Side effects of weaning off steroids

[lindy]

My husband was on steroids since Jan.31st and then we started weaing him off. He was taking 4 a day. When we got to two a day (for 7 days) he started with the leg cramps but after 4 days they went away but he felt weaker. Then started one pill a day (for 7 days) and he had headaches every day behind his eyes and very weak. Tuesday he wanted me to take him to the doctor's. They put him back on steroids (3 a day) until he has his brain MRI. Within 4 hours he felt much better.

MRI machine broke down so now his appt. is Sat. March 25th and then the week after he see's the doctor for results. Both of us are scared.

But my main question is this: has anyone one else gone through withdrawals from being on these awful steroids? I know they are helpful but the side effects are bad.

And one more question. Why can't you stay on steroids long term? He is taking Decadron.

Thanks for you help

DX 1/31/06 Stage 4 large cell lung cancer/mets to brain (12 tumors)

Cat scans

MRI

Biospy on lung

Whole head radiation (10 treatments)

2 weeks later lost hair and head peeling

Weaning off steroids

The week he took one steroid pill a day, he had headaches behind his eyes and felt very weak..

2/14/06 Very weak, right hand shaking and he's afraid it's a seizure, went to dr. and they started him back on steroids 3 pills a day. Felt better within 4 hours

[mamasbabygirl]

Linda,

My mom has been on decadron long term and if you can avoid it, I would say to try to get him off. Why? Becaue mom has gained over 50 poundss (which makes therapy very diffcult), she has steroid induced diabetes for which she now needs insulin. My mom also went through steroid psychosis, it was very bad. Her rehab Dr. said that the seroids help pain in cancer patients, but they also have many bad side effects.

[J.C.]

Linda,

The weaning period is not the same with

all patients, but it is needed to let the

body adjust itself.

Some patients need a longer period of weaning

from the drug, that may be the reason your

husband was put back on three times a day,

now he may need another adjustment till he

gets all the tests done and see the doctor.

Ask the doctor after you finally have the

results of the MRI if a very low dose of

decadron would be needed.

Good luck with the machine on the 25th and

hope or good results.

Jackie

[CharlieD]

Linda,

I'm also trying to get off steroids, Decadron, for the second time. The first time about a year ago it took about two months. This time is worse. I went back on them during a Phase I Clinical Trial to give me energy and help the appetite. It worked, but getting off is difficult.

I was taking 2mg pills, twice a day initially and got down to 1mg every two days and don't seem to be able to get rid of them completely. On the 3rd day without them I get extremely fatigued and short of breath. I feel good just two to three hours after I go back on them. Weight gain is another problem since they induce the appetite and all I want to do is eat. The Doc says that my body should be able to take over and function without them, but it is aslo possible that a small dosage may be required permanently.

Sorry Linda that I haven't helped you much, but maybe someone else has had some experience they would like to share.

Good luck with it.

CharlieD

[antoinettev3]

I'm sorry that your husband is having a hard time with weaning off the steroids. I can commiserate. I'm still suffering the after effects and it's been 5 months since I stopped taking Decadron.

The worst for me was joint pain in EVERY joint in my body not just the ones that were giving me trouble before I started the med. When I would try to walk I felt and looked like my 96 year old granmother. Thankfully the symptoms do ease up but it's slow and subtle.

I'm still trying to lose the 40 pounds I gained in 6 months. So far have dropped about 1/2. Blood pressure has returned to normal and all the edema I suffered in my limbs and belly has also cleared up.

I asked the same question too regarding long term use and learned first hand why you can't. As good as it feels and I mean I felt great when I first started on the Decadron the side effects quickly start to outweigh the benefits and the long term damage to our bodies is pretty bad.

I pray that the test results will bring good news.

Antoinette

[SLT]

Hi Linda,

My Dad is in the process of weaning off steroids at the moment, as well. He just finished WBR last week. Although steroids are great for reducing swelling in the brain, it really does come at quite a cost to the rest of the body. Dad's muscles ache and cramp a lot and are much weaker than they used to be. We were told that the steroids cause the large muscles of the body to deteriorate and it gets worse the longer you are on them. The worst affected muscles are those in the thighs, calves, and upper arms. The Dr. told us that once dad is off the Decadron, that if he starts walking and doing physical activity, the muscle mass should begin to repair itself. Dad is just now reducing his dosage and the oncologist told us that if dad starts getting really bad headaches, to go back to the previous dosage for another week as it isn't enough to help with the swelling from brain radiation. Dad has also put weight on and it's a funny thing...the weight has him looking so healthy but his body is completely exhausted from the radiation. Looks sure can be deceiving.

Good luck with everything.

Sherri

[hollyanne]

Hi -

We weaned my mom off the Decadron/Dex very, very slowly -- she started to get pain back when we hit the 3mg level -- our oncologist basically said that they so helped her quality of life (she had no real side effects other than the round face) that it was worth it to keep her on them. Long term use can lead to severe weakness in muscles, bone thinning and eyesight problems.

If the specific cancer is causing a lot of inflammation (whether in the brain, or in my mom's case in the spinal area) these steroids are amazing. There are definite trade-offs....yet I think that pain control still needs to be the number one priority for most people.

Praying that the brain scan shows good results.

Holly

[lindy]

Thank you for your replies, makes me feel better knowing we aren't alone even though I wish none of you had to go through this.

I think I have him talked into having a pet scan too. At least we would know if it's anywhere else at this time. The doctor said not all cancers will show up, some are to small. Ugh!

[carolhg]

I have not had steroids since my last adjuvant chemo in September. The only steroid that I had is what was put in the IV before chemo infusion. I had six sessions of chemo before surgery and two much stronger sessions of chemo after surgery. I gained almost 40 pounds and I cannot believe that I have not lost that weight because I have not had any steroid or chemo since September. The doctor told me that the weight gain is a combination of the medication and the fact that I am a 57 years old.

[karen335]

In the process of weaning off decadron now. Had brain surgery 4 wks ago. Was on the steroid since Nov. 05...

Down to .25mg per day almost off... YIPPEEEEEE, gained 25lbs and bad tude.. YIKESSSS!!! SORRY~~~

Getting a whole lot nicer and skinnier. Soon to be back to myself. HOORRAAAYYYY.

Was on 2mg per day for 4 months (Edema in brain, then had surgery to remove ONE brain met) Down to 1mg daily for two weeks, then 1/2mg daily for 1week, now .25mg daily for 1 week. quit next week.

Don't do this routine, ALWAYS check with your doctor. All individuals are different. I am NOT a doctor. This worked for me...

Karen