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Prednisone

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

Over the past several months, I have had numerous flare ups of a seeming allergy--to something. It would manifest as big red lips and chubby cheeks. And I mean BIG red lips. The movie stars and their silicone lips don't hold a candle to mine. 

I was finally referred to an allergist/immunologist. Yesterday because of my current episode, this doctor decided to do some blood work to check for an auto immune disorder. Yay. My poor immune system, which always supported me so well and has kept me healthy all those years, seems to have taken a beating from my lymphoma and the treatments for it. 

Yesterday, at my office visit, among other things, I got an injection of 120 mg. of prednisone. Now I am on a prednisone taper--40 mg. for 3 days, 20 for 4 days, and 10 for 2 days. Party! 

I saw this cartoon and thought my co-prednisone warriors might get a chuckle.

Cheers,

Rocquie

Simon24
Posts: 45
Joined: Oct 2015

Hello Rocquie,

   I hope your Prednisone experience won't be too bad and it will quickly reduce your swollen lips.  The only thing my husband really complained about with R-CHOP was the vile taste of the Prednisone. It never increased his appetite although we heard that many people gained weight with it. Actually,  I kept hoping the Prednisone would make him want to eat more.  I loved your cartoon.  He only regained his appetite after R-CHOP and Methotrexate treatments were finished.  We didn't even know they could inject it. I hope your immune system will calm down soon and you won't be bothered with any more flare ups.  Best regards,    Simone

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

The prednisone tablets I am on now are 20 mg. They are smaller and not as chalky as those big bitter 50 mg-ers we got with R-CHOP. They don't seem to have a taste but yes I do remember that awful taste. The injection I got was actually Solu-Medrol, which is a synthetic prednisone and is supposed to be faster acting for acute flare-ups. 

I hope you and your husband are both doing well. Do you know yet what is next for him?

Blessings,

Rocquie

 

 

Simon24
Posts: 45
Joined: Oct 2015

Hi Rocquie,

   I am glad your prednisone tablets don't taste bad and hope that your flare-ups will go away soon.  My husband had a visit with his oncologist today and they did bloodwork, CBC, CMP, and LDH.  We got a copy of his CBC and while some of his blood counts are still out of wack they are moving in the right direction. I hate to admit it, but I am a fanatic about comparing all of his tests with his previous tests.  I am waiting for his Hgb and RBC to move to the normal range.  He is getting closer.  His WBC count is 4.2, but not far from the normal range either.  We won't get the results of the LDH and CMP for a few days.  The doctor did not seem concerned about his bloodwork. They also flushed his port.  He will have repeat bloodwork in March and will have a PET/CT scan in April.  He just finished his radiation in early January so its probably a good idea to wait with the PET/CT scan unless the bloodwork warrants it. 

Wishing you all the best and hope to hear soon that your flare-ups have gone away completely.                Simone

lindary's picture
lindary
Posts: 688
Joined: Mar 2015

I love the cartoon although when I was getting the prednisone as part of the R-Chop it did not make me hungry but I would have a few days of feeling enegized. Then 2 days after stopping it, crash time with lots of sleeping for a couple of days. 

I do hope it helps with whatever is causing teh swelling.

 

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

I wish the prednisone didn't make me want to eat the house, but alas it does. I have been thinking about food all day and what I will have next. Right now, I'm thinking about a stack of pancakes. Smile

The taper, where the dose is lessened over a few days is supposed to prevent the crash. I don't know why they give those big doses and suddenly nothing during R-CHOP. 

I will be praying for you in these next days as you go through more testing, etc. to come up with a new care plan. 

Hugs, 

Rocquie

 

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

So, we had a snow storm. We had about 15 inches of snow at our house. It was beautiful. I had gone to the grocery store, along with everyone else in town, and bought enough food to last for a few days. We live close in to our town center and are on the same power grid as the fire and police departments, so we almost never lose our power. If we do, it's not for long.

Because I couldn't really get out, and because I was "enjoying" being on prednisone, I have been cooking and eating for days. I have made pancakes, homemade applesauce, split pea soup, focaccia, chili, chicken and dumplings, banana bread, and more.

And about those swollen and inflamed lips--here is an update. . .

Cheers,

Rocquie

Jeff148's picture
Jeff148
Posts: 183
Joined: Apr 2014

At least they match your shirt!! You were such a blessing to me when I was hurting. You look great even with your giant red lips!!!

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

I was happy to see your posts. Thanks for the updates--it sounds like you are doing great. You had a big birthday and accomplished all those physical challenges from your bucket list. Congratulations!  I'm glad to know my words and prayers were helpful to you when you were sick. 

Hugs,

Rocquie

 

MarkPs35
Posts: 7
Joined: Feb 2016

I just had my first R-CHOP treatment last Friday, the 12th, and I've been eating like crazy. This is the last day of prednisone, 100mg/day.  I'm interested to see what I feel like in a few days.  I hear people mention that they crash after stopping prednisone.  At least I can certainly say this hasn't been a dull journey.

Mark

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3411
Joined: May 2012

Welcome, Mark. 

I just typed a similiar response to what this should be, but it "disappeared." If you get two responses from me, it was unintentional. This is a great site, but a profoundly slow IT one, in my experience.

R-CHOP is the most common chemo combination for NHL, so a lot of people should respond regarding Prednisone crash. I never received a steroid, so cannot comment myself.  If you give your age and the strain of your disease,  people can more precisely relate to what you  might expect.

max

MarkPs35
Posts: 7
Joined: Feb 2016

Thanks Max,







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I 'm 51 and was just diagnosed with stage 4, follicular lymphoma, grade 3 a little over 4 weeks ago.  A lot has been happening in the last month.  I’ve been trying to learn as much as I can – there’s been a lot to take in. 

Anonymous user (not verified)

i had the same diagnosis over 4 years ago. Learn a lot but be skeptical of a lot of things you see on the web. It is very treatable. Best of luck and I am sure the people on here will help with info you may need. Just be as specific as possible with your questions.

Rocquie's picture
Rocquie
Posts: 838
Joined: Mar 2013

Welcome to the group. I hope you will find the information, support, and even humor you need to help you through your lymphoma journey. We are a diverse group but because we all have one thing in common, it works. 

I was diagnosed with follicular lymphoma and had 8 treatments of R-CHOP.

As far as the prednisone, not everyone becomes ravenous (I did) but most will agree on the crash after five days of a high dosage of it. It also coincides with the beginning of our nadir, when the blood counts are the lowest. You may or may not (I did) need Neulasta shots to boost your white blood cell production to help prevent infection. You may or may not (I did) need blood transfusions for anemia, which helps bring the energy level back up.

As time moves forward, you and your medical team will figure out how to deal with any side effects you may experience. Remember to report any concerning symptoms, especiallly fever, right away. And don't be shy about it. 

Again, welcome to the group. . .

Rocquie

 

MarkPs35
Posts: 7
Joined: Feb 2016

Thanks for the support.  My WBC has been low for a while now so I was started on neulasta the day after my first chemo. Today is day 5 after my first R-CHOP.  We'll see....

Sorry you had to go through 8 treatments.  I'm hoping for only 6!

Mark

Sal0101's picture
Sal0101
Posts: 127
Joined: Sep 2015

Hi Mark,

The prednisone crash isn't too bad once you recognize it.  Tired- yes., crabby- yes, feeling of doom- yes.  I realized I needed rest and believe me I am not a good napper.  I'm still not.  As far as the appetite, I'm not sure If it was the prednisone, or the fact that I always ate healthy and exercised before I was diagnosed, so I decided now I could eat everything I liked! Probably not a good way to look at it, but it made me happy! 

The neupogen/Neulasta was the norm for me.  I was switched to Neulasta after the  2nd treatment because I was requiring too many neupogen shots. I never could keep My WBC up. Claritan and Tylenol worked for the bone pain, along with a heating pad.  After the first one it was only a minor problem.

I had 6 rounds of r-chop with 3 methotrexate sessions.  Had my PET yesterday and am nervously waiting for the results. 

Sharon

DLBCL 4b Age 58

 

lindary's picture
lindary
Posts: 688
Joined: Mar 2015

The prednisone crash hit me hardest the first time because i didn't really expect it. I was feeling so great and then the second day after stopping the prednisone I couldn't stay awake. I'd lay down for 30 minutes and wake up like 2 hours later. So for the second cycle I made sure I took a nap the day of the last dosage and the day after that. I still took a nap that second & third day after stopping the prednisone but I didn't feel quite so washed out. 

My oncologist just made Neulasta part of the cycle. Chemo on one day and neulasta shot the next day. Last week was the first time I had neupogen but no one told me about taking Claritin before the shot to reduce the bone pain. I had 3 shots over 3 days and the second day the nurse told me to take the Claritin. I am keepin the remaining Claritin handy since I will be getting neuprogen shots for several days before they harvest the t-cells. The Claritin will come in handy. 

Good luck Mark with your treatments.

GeophB
Posts: 3
Joined: Apr 2016

Round 2 R-CHOP  I gain 7 pounds water weight the first day but it then slowly comes off.  Sounds like Prednisone makes some people hungry but for me it makes me feel bloated and like not eating (unless that's the R-CHO).  It also disrupts my sleep a lot so I take it first thing in the morning to minimize that.  I am very happy when I take my last dose on day 5!

Crash?  What crash?  I guess everybody's a little different.

The nurses tell me to take Claritin for 5 days, and it must work.  I only feel bone pain for a few hours on day 8 in the sacrum area.  Feels like a sore back, not too bad.  I figure that must be the Neulasta starting to kick in and crank out those neutrophils.  I will swear by Neulasta though because my WBC goes below 2 and my body temperature does a "roller coaster" thing for several days and I already did a precautionary hospital stay for a neutropenic fever on Easter weekend of all the luck.

When I go out in public now I feel like Neo in The Matrix.  Anyone around you can instantly become "an agent of the system" with a sudden cough or sneeze.  With my sinuses, I have always been a human petri dish!

lindary's picture
lindary
Posts: 688
Joined: Mar 2015

I never had a problem with the Neulasta shot after the R-Chop but when I got the neuprogen I used the Claritan to avoid the bone pain. Reading your experience it goes to show how different we react to the same type of treatments. 

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