have been through alot:
He was diagnosed with Stage 3 Esophageal Cancer 3 months after my daughter was born in 2007 at the age of 36. He went through chemo/radiation, surgery and chemo/radiation like a champ. After many clean PET/CT's we though he was almost in the clear. Then in Jan. 2010 he started having headaches. Come to find out, the brain tumor was probably there when he was origionally diagnosed but since his cancer dosn't usually met. to the brain they never looked there. He had surgery and has had 2 Gamma-Knife procedures, Whole Brain Radiation and just last month underwent Cyber-Knife. As if this was not enough, I was also diagnosed with Thyroid cancer about 8 months ago at the age of 33. I know that my hormones are completely out of whack, but because of this and him being on Decadron it has been even harder to handle. He doesn't understand why I can't handle things the way I used to and I have a hard time not taking his rage personal. I was hopeing that as soon as he stopped the Decadron the "Anger Issues, Silent Treatment and Flying off the Handle for no apparent reason" would stop, but it seems that was just wishful thinking. We argue over the smallest things. I keep telling myself it's just the meds, but he thinks it's me. I can only pray that things get better soon.0 -
Decadronfskcosta said:Deca Nightmare
My husband just stopped Decadron two days ago. I'm so glad I found this site but wish I had found it months ago. My husband was so full of rage I actually contemplated Divorce for the first time since he was diagnosed in 2007. We have been through alot:
He was diagnosed with Stage 3 Esophageal Cancer 3 months after my daughter was born in 2007 at the age of 36. He went through chemo/radiation, surgery and chemo/radiation like a champ. After many clean PET/CT's we though he was almost in the clear. Then in Jan. 2010 he started having headaches. Come to find out, the brain tumor was probably there when he was origionally diagnosed but since his cancer dosn't usually met. to the brain they never looked there. He had surgery and has had 2 Gamma-Knife procedures, Whole Brain Radiation and just last month underwent Cyber-Knife. As if this was not enough, I was also diagnosed with Thyroid cancer about 8 months ago at the age of 33. I know that my hormones are completely out of whack, but because of this and him being on Decadron it has been even harder to handle. He doesn't understand why I can't handle things the way I used to and I have a hard time not taking his rage personal. I was hopeing that as soon as he stopped the Decadron the "Anger Issues, Silent Treatment and Flying off the Handle for no apparent reason" would stop, but it seems that was just wishful thinking. We argue over the smallest things. I keep telling myself it's just the meds, but he thinks it's me. I can only pray that things get better soon.
The medical profession is just now starting to recognize a condition called "steroid psychosis" as it relates to Decadron. It is a very real condition with exactly the same symptoms you are describing (as well as myself and others) and worse symptoms. This is not to be taken lightly.
When I was on it for a short few days, it felt like eternity to my husband and myself and I was on 40 mgs a day! Luckily for me, my PCP recognized the rage in my eyes when my husband took me into see the doctor and he knew that was not the "real" me. He asked my hubby how long I had been like that and he said since the hospital put me on it. Now, I have never heard my doctor of 8 years swear before, but he did that day. He immediately withdrew me from it and put me on Prednisone. The worst symptom I have had on Prednisone is that I have gained weight.
Please remember that your husband still has the decadron in his system and it make take some time for it to be fully gone before you notice a marked improvement in his moods. Let's hope that as each day passes, that he continues to improve. I will keep you and your family in my prayers.
Teresa0 -
Decadronpalmyrafan said:Decadron
The medical profession is just now starting to recognize a condition called "steroid psychosis" as it relates to Decadron. It is a very real condition with exactly the same symptoms you are describing (as well as myself and others) and worse symptoms. This is not to be taken lightly.
When I was on it for a short few days, it felt like eternity to my husband and myself and I was on 40 mgs a day! Luckily for me, my PCP recognized the rage in my eyes when my husband took me into see the doctor and he knew that was not the "real" me. He asked my hubby how long I had been like that and he said since the hospital put me on it. Now, I have never heard my doctor of 8 years swear before, but he did that day. He immediately withdrew me from it and put me on Prednisone. The worst symptom I have had on Prednisone is that I have gained weight.
