Prednisone (corticosteroids) for three months - CLL Support

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Prednisone (corticosteroids) for three months

BMFCDRW profile image
7 Replies

Due to nephrotic syndrome caused by CLL, I had to take prednisone (corticosteroids) for three months, specifically 80mg. Has anyone been on cortisone for that long? Did it have many effects? Was weaning off very complicated? Thank you very much

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BMFCDRW
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Spark_Plug profile image
Spark_Plug

In relation to CLL treatment, I have no idea. However, my wife experienced the sudden mood swings. It had both of us quite concerned until we found out that it can happen.

You may want to look up half-life, and consult with your doctor beforehand, it would be good to tell someone else, the feelings are very real. 🙂

ArtistBlacksmith profile image
ArtistBlacksmith

I was. Started at 200mg and had to taper to 0 over 3 or 4 months. Side affects- lots of energy, very little sleep. I just went with it and got up at 2 or 3 am and started work. Used 25mg Amitryptilyne to try and get some sleep. Ate like a horse and gained 7kg over the period- was always hungry. Got the odd rash now and then. Came off the rush in the mid teens and started getting more sleep/less work done but always felt like I had drunk too much coffee- jumpy, palpitations, restless. This persisted all the way to zero- was'nt bad, just unpleasant feeling coffee wired all day and night for weeks on end (as opposed to absolutely hyped during the higher dose).

Moggn profile image
Moggn

I don't recall the dosage rates (cos it was 6 years ago) but I was on prednisone for several months. I had very similar experiences to ArtistBlacksmith - hyper active, almost no sleep, hungry for junk snacks and put on weight. Plus mood swings, mostly frustration related, but I was also pretty sick at the time while also trying to sort out some important family issues so multiple factors at work. No rashes.

The dosage was ramped down and so did the eating and hyperness. After completion the only ongoing affect really was continued much disrupted sleep. So overall not too difficult. Best wishes to you.

thompsonellen2 profile image
thompsonellen2

I've been on prednisone but at a much lower dose - 20 mg for a shorter time - 2 weeks. They still had me ramp down so expect that. It gave me a lot of energy. I was very aware I could get moody but I don't think that happened.

FiArt12X profile image
FiArt12X

The weaning off period will have a significant affect on energy levels and possibly other minor physical well being feelings. That is a significant amount and time frame to be on that medication. Your medical, I imagine, have the experience and depth of knowledge in addressing the changes.

Vostar profile image
Vostar

I was on prednisone for several months at 40 to 60 mg daily and another month or two at reduced levels in the weaning off process. The weaning off process was not difficult for me as I was happy to be done with the irritability, shaky hands, and lack of sleep. Keep in mind that prednisone can dramatically affect blood results in some people. My WBC basically doubled (from 43 to 85) and then significantly dropped as I quit the drug (all the way down to 18) before stabilizing back in the 40’s. You should not overlook another concern with prednisone in CLL patients. It suppresses the immune system and puts you at higher risk for serious infections. My doctor prescribed the antibiotic drug Bactrim for me as a preventative measure. Good luck.

Rosiehiker profile image
Rosiehiker

Hello I had just posted the same question recently. I just weaned off from 60 mg at max to nothing.

I was only on for about 5 weeks as it didn't work for my condition.

I did get the mood/energy swings, high glucose despite being very careful with my diet.

Bloodwork was done after the 3rd week and glucose had risen as had neutrophils and lymphocytes.

I just had Bloodwork done again when I was down to very low dose and everything back to normal (moods as well) except my lymphocytes continue to climb so don't think that was from prednisone. My igg and iga are down even further as well (4.71 & .41) and again I don't know if that is effect from prednisone.

I was happy to be done with except now that it didn't work they want to try methotrexate which I am REALLY not keen about.

So moral of story though we might not like it we unfortunately still can get other conditions that require we put up with it.

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