CSN Login
Members Online: 2

You are here

Coronavirus/COVID-19

What cancer patients, their families, and caregivers need to know about COVID-19.

Prednisone ?

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

In the morning I won't be taking the prednisone. I've been taking 60mg a day since Tuesday when I had my first round of chemo. Tonight I've been reading "everything" I can find on abrupt discontinuation of prednisone and I'm not liking what I see. It's 12:26 here on the West Coast so maybe by the time I get up in the morning one of you can tell me if you have ever done this..abrupt stop(60mg) and what you experienced. I'm seriously psyched out right now. Not one article said it was a safe thing to do and all of the articles said terrible side affects could happen. Talking about breathing problems...racing heart...all kinds of creepy scary stuff. I don't think hubby will agree to sitting in the hospital parking lot all day waiting to see if I crash, so hopefully someone here can put me at ease. Sure hope I'll fall asleep now. Night
Sue

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,
yse I am still awake and reading posts etc. You sound so scared right now. I wish I had some words of wisdom for you. I can say, you will feel better being off the devil pred. I know when I stoped using it, it took about a day and a half to feel free of it. I don't remember the dose I was taking, sorry. Try to not read about all the bad side effects, so far you have done great, so think positive. You will continue to do great.If you are still awake and reading, send me a response and I'll send you some more too. Hang in there
Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lisha,
I tried laying down, but my brain was racing, so yes...I'm up...now it's 1:36..UGH!
I've been stressing about this since early this evening and even though I told myself not to do it...I did the "Bing" search on "EVERYTHING" to do with prednisone. I know...I said I wouldn't do that anymore, but "NEVER" in my life have I taken 300mg of prednisone in 5 days. The highest dose I ever took was 30mg a day with slow taper down over a 2 week prescription for a bad bout with bronchitis a year ago. Man...that was wicked enough and I didn't have to just STOP it...bam! I just had a simply wonderful day and felt so good, but in the back of my mind I couldn't put to rest this sudden stopping of the pred in the morning. It just got the better of me as soon as my hubby padded off to bed. Sorry to be such a pain in the butt about the prednisone, but I just H-A-T-E it!!!...Of course I'll survive...I just can't deal with racing heart..shortness of breath and chest pain...absolutely puts me a tail spin and I just go into full bore panic attacks. UGH...
Love...Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I have gone thru 4 rounds of 100mgs of pred. in the morning. I really had no side effects except it plugged me up during and for about 2 days following. It did not make me crazy, at least no crazier than I already am,hahahahaha. I did not read the websites that point out some of the side effects it could cause either. I didn't know it could cause effects by being on it for a short period of time or I would have been on those sites checking everything out. I know everyone is different in the way they react to all this stuff,so I guess I lucked out so far with prednisone. Just watch out for that bus though. They come out of nowhere sometimes. Just hope it passes by your house and don't stop. The first sign is you will feel wore out but not sleepy. Its kinda hard to explain,but IF it hits you then you will know what I mean. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

The bus arrived around 4:00...man John...you called it "dead on"! Started out with a gradual slowing down and then wham. I'm not having any breathing or racing heart issues,just a whoozy kind of feeling. If I get up too fast I feel off balance, but not actually dizzy or light headed. I ache from the butt up.(feet and legs feel great). Buttocks, shoulders, neck, ribs,and upper arms ache like I've been kicked or suckered punched from all sides. No accute or piercing pain....thank goodness. No headache, but my head feels heavy if that makes sense...kind of like it's too big for my body. My throat feels a little bit sore and sratchy but I've got some peppermint lozenges that seem to be helping....(my teeth tingle off and on which is soooo strange) My eyes feel fat and hard, but my vision is fine..(sounds weird, huh?) Oh...my port feels sore and it hasn't bugged me a bit until today...now I "KNOW" it's there.(not painful just sore)...too strange. Well...the rest of the evening should be interesting, but honestly...if this is as bad as it gets and I keep breathing good and my heart rate doesn't change...I'll do just fine...(knock on wood). Ooook...I'm going to ride this out...ha! Might check back later....Thanks all....Sue

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,
Just want you to know that I'm sending you tons of positive energy. Use it to get through the next couple of hours. I'll send you some more later on. Thinking of you..
Lisha