Please remember that your husband still has the decadron in his system and it make take some time for it to be fully gone before you notice a marked improvement in his moods. Let's hope that as each day passes, that he continues to improve. I will keep you and your family in my prayers.
Teresa
From what I have read all of you have not been on Decadron very long, my husband has been on this for 2 years at 8mg per day. We are having a very hard time getting off. Sleeping, reduction in appetite, less cohesion in speech. Has anybody here been on this long?0 -
Weaning Processknucklehead said:Decadron
From what I have read all of you have not been on Decadron very long, my husband has been on this for 2 years at 8mg per day. We are having a very hard time getting off. Sleeping, reduction in appetite, less cohesion in speech. Has anybody here been on this long?
Some of us can't be on it due to severe side effects, but I have been told by my PCP and other specialists, that regardless of the type of steroid, Decadron or Prednisone, etc., when you get to the lower doses, that is when it can seem the hardest.
I am currently on 8 mg of Prednisone a day and my PCP told me yesterday that starting this Friday he wants me to alternate 8 mgs, 7 mgs, 8 mgs, 7 mgs., etc for 2 weeks, every other day. Then he wants me to drop to 7 mgs for 2 weeks when he will see me and have blood tests run. He said that sometimes it is easier on the patients when they can wean down like that so that your body has a good rhythym and knows what it is supposed to do.
You might try talking to his doctor about his weaning process. However, I have heard that weaning off Decadron is a lot harder than Prednisone. Not sure why, but it is.
Good luck!
Teresa0 -
risks vs benefits of steroid therapy during treatmentdsharlee said:risks vs benefits of steroid therapy during treatment
As a nurse for over 30 years, and now under treatment for GBM, I am very aware of the positives and negatives of steroid therapy - for whatever type of treatment, but particularly brain cancer. Yes, different people do have different side effects, including the rare case of "steroid psychosis". But for most people, dexamethasone and other types of steroids have a tremendous benefit, primarily reduction in brain swelling.
It also causes weight gain, and although it is not "addictive" it is extremely important that when discontinuing steroids, the dose be very slowly weaned down or refractive brain swelling will likely occur. If you think the side effects of steroids are bad, the effects of sudden and significant brain swelling are far worse.
Treatment and side effects with this drug should be discussed in detail with your neuro oncologist. I was able to discontinue it within a couple of months of completion of radiation therapy, but I know if I develop certain symptoms, I will probably have to re-start it.
Good luck to you all.
Debbie
Here are some stats about incidence (from: Psychiatric Adverse Drug Reactions: Steroid Psychosis, RC Hall - Clin Advances Treatm Psychiatr Disord, 1991): "The incidence of steroid psychosis varies widely in the literature ranging from 13 to 62%, with a weighted average of 27.6% for some steroid induced mental change, the vast majority of which are mild to moderate and do not herald the development of a full-blown psychosis or affective syndrome. The incidence of a severe psychiatric syndrome in the more than 2,500 patients reported in the literature ranges from 1.6 to 50% with a weighted average of 5.7%."
A lot more can be found via http://scholar.google.com/
So not quite that rare! And it is a scandal that prescribing physicians do not inform their patients and loved ones better! Even conditions that do not reach the severity of actual psychosis can dangerously interfere with care. And I know, because my wife -- who has developed severe maniac hostility after 10 days on 12 mg of Dex -- aggressively rejects my care.0 -
decadronpalmyrafan said:Weaning Process
Some of us can't be on it due to severe side effects, but I have been told by my PCP and other specialists, that regardless of the type of steroid, Decadron or Prednisone, etc., when you get to the lower doses, that is when it can seem the hardest.
I am currently on 8 mg of Prednisone a day and my PCP told me yesterday that starting this Friday he wants me to alternate 8 mgs, 7 mgs, 8 mgs, 7 mgs., etc for 2 weeks, every other day. Then he wants me to drop to 7 mgs for 2 weeks when he will see me and have blood tests run. He said that sometimes it is easier on the patients when they can wean down like that so that your body has a good rhythym and knows what it is supposed to do.
You might try talking to his doctor about his weaning process. However, I have heard that weaning off Decadron is a lot harder than Prednisone. Not sure why, but it is.
