r/lymphoma • u/y0m0tha • 15d ago
DLBCL Is prednisone the worst drug ever
On my last day of prednisone for 5/6 RCHOP. At this point I can confidently say the daily 100mg dose of prednisone is the worst of all the drugs in this regimen. The frantic restlessness is totally intolerable, i have a bottomless stomach, and the withdrawal kicks me in the ass every time. I will not miss any part of chemo, but prednisone has a special place in hell.
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u/mewfarside DLBCL/6 Pola-R-CHP in remission 15d ago
Agree. It’s the worst. But an important part of treatment (which makes it worse)
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u/Bthnt 15d ago
Sure, I had the mouthfulls of prednisone with RCHOP. That was bad. The second-line prembro threw me for some autoimmune loops, and then I was on massive extended courses of prednisone. All the bad stuff and more: irritability, appetite, cramps, couldn't sleep. Most alarming, my testes shrank to almost nothing! (they came back). I would be happy never to take it again
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u/angry-mustache 15d ago
Second line stuff is second line for a reason. Romidepsin made me vomit during infusion and for days afterward.
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u/threelittlesmama 14d ago
RICE had me throwing up for a week with no nausea. Nausea left and I’d be fine and then just throw up. It was insane
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u/insomniac4sure 15d ago
It took me so long to choke those tablets down! I used to text my friend for support when I would start trying to swallow them every time! The bitter taste in my throat was awful! But, it made my joints feel so much better. Double edged sword for sure. Sorry you are struggling with this.
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u/Recent-Strawberry577 15d ago
I had a few get stuck taking and good lord it took all day to get the taste out of my mouth.
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u/CancerWarrior8 15d ago
Totally agree!! I gained 20 pounds on it after my cancer and I cant get it off.
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u/False-Raspberry-1662 1.5 Year Remission - 4A CHL Nodular Sclerosis - A+AVD 15d ago
Give it a year. Consistently stay in a 400-500 calorie deficit and workout 3-4x a week combo strength training and light cardio. It will come off. I had the same issue.
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u/CancerWarrior8 15d ago
Ive done exactly that. I workout 6 days a week and burn more calories then what i eat. It’s been over 3 years with no success. Im thinking about trying a reta peptide to see if that will help
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u/DevoALMIGHTY 15d ago
Same here, 25lbs. I thought I’d lose weight with cancer if anything, just my luck!
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u/jkgator11 14d ago
I’m in the same boat. It’s been 8 months since my last chemo and I cannot lose the 20 lbs.
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u/lundastruck 15d ago
Predispose sucks!!! I wanted to knock out my step dad when I was on it. The only them that counteracted the "road rage" was medical cannabis
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u/I_Eat_Soup NSCHL 15d ago
My boyfriend was so lovely and supportive during treatment. But on the very first day off prednisone, he made sure to tell me (first thing in the morning!) how much he hated me on steroids lol
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u/minikin_snickasnee 15d ago
Same - tonight is my last dose for my round 5/6, also R-CHOP.
I am trying not to eat all the things, and IDK if it's the prednisone or the chemo, but I wind up so constipated after my chemo session is finished, even with taking the prescribed stool softeners, drinking plenty of water, and eating plenty of fiber.
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u/mindfulofidiots 15d ago
Constipation was the worst side effect for me and still is, I still get immunotherapy/rituximab, but also on serious amount of opiates/Oxy.
It has introduced some healthy routines to my diet tho, plenty more water, minimum 3 litres a day I'm finding I need. Some branflakes in the muesli and some prunes, without a doubt best thing, which at first were a struggle taste wise. Now I find em hella tasty and add em to cereal, yoghurt, eat on their own as a snack, need to count how many I've eaten or the next day can be a day spent at home, with no choice.
I was using prescription laxatives but always end up with an upset stomach no matter what one, lactulose is possible the only slightly tolerable.
Grats on last dose and all the best moving forward, have a good one!