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I was hoping the bus would pass by your house and forget about you. I know just how you are feeling. You are tired but not really sleepy. Sort of like somebody zapped your energy while you weren't watching. Well,something did zap it and its called chemo. It takes time,but seems to get around to us sooner or later. The chemo is killing those bad cells like crazy,but it is killing those good ones too. The rbc's are the ones we really notice. They carry the food and oxygen thru out the body. When they drop is when we know it. Less food and oxygen and we start to slow down and feel tired and achy. They will build back up,but not over night. The bone marrow has to make the new cells. As the blood counts start to go up we notice we start to get our strenght back. If you start to have any breathing issues call the onc. team right away. It could be other things causing it, but the main concern would be the RBC's. If they get to low then you would not be getting enough O2 to the cells. That can also lead to headaches. Just signs to watch out for. Thats why I don't understand why you were not given the nuelasta shot. I know the blood counts before chemo are taken into consideration,but my counts were very high and I was still given the shot. I know a lot of factors are involved when the effects of chemo set in, but we got to keep in mind the blood count issue. You will be fine. We all go thru this in some degree or another. You did so well the first few days so no reason to think any different now. Just take it easy and don't overdo anything. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wow, I was hoping you were home free. Damn. Sorry you hurt so bad, but everything you describe is about right.

I had jaw pain from the vincristine. It almost felt like I was getting an electrical shock in my jawbone. I had trouble eating and drinking and just in general pain everytime I would think about food and start salivating. It was horrible for a few days, but thankfully didn't last but for a few days.

I also hurt from the butt up, my legs were fine. My back felt like it was breaking. I would lay on the couch, then have to get on my knees and stretch my back up like a cat stretching. It just hurt everywhere.

Take heart, the worst is the first. From then on out the side effects are pretty much the same but at least you know what to expect. Try to rest when you can. I was told that exercise would help. I was too wimpy to try it, but walking kind of helped stretch the muscle aches out.

What helped me was watching chick flicks..preferably 1/2 naked hotties like Matthew McConnehey (sp), Nickolas Cage LOL.

Take care honey,

Beth

JeannetteAnn
Posts: 6
Joined: Sep 2010

I have been on varying doses of Prednisone for approximately 13 years. I have only done tappering down method as I was always told it was the only way to go. I do take it for rheumatoid arthritis however and I know that if I go off or down too rapidly, my joints start to scream at me. 60mg. is an extremely high dose and I just would never dare to just drop off of it. The tapering down is the safest. I will do a burst occasionally for a flare of RA. They will take me up to 20mg. for a short time, then gradually take me down each day for about 1-2 weeks. Better safe than sorry is my motto. Hope this might help you. Jeannette

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jeannette and welcome!(I'm not at my best tonight...sorry for the first impression of crazy lady concerning pred med"!)
See...even you say you "WOULDN"T" just drop it off...thats what "every" article I read tonight said. I don't have a choice becasue that was the orders from my cancer doctor. I have to trust her...right? I am not usually a psyched out person...believe me...I try to stay up-beat and positive as possible, but me and prednisone are NOT friends!...ha! From day one of hearing that prednisone is involved in my chemo protocol it's been like a small dark cloud always hanging close by for me. thanks for responding...that was sweet of you. I can't help with your Rituxan questions because I just had my first round on Tuesday and so far it's only been the pred messing me. Someone else here will jump in as soon as they get up. The sane ones are in bed right now...ha! Love...Sue

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Sue,

I hope you don't crash, but my onc had me taper down. I started off with 100 mg a day for 3 days, then drop to 80mg, then 60mg, then 40mg, 20mg. So mine lasted 7 days instead of 5. When I asked if I could drop to 5 days he said I could, but I'd crash, and the choice was mine.

If you do have trouble, just talk to your onc. Maybe she'll let you taper down. All you can do is try. I've seen posts where quite a few of you guys are left to stop suddenly and I just shake my head because I don't get it.

Hopefully you'll get some sleep today since you aren't sleeping much last night.
Take care,
Beth

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey Sue talk to your Onc, like I said before I'm taking 5 pills a day for 5 days, had problems crashing when I stopped, so she made me take one pill for two day's and then cut that to half a pill, for two more day's. Give your doc a call....... Vinny

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sue,

I've completed 4 rounds of R-Chop and have taken 100 mg. once daily for the first 5 days following each treatment. No weaning at all. The RN part of me is still shocked that there isn't any weaning. I found it easier to tolerate than the weaning doses that I've taken with bronchitis. I do suffer a crash of tiredness, similar to what John had posted. Please call your doctor before you make any changes. Good luck to you, I'm sorry that this issue is so stressful for you. If I could take it on for you, I would. Kellie

yesyes2
Posts: 592
Joined: Jul 2009

Hey Sue,

I hope you are feeling less stressed this morning. I was on 70 mg per day as I refused to take 100 mg because of another health related issue. Other than being extremely fatigued I had none of the symptoms you wrote about. And I attributed the fatigue to the other chemo drugs. How could you know what was causing the problem because of the cocktail. Besure to talk with you doctor about your concerns. You should be seeing him this week for bloodwork right?

Take care, Leslie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Leslie,
Yes...I go to my doctor on Tuesday..10:30 labs and 11:00 to see her. I slept in this morning...(9:30) because I didn't fall asleep until 3:30. Last night I finally had to take a warm bath to calm down and get relaxed, but as soon as I did that I fell asleep in my chair. So far so good this morning. I don't feel weird at all, but I would think the crash part would come later as the pred is exiting my system. I'm ok, and I apologize to you all for getting so psyched out. I can take aches, bumps, bruises, etc...but when it comes to breathing problems, shortness of breath, racing heart..I automatically start to panic...even if I'm not having any symptoms...just the thought it "might" happen spins me out. Thank you all!!! BTW we won't be parked in the hospital parking lot all day, but I do have my shoes sitting by the front door and I have clean undies on...just in case!!...ha!ha!ha! Hope we "ALL" have a "GREAT" Sunday.
It's my oldest sons birthday today(41).
Love...Sue

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,
I'm glad you made it through the night, even if if was somewhat choppy. I agree that if tomorrow you are feeling weird, do call and ask the Dr. Of course if you feel really out of sorts today, call today.
I too was up and down most of the night. I think I was alseep around 4:30. Lame! Now my whole body clock is really messed up. It feels like it is morning, but it is afternoon.
Have a great birthday with your son.
And I don't think your a crazy lady, just a woman with cancer and questions and concerns.
No question or concern is to weird or crazy. Anything goes when you have cancer....
Talk to you later,
Lisha

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi - just finished my 5th of 6 rounds of CVP-R and I haven't slept in months more than 2 or 3 hours a night, even with prescription sleeping pills. My Oncologist says you do NOT taper Prednisone with Chemo - 50 mg. each morning and night for 5 days of each 21 day cycle. 100 per day - never did it that way but he's brilliant and with a large cancer teaching hospital, so have to trust him and I do. SO happy to have my last of 6 on Sept. 14. I'm told the chemo drugs stay in your system for 6 to 8 weeks, I can expect to be fatigued for 6 to 8 months. Will have another CT scan as well as a second Bone Marrow Biopsy in mid October to find out where Remission is. He says my tumor in abdomen is so large, we'll be lucky to get 85 - 90%. I have B cell, follicular, Indolent, stage 4 HNL. Good luck and God Bless us ALL!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I know you have probably said before, but how large were your ab tumors. Mine were 5 and 6 cms. I don't know if they ever really shrink up to normal size again. Can we still have remission even though they don't shrink up to normal size again? I don't want to sound dumb,but I do not know and the only way to get answers is to ask,right? I had my midway scan after round 3 and the tumors were still there. No mention of size, just SUV (sugar uptake value),which was down from 9 to 3 at the halfway point. Go for round 5 next week. John

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,

I really feel for you - been reading all those posts what you had been through. You are truly a remarkable survivor!! Glad to hear that you are feeling better somewhat. One thing I like knowing is that after the treatment, each day would get better or within few days.

Had my 2nd chemo today and am bracing for the side effects to arrive soon. Thank god my hubby is supportive. I pray - I pray - no racing bus please!!

Hugs,
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz,
I hope you get to enjoy your evening before anything goes bump! I kept you in my prayers all day and will continue to do so. I'm gald I have a couple of weeks to relax before my next round. (I'm sure you all will be glad to have me realxed also)...ha! Geez..I got soooo wired....ha! No pred for 2 weeks..."YES"!..ha!
Love...Sue

Subscribe to Comments for "Prednisone ?"