Good luck!
Teresa
If one is currently on decadron can they be switched to prednisone w/o any problems? My daughter has been on decadron for a year now and was on 3 mg a day until just recently when she went to the er for problems and they gave her 40 mg via injection and put her up to 8 mg a day. She is now down to 6 mg a day and trying to wean further. She has many side affects from this awful drug and I'm wondering if switching to pred. would help? Any ideas appreciated!0 -
decadronjoycelutz said:decadron
If one is currently on decadron can they be switched to prednisone w/o any problems? My daughter has been on decadron for a year now and was on 3 mg a day until just recently when she went to the er for problems and they gave her 40 mg via injection and put her up to 8 mg a day. She is now down to 6 mg a day and trying to wean further. She has many side affects from this awful drug and I'm wondering if switching to pred. would help? Any ideas appreciated!
they can switch we did with no problem. My sister was on decadron for 5 months.Weened off down to 2 mg every other day then off. She has bone necrosis from it, not a good thing...0 -
Switchingjoycelutz said:decadron
If one is currently on decadron can they be switched to prednisone w/o any problems? My daughter has been on decadron for a year now and was on 3 mg a day until just recently when she went to the er for problems and they gave her 40 mg via injection and put her up to 8 mg a day. She is now down to 6 mg a day and trying to wean further. She has many side affects from this awful drug and I'm wondering if switching to pred. would help? Any ideas appreciated!
I had steroid psychosis on Decadron and was pulled from it and switched immediately to Prednisone. I was on 40 mgs of Dec and switched to 30 of Prednisone without any problems. I have been on Prednisone since February of this year and am being weaned down to a mainenance level of 7 mgs per day which I start tomorrow.
The side effects are different for different people. As I am weaning down on the lower doses, I find I have occasional problems with headaches. But I have been told this is not unheard of. I have also found that by eating 5 or 6 small meals a day instead of 3 that my blood sugar levels are steady and I don't have the constant feeling of having to fill a "hole" in my stomach.
I was taking Prednisone in the a.m. and p.m. and the p.m. dose caused insomnia. So I started taking my p.m. dose at noon with lunch and the insomnia stopped.
I hope she does well and I would encourage her to get off of Decadron. They should take that drug off the market.
Teresa0 -
weak at the knees
My mother had surgery and radiation for brain tumor GBM in January - April 2011. She started on 8 mg of Dex per day and has been gradually reducing the dosage down to 2.5 mg / day by last week. She then developed an occurance that may be related to the steroid but I'm not sure. After sitting for an extended period of more than 20 min, when she gets up she encounters having dizziness and weak legs to the point where she can't stand. This is often followed by blurriness in one eye (or blind spots). The whole episode only lasts a few minutes, but the frequency has increased to the point where it was happening 6 times a day. We decided to increase her dose back to 4 mg/day eventhough we'd love to get her off Dex. Since increasing the dose she seems confused more often than usual now too. I'm wondering if her symptoms are related to Dex, or if it is brain swelling. Her last 3 MRI's are showing no signs of increased tumor growth. If anyone has any experience here it would be appreciated.
Greg.0 -
weak in the kneesdube03 said:weak at the knees
My mother had surgery and radiation for brain tumor GBM in January - April 2011. She started on 8 mg of Dex per day and has been gradually reducing the dosage down to 2.5 mg / day by last week. She then developed an occurance that may be related to the steroid but I'm not sure. After sitting for an extended period of more than 20 min, when she gets up she encounters having dizziness and weak legs to the point where she can't stand. This is often followed by blurriness in one eye (or blind spots). The whole episode only lasts a few minutes, but the frequency has increased to the point where it was happening 6 times a day. We decided to increase her dose back to 4 mg/day eventhough we'd love to get her off Dex. Since increasing the dose she seems confused more often than usual now too. I'm wondering if her symptoms are related to Dex, or if it is brain swelling. Her last 3 MRI's are showing no signs of increased tumor growth. If anyone has any experience here it would be appreciated.
