antoinettev3 Posted July 6, 2005 Share Posted July 6, 2005 I have been on Decadron 2 mg /day since April for inflammatory pain from my cancer and have decided to wean myself off the drug because of the side effects. The pain relief was excellent and before cutting back on my dose I was relatively pain free and rarely needed my BT meds (5/500 Hydrocodone). Since cutting back to an alternating schedule of 2mg/day, 1mg/day I've had a lot of flare in pain. The BT meds are not touching it on most days. The pain is more spastic then anything else and it feels as though a good muscle relaxer would be more appropriate. I am seeing a radiation oncologist on Thurs. to see if that might be an option to manage the pain and I have my follow-up with the PM doc on Friday. Anyone else out there who has been through the whole getting off of steroids thing? How long did it take you and what was it like? What type of pain did you experience? I am having a LOT of trouble with gas and bloating and have been told that the Decadron is to blame for this as well. I thought that it would get better with the reduction in dose but it actully is worse. Anyone else out there have troube with that aspect of it? Any and all repsonses will be greatly appreiciated. I find myself not being able to function very well on the days I take the lower dose. Today I had to take 3 LONG naps because of the increased fatigue and the pain. I know that there is going to be a time of adjustment but I'm trying to get a feel for how long before I see the light at the end of the tunnel. My oncologist tells me that I should find myself starting to break free of the side effects once I get the dose down to .5 mg a day. Unfortunately I can't get down to that dosage fast enough because of the flare in pain. I'm suppose to cut back my dose next week to alternating 1mg/day, .5/mg day. With the amount of pain I'm experiencing now I can't imagine how awful it will be on the lower dose. Would a long acting med work better then the Hydrocodone I'm using now? Right now I take OTC meds, the hydro when needed and use a heating pad or ice pack to manage what's left over. The only thing that seems to work other then the steroids is sleep when I can get it. Hope there's someone who can shed some light. Thanks in advance. Antoinette Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 7, 2005 Share Posted July 7, 2005 Dear Antoinette, My personal experience with Steroids is all short term usage (before, during and after chemo infusions; for up to a month but dosage progressively staged down for respiratory inflammation or severe Crohn's episodes; for a few days before having scans that require certain IV dye. Every one of my doctors has told me that I should never attempt to discontinue steroids without physician supervision and agreement. It's dangerous (adrenal insufficiency is just one of the things that comes to mind). You need to discuss this with your Physician, sooner rather than later. Having said that, I would also like to say "Welcome". Quote Link to comment Share on other sites More sharing options...
Don M Posted July 7, 2005 Share Posted July 7, 2005 Antoinette: My experience with steroids is limited to just what I have been taking during chemo. I can't offer much advice, but would like to welcome you to this board. I am sure you will get some good input from others. you might try the "ask the experts" section. Don M Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 7, 2005 Share Posted July 7, 2005 When I come off the steroids, I have been advised to increase the non-steroid anti-inflammatories. NSAIDS. Pick your favorite; right now, mine is naprosyn or naproxen. Also was given a prescription by the physiatrist that is an unusual medication. My understanding is that it is for relieving muscle cramping along with pain relief. It does make you drowsy a bit but not as bad as some. The name is Tizanadine. Welcome! Good luck with all that is in-front-of you. cindi o'h Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted July 7, 2005 Share Posted July 7, 2005 My husband's onc is weaning him off steroids. He went down from 8 mg to 1 mg over 6 months. Now he will be taking 1 mg every other day for the next two weeks as his body starts producing natural steroids again. Then he will cease completely. When a patient is taking steroids the body senses the chemicals and ceases its own production. This is why it must be done under a doctor's supervision. Best to you in your journey. Trish Quote Link to comment Share on other sites More sharing options...
Patkid Posted July 7, 2005 Share Posted July 7, 2005 Hi, A, we have nothing to offer relative to steroids, but wanted to welcome you warmly. Pat and Brian Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted July 7, 2005 Author Share Posted July 7, 2005 Thanks for the warm welcomes. Just wanted to clarify that I am doing this under the supervision of both my oncologist and pain doc. I wish I could just stop taking these pills and be done with them but know that an adrenal crisis is a VERY dangerous thing. Cindi o'h: I will inquire about the Tizanadine. Muscle cramping seems to be one of the biggest problems I'm having. Trish: How did your husband feel going from 8mg to 1mg a day? Did he supplement with other pain meds? I at one time was on 4mg/day which gave me complete pain relief and enough energy to run a marathon! Wish I could stay on that dosage w/o the side effects. Thanks again for the replies. Antoinette Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 7, 2005 Share Posted July 7, 2005 Thanks for the explanation. The signature line is a huge help in letting us know how you came to be where you are. I am very relieved that you are decreasing the steroids under doctor supervision. I was concerned when I thought you were doing so on your own. Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted July 7, 2005 Share Posted July 7, 2005 I would like to welcome you, but not much experience w/sternoids. My sister and daughter have had the experience and do everything w/ Dr.s advise. Mare Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted July 7, 2005 Share Posted July 7, 2005 Hello again, Antoinette. Please check your mailbox for a pm from me! Cindi o'h Quote Link to comment Share on other sites More sharing options...
schmaydee Posted September 22, 2005 Share Posted September 22, 2005 ...i'm a little late... but the very same thing has happened to me...(and still is). i'm still at .5mg a day. i started in Nov. (i think) when the pci treatments made me sick (12mg/day). i have tried to taper off 5-6 times and would get violently ill when i stopped taking the decadron. i have been doing really well since june (except when i tried to quit the steroids) until last fri....i had a kidney stone...and they found a "mass" on my adrenal gland.....gotta go for a biopsy tomorrow... what i'm trying to say is, really watch the adrenal gland thing and if you start getting sick when you quit take a pill....dont try to tough it out.... .....s Quote Link to comment Share on other sites More sharing options...
marym Posted September 27, 2005 Share Posted September 27, 2005 Antoinette, I was taking decadron for about 2 months - 12 mg a day. I got off in a week, per docor's instructions. It was awful. I ached severely, my feet were so swollen, I had difficulty walking. I was given celebrex and I already was on morphine. And was given a diuretic. (which caused a loss of potassium that was quite dangerous and required a iv treatment and pills for the next week). The withdrawal lasted quite some time - 3 or 4 weeks. Another side effect I had was growth of facial hair. I gained no weight, but was puffy. No one had warned me of the withdrawal symtoms, so I was really surprised. Good luck with your withdrawal. Insist your doctor provide whatever is necessary to control the pain. Mary Quote Link to comment Share on other sites More sharing options...
pammie Posted September 27, 2005 Share Posted September 27, 2005 Antoinette, haven't had your exact experience. Did take IV solumederol for the MS and then had to do the down dosing on oral steroids. My problem was that I could not sleep and everything was magnified so I was sensitive to all sight, sounds and feelings.What other pain relievers has your onc tried? Mucsle relaxers can be very helpful as one person suggested. You are in my prayers. pammie Quote Link to comment Share on other sites More sharing options...
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