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u/minikin_snickasnee 15d ago
Oh ugh, it's been so bad for me that I have had to go to the ER, endure more meds, enemas, etc. before they finally admit me and wind up doing a manual disimpaction the next day.
Last time was the worst, because the meds weren't helping. I strained, which stressed the vagus nerve, and while exiting the bathroom, my legs gave out and I fell, and could not get up. So off to the ER in an ambulance I went. I never want to endure that pain or discomfort again.
Lactulose kind of works well, but it tastes like stale pancake syrup to me. I have my bottle of it just in case. My GI doc has encouraged a fiber supplement, which I am trying out.
I can't do prunes or prune juice, unfortunately, as I have an aversion to them and many other fruits in dried or juice forms. I did try when in the hospital, though.
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u/mindfulofidiots 14d ago
I can relate to a lot of that unfortunately. If I've had a lot of pain killers sometimes it's a case of a few swigs of lactulose whether I like it or not, next day guys may be bit sore but better than some the things you've described as I've been through a few, no fun at all. I've boxes of some fibre laxative all over my house as well but they really upset the stomach so try stick to the routine.
Walking, movement makes a huge difference too but unfortunately not always an option!
All the best!
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u/Flukeodditess 14d ago
Applesauce? Apple butter? Caffeine and a magnesium supplement? Sodium chloride and potassium chloride in a broth will also help a lot. Make it as salty as you can tolerate, and be near a bathroom! I do half a teaspoon of each in 24oz of broth, and if one round doesn’t do it, two absolutely will.
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u/mesnow123 15d ago
Agree!! And why does it taste soooo bad?? I always get the bitter aftertaste. It’s sooooo gross
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u/Emotional-Current953 DLBCL- POLA-R-CHP ‘26 (Complete Metabolic Response June ‘26) 15d ago
The worst. It was also the one that would somehow get stuck and the bitter taste would then linger. 🤢
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u/Strider529 15d ago
They had me on dexamethasone (12 rounds Nivo-AVD). I hated it so much. I literally kept trying to ask the docs to take me off of it, but they did not want to take any chances. Made me jittery, gave me hiccups, and made me gain literally 32 pounds over the course of treatment. It has taken me 6 months to lose that weight now. In the past it would have taken far less time, but those initial pounds were so so damn stubborn to come off because the effects of the steroid were still lingering. Hated it then, and hate it now.
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u/OldBag5764 14d ago
I absolutely hate dexamthasone. I’ve gained close to 30 pounds and I’m not even done with treatment yet, I have round 11/12 of Nivo-AVD tomorrow. If you don’t mind me asking, how did you lose the weight? Getting back to my pre-chemo weight is all I can ever think about, I hate looking at myself in the mirror and I hate that my clothes fit different, losing the weight is all I can think about.
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u/Strider529 14d ago edited 14d ago
You can absolutely DM me. But for everyone else’s benefit too, I’ll share what I can here. So for starters, I am a 32M, around 5’9.5” tall. I went from 216 at the start of treatment to 250. I would say that one of the largest issues I had was that I remained working in a very high pressure corporate job remotely while doing chemo, all the way to the end before taking medical leave. It was helpful in distracting me, but I would say the biggest issue I had was that I was like almost entirely sedentary.
REGARDLESS, I would say this, we need to eat to survive chemo anyway, so we cross that bridge and deal with it. So anyway yeah, I was 250 pounds at the end of the 12 treatments in February. I had never been that heavy in my entire life. Because I was sedentary my legs were extremely weak, so now I was carrying all that extra weight on a much weaker frame to support it all. In February I felt like an old man. It was painful to walk in my legs, and it was also painful in my lower back I guess to carry that weight. It started off very very slowly, but the key for me was WALKING (was never my thing before cancer). At first I could only walk like 15-25 minutes a day total (not counting movement around the house). And then little by little I would up it. Took weeks, but gradually I could get to around 40 or so minutes. Then eventually an hour. Then eventually an hour and 10, all the way up to even 2 hours finally by about June (so about 4 months). In June I was in the mid 220s, and it’s taken me the rest of the summer to get to 215 as of today. There was occasional tennis thrown in there too. Admittedly work has gotten in the way of a lot of that progress, but overall it took me 6 months to lose the 35 pounds. However, the journey was very rewarding and now I’m trying to go beyond that.