Greg.
my sister had weakness unable to get out of the chair one day, doctor told her to go back on decadron. Then she started to have really bad leg pain. The decadron caused bone nicrosis. in the top of her femor bone. She was having some nausea during that week too. Hope your mom is ok. Decadron can cause a lot of problems0 -
Her steroid is called4theloveofmysis said:weak in the knees
my sister had weakness unable to get out of the chair one day, doctor told her to go back on decadron. Then she started to have really bad leg pain. The decadron caused bone nicrosis. in the top of her femor bone. She was having some nausea during that week too. Hope your mom is ok. Decadron can cause a lot of problems
Her steroid is called dexamethasone, we are in Canada. I don't know if that is different than decadron?0 -
dexamethasone/ decadrondube03 said:Her steroid is called
Her steroid is called dexamethasone, we are in Canada. I don't know if that is different than decadron?
Yes its the same drug.0 -
Decadronfskcosta said:Deca Nightmare
My husband just stopped Decadron two days ago. I'm so glad I found this site but wish I had found it months ago. My husband was so full of rage I actually contemplated Divorce for the first time since he was diagnosed in 2007. We have been through alot:
He was diagnosed with Stage 3 Esophageal Cancer 3 months after my daughter was born in 2007 at the age of 36. He went through chemo/radiation, surgery and chemo/radiation like a champ. After many clean PET/CT's we though he was almost in the clear. Then in Jan. 2010 he started having headaches. Come to find out, the brain tumor was probably there when he was origionally diagnosed but since his cancer dosn't usually met. to the brain they never looked there. He had surgery and has had 2 Gamma-Knife procedures, Whole Brain Radiation and just last month underwent Cyber-Knife. As if this was not enough, I was also diagnosed with Thyroid cancer about 8 months ago at the age of 33. I know that my hormones are completely out of whack, but because of this and him being on Decadron it has been even harder to handle. He doesn't understand why I can't handle things the way I used to and I have a hard time not taking his rage personal. I was hopeing that as soon as he stopped the Decadron the "Anger Issues, Silent Treatment and Flying off the Handle for no apparent reason" would stop, but it seems that was just wishful thinking. We argue over the smallest things. I keep telling myself it's just the meds, but he thinks it's me. I can only pray that things get better soon.
Hi,
I'm from the Lymphoma forum, but found this post while doing a search for decadron. My partner gets decadron (not sure how much) every two weeks with his chemo threatments, which started in June 2011. At first he was fine, but about a month ago, he occaisionally would get so angry with me and fly off the handle over the smallest things (small to me, at least). Does anyone know if the effects from decadron are cumulative? He is angry with me now (and only me - he is fine with most other people) and after a couple of blow-ups this past weekend, is giving me the silent treatment. He only has two more chemo treatments to go, but I may have to call his oncologist to let her know and maybe have her recommend either counseling or something else. I don't know if my partner will listen to me at this point if I bring it up.0 -
Without knowing your partner's normal behaviorRAB73 said:Decadron
Hi,
I'm from the Lymphoma forum, but found this post while doing a search for decadron. My partner gets decadron (not sure how much) every two weeks with his chemo threatments, which started in June 2011. At first he was fine, but about a month ago, he occaisionally would get so angry with me and fly off the handle over the smallest things (small to me, at least). Does anyone know if the effects from decadron are cumulative? He is angry with me now (and only me - he is fine with most other people) and after a couple of blow-ups this past weekend, is giving me the silent treatment. He only has two more chemo treatments to go, but I may have to call his oncologist to let her know and maybe have her recommend either counseling or something else. I don't know if my partner will listen to me at this point if I bring it up.
I would be tempted to say this sounds like the Decadron. However, again, you haven't mentioned the dosage of the medication, etc. so it could just be his frustration levels with the entire process. I was on it for 2 days and I became intolerable to everyone around me; husband, friends, doctors, nurses, etc. That is how quickly it became absorbed in my body.
I am not a doctor so I can't say that counseling won't work, but it sure sounds like the medication to me. I would speak to the oncologist before the next treatment and voice your concerns about what you see happening to your partner when taking the Dec and/or undergoing the chemo. She will know better than anyone what to do for him.
Good luck and keep us posted!
Hugs,
Teresa0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards