Steroid Problems

[chelsmom]

Hello,

Has anyone that has been on Decadron had long lasting effects???  Chelsea has been on and off this stuff since last June.  Most recently she was on it during radiation for 4 weeks and did a 25 day taper off.  She has been off now for 5 weeks and feels terrible.  Everyday she has nausea, some vomiting, occational headaches, all over aches and joint pain which completely robs her of energy.   We've been told that these are all part of coming off the steroids and that as soon as her adrenal glands kick into gear she should start feeling better.  The doc said that if she doesn't feel better in the next couple weeks they want her to see a specialist.  Anyone have any of these problems so far out from discountinuing the Decadron??  If so, was there anything that helped get you back to normal like diet or supplements??   Thanks for your help.  Michellle

[chrissmom]

Chris had terrible sweating problems while on Decadron. The sweat just poured off of him.  It made him weak and he felt sick.  We had to keep him hydrated.  The worst effect however, were the Infections.  Decadron made him suseptible to infection and he developed a bad one following the first surgery to get the brain tumor.  He needed emergency surgery to clean out the infection, later he developed an infection of the spinal fluid both of these incidents kept him in Neuro-ICU.  After that, they decided to not give him the drug and to let the swelling go away on its own. When the shunt failed, they were afraid that he would need another shunt  but later they found that it wasn't necessary.

[jerseygirl]

Michelle,

I had a 6 cm tumor removed 18 years ago and was sick for years: nausea, vomiting, headaches, fatigue, the works. I was on steroids for 10 days and felt great but when they were discontinued, things started. I was told that steroids make you feel great and mask (not treat) any side effects one might otherwise feel. I don't think it is the lack of steroids that made Chelsea and I feel so bad, I think is is the size of the tumor. At 6 cm, the brainstem is very affected; mine was "compressed and rotated". Brainstem damage is known to cause nausea. Maybe, it is reacting to the need to return to a different position due to the fact that the tumor is removed. For Chelsea, it is possible that it is also reacting to the radiation treatments. How did she feel between the surgery and radiation?

Anyway, what helped me most is acupuncture, it made me feel great after every session. I had a series of 10 treatments every half a year or so and wish I had discovered it earlier. It might be worth a try for Chelsea. Try to choose a practitioner knowledgeable in herbs because there are quite a few that help. I tried ginseng when I was particularly exausted and my blood pressure was low and it worked wonders. In terms of other supplements, I am not sure what specifically helps but I would think that a poor diet and lack of vitamins and minerals would make you feel worse and delay healing and so would lack of sleep. I know how hard it is to eat healthy food when you are nauseous and vomiting. I hope this helps. I have been following Chelsea's story and admiring both hers and your courage!

               Eve

[chelsmom]

Hi Guys,

Thanks for the response.  Chelsea's symptoms are not getting any better.  I'm going to call the doc today and get her in to see the edroconologist (sp) as soon as possible.

Eve, sorry to hear you had such a rough time.  In Chelsea's case she felt fine after she came home from the hospital where she had been weaned from the decadron and before radiation when she started taking it again.  Now it's a matter of finding out if she is dealing with what you described, brain stem area changes, or the possibility that she developed Cushings disease or ?.

I'll keep you posted..... Thanks,  Michelle

[Dealy]

This is not about me put about Decadron-very potent. My wife's aunt had GK last fall for a 3.5 mennginoma. They kept her on Decadron till xmas time. She had no energy-her feet were numb all the time Her bones ached constantly. So they put her on predisone-and a lower dose. I was on predisone 5 times since my initial radiation treatment last summer and I know it does wierd things to our body. Best wishes-Ron

[jerseygirl]

Best wishes to Chelsea and I hope she feels better soon!

                              Eve

[Crazycat]

Michelle,

    I had an enormous growth and was on Decadron (Dexamethasone) 10 days before surgery (by pill) and immediately after surgery through the I.V.. In my case, no real bad side effects to speak of. It was the Morphine that I had problems with. My doctor told me that I had a bad reaction to it and it put me in a coma.

  I'm sorry to see Chelsea having to go through all this.

       Paul

[pearchica]

Michelle: hope you and Chelsea will have a better 2007.  I can't really comment on decadron other than my own limited experience- I only had 3 pills total (1 each day after CK treatment -Wed-Friday last week).  I am slowly coming off the "high" of the steroids- they did make me active which was a great side benefit for a full weight adult- but sounds pretty horrific for a child. I did have trouble sleeping at night but was told this would be a side effect. I'm really sorry that you folks are having a rough go- please know that you are in my thoughts and prayers. Take care, Annie