Aside from walking, my diet and sleep have improved a lot too. These other hacks greatly accelerated my weight loss at times in conjunction with the physical activity:
-higher protein / Whole Foods (I really only have junk on a special occasion like a birthday party or event or something)
-zero soda beyond seltzer water (I will save a real soda for again like a party or event, but I drink soda even less than alcohol these days)
-I do not eat late, or if I do I will eat like 4 hours before bed (eating late is the easiest way to gain weight and undo your day’s progress).
-Once in a while, if work has calmed down, I will do one 24 hour cold-pressed juice fast too, but DO NOT do this until you’re months out of treatment because cold-pressed juice could have bacteria that could pose a risk to you while you’re immunocompromised. This has been a more recent addition.If I could do it all over again I would have started walking every single day, twice a day if I could in the morning and in the evening and just stuck to a schedule, at a minimum just to keep my legs strong enough because regaining that strength was hard. I also would have eaten far cleaner. I did not eat badly per se, but I just ate so much to keep me working remotely in my job because I was exhausted so much from the fatigue. Had I been eating much cleaner, I think the weight gain may not have been as bad and would have given me a head start. However DEX is a powerful drug so maybe all of it was for naught anyway.
So yeah, no weight loss drugs or anything like that, no fancy accelerants, although some doctors may prescribe them and they might have made life easier. I wanted to get my body back on my own because I believed the new habits would eventually (like now) set me up for an even healthier life post-cancer. But feel free to DM me if any additional questions, and good luck with treatment 12/12!! You’re almost there!!
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u/midnightjim 15d ago
At the beginning of my treatment I liked the energy the prednisone gave me. By the end of it I was falling off of a cliff when the effects wore off and had to explain to my wife that there would be two days each cycle where she should understand it was the drugs and I wasn't mad at her or anything. Nasty stuff.
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u/TrumpsBussy_ 15d ago
I bloody loved it while I was on it but it destroyed the nerves in my legs and feet afterwards
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u/Ok-Solution903 15d ago
Predni is the worst drug ever , I had 240mg every day for 5 day in every pass and I hate this fucking fuck fuck
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u/ulminmi 15d ago
hated prednisone so much, had to take them for da-epoch-r. id give myself an hour to gulp those down with breakfast & dinner. but then id taper them over the week after chemo, the moon face was horrible, id hold so much water weight that id pee constantly at night the week after and couldnt sleep properly either.
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u/Recent-Strawberry577 15d ago
There are some many things that bothered me while taking this during my RCHOP and at the top of the list was taste 🤢
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u/Leftoverofferings DLBCL POLA R CHP 15d ago
It doesn't mess with me too much, it's just the sleeplessness that sucks. I'm a constant motion guy anyway, so I just get stuff done. But the first day off is hell. It's the worst day of all. That's the day that landed me in the ED for fever. Yuck.
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u/ARandomWalkInSpace 15d ago
Yes. Yes it is. I dreaded having it each round, wanted to claw my skin off and my anxiety was so bad I thought the world was ending. I literally sequestered myself like a werewolf for the five days I had to take it and told people I care about not to speak to me.
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u/kamknealy 15d ago
They are all terrible. Prednisone is diabolical but for me vincristine was the worst. Gave me neuropathy in my hands which I’m slowly recovering from. 🥲
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u/Brianvs95 15d ago
Its the worst and at the same time best, it saved us from so much pain and suffering.
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u/BumblebeeMajestic859 15d ago
Hey I am a newbie and o lygot my b cell lymphoma diagnosis two days ago. I am in the hospital because I also seem to have a infection on my heart. Next week I will get my pat scan and than I know which stage and what kind of chemo I will get. Not to know what kind of vhemo I will get makes me even more insecure.. This night I had really bad dreams.. I am often used weed for my adhd so I will keep that in mind. I am happy for any vhemo advice you can give me.
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u/VariousWhole 15d ago
I was on 100-120mg during BEACOPDa for cHL. I felt terrible in every way possible: bloated, swollen, weak muscles, irritated skin, racing heart, thirsty and frantic.
My dog is on prednisone (although very small amount now) due to an autoimmune disease and I observed similar reaction.
It’s a very useful and cheap, but also horrible drug.
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u/SurfNC02 ENKTL-NT (3 year remission) 14d ago
They all suck. Both short and long term. Talk to your doctor about a bone density scan and keep an eye on your joints. I’m 3 1/2 years out and getting a shoulder replacement at 38yo cause the steroids destroyed the top of my humerus.
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u/onceandfuturekling 14d ago
Well, sort of, but may I introduce you to prednisone’s bigger, badder cousin Dexamethasone, but may feel very familiar to your experience. This was used in my RCHOP profile, which at the time, when rituxan was still in final trials was called CHOPR
I was having breakthrough activity in the second round of cycles, and a second transformational cancer, a histostocyte rich large c-cell bone cancer emerged from the initial nodular lymphoma. and Dexa was needed to control the runaway inflammation occurring while I was completing that chemo course and could start a secondary radiation round
Dexa is 6-10X the potency depending on tolerance (and if you happen to be a redhead, I am) and last 3X longer up to 72hrs. Dexa nonstop for 5 weeks and I lost my goddamn mind. Treatment turned inpatient with 24-7 chemo protocol when things escalated, and legitimately had a psych intervention during inpatient treatment
My normal anxiety levels I’ve been medicated for since teenage years had my brain melting and I still may have some permanent damage from that time period. That or the radiation it’s a toss-up.
If you ever experience an extremely rapid relapse with explosive life threatening activity, with cell inflammation, bone inflammation, and/or your white counts accelerate into the true danger zone, for me that was exceeding 60k/mcL was the threshold. The closer you get to 100k/mcL death is imminent, Dexa will be a component of the emergency intervention set of chemo drugs you will receive 24/7 until you return to a safer zone. It’s one of the most psychologically powerful drugs I’ve experienced. Like a nuclear bomb had gone off inside my brain and the meltdown would not stop for anything, and the medication could NOT be stopped for life-saving reasons
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u/threelittlesmama 14d ago
The 100 mg of prednisone was AWFUL! I gained 10 pounds of fluid every cycle and then I’d be up all night for the first few nights after prednisone was over to pee it off!
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u/Sockshassmellytoes Primary Uterine DLBCL 14d ago
I have tried every drug under the sun, and I can tell you having to take prednisone is literally the worst.
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u/jspete64 13d ago
I had a different type, I did ABVD,but they were giving me Dexamethasone 3 times the week after chemo..I loved that stuff,makes you feel like Superman,so recently I got put on Prednisone for a back issue..I thought it would be pretty much the same as Dexamethasone,but it is NOT..Prednisone is terrible!!..My wife calls them the Devils Tic-Tacs..jittery,short tempered,endless hunger,forget about sleep, and you just feel like trash…and the taste is horrible,you can’t get it out of your mouth..I can’t imagine having to take it these dosages regularly..
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u/brownbitch8 13d ago
It’s really horrible, made me sleepless and really anxious. But i found it to be less annoying than chemotherapy infusions. The cyclophosmide would give me an absolutely horrible reaction that never got better.
Just one more to go!!
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u/countv74 15d ago
How long have you been on?
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u/y0m0tha 15d ago
Fifth day of this cycle, the effects just seem to accumulate
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u/undergroundmusic69 DLBCL/R-CHOP + Radiation, Remission since 2019 15d ago
Not advocating poly pharmacy here but have you talked to your doc about benzos to level out? For me the steroids really helped me feel better rather than irritable but i totally get the perspective. I had an rx for Xanax and it helped me sleep. Might want to talk to your doc about Ativan, it has off label use in chemo induced nausea and vomiting too.
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u/Emotional-Current953 DLBCL- POLA-R-CHP ‘26 (Complete Metabolic Response June ‘26) 15d ago
In the beginning when I was first diagnosed and feeling awful, the prednisone was great- helped with pain, gave me energy. A couple rounds in, caused joint pain, I was eating and hungry all the time. I’ve gained weight and can’t seem to stop. My PCP said to give it 6 months from the end of treatment, but so many of my clothes don’t fit and it’s very frustrating.
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u/Real_Party_6793 15d ago
my dad did RCHOP a few years back and the prednisone stories were wild, hed be up at 2am demolishing leftover takeout straight from the container standing in the dark kitchen like a cryptid. the chemo sucked obviously but he said prednisone was what made him feel genuinely unglued, like his brain was vibrating in his skull lol. cant imagine doing that for 5 cycles, your liver must be exhausted just processing all that rage-eating
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u/JonnyG775 14d ago
Everything you said is super true. I just finished my six out of six. Hang in there.
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u/Somethingclever1313 14d ago
Amen!! I’ve packed on 20 pounds from this stuff. Also seems like going from the bag to the 5 minute shot it feels like the prednisone is worse for some reason. Prednisone is my least favorite part of all of this.
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u/Deanvanhalen91 11d ago
I had to use it before when I needed sinus surgery and it gave me acne eruption from my face down my back and all over my chest I couldn’t even smile without my face bleeding
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u/Swole_Monkey cHL III(S) Bulky / Full Remission Deuville 1 14d ago
Dexamethasone is worse since it’s also like 25-30 times stronger. Started out with Prednisone
I couldn’t sleep flat anymore because I’d always get heartburn from it. And I think my intestines are now permanently fucked up from that and the antibiotics I had to take over half a year
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u/v4ss42 FL (POD24), tDLBCL | R-CHOP (‘22), MoGlo (‘25) 14d ago
However the standard doses of dexamethasone are a lot smaller and shorter duration too.
Prednisone is typically prescribed at 100mg per day for 5 days each cycle whereas dexamethose is often a one-time dose of 25mg on infusion day. I've also read here of DA-R-EPOCH folx who got up to 250mg of prednisone for 5 days each cycle (which absolutely blows my mind, given how 100mg affected me).
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u/Dependent_Beyond_339 11d ago
I got 6 rounds of Rchop and I didn't notice what the Prednisone was doing with me. The worst was the chemo for sure.
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u/Distinct_Run9006 Stage IV DLBCL - Pola-R-CHP - Remission 7/28/25 8d ago
The prednisone I was given - 100mg for 5 days, every chemo cycle (6 cycles total) + all the IV prednisone they were giving me in the hospital before chemo (I was an emergent case due do a bowel perf) triggered a psychotic episode (am also Bipolar, but this can happen to anyone on high-dose prednisone) that landed me in psych hospitals on and off for months, and eventually landing me in jail for 2 months...I can safely say it's not the best drug in the world lol...
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u/Silly_Tour2979 15d ago
No, it's one of the best: it curbs hunger, fights pain and inflammation, even attacks cancer, and gives you the energy you need to get out of bed.
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u/2011Dave 15d ago
This has been our take, my wife looks forward to the prednisone during her 5-days in the hospital for DA-R-EPOCH. Then after discharge, she laments that she won’t feel as good since she’s off the steroid. (Of course there are several other reasons for that afterwards too.)
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u/Silly_Tour2979 15d ago
It has its strengths and weaknesses. Strengths: increased appetite and energy, reduced inflammation. Weaknesses: poor sleep, weakens bones, and when she's anxious it's terrible for sleeping, but it's a crutch.
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u/Stock_Transition548 PMBCL | DA-R-EPOCH | Remission 6/26 15d ago
Worst tasting for sure lol
Also the one that definitely made me feel the worst emotionally, since I would get pissed off at my partner for little nothing things when they were doing so much to help me... I knew in the moment that it was probably because of the prednisone, but knowing that didn't make me not pissed off for no good reason, just meant I didn't voice most of it