Steroid Questions

[Ashlee H.]

I have had three rounds of Avastin now and all my joints hurt something terrible. I tired more walking, but the pain just got worse. This time for chemo, ONC added a low dose steroid. Pain is gone, but I'm sure once it is out of my system the pain will be back. I remember Terry telling about her Avastin bone pain, and she finally stopped the Avastin due to this pain. I've heard about the steroid "crash". When does that normally happen for you? Anything else I should be alerted to regarding steroids? Thanks.

[NWgirl]

I'm not much help here as steroids never seemed to give me much benefit other than prednisone (sp?) for my Erbitux rash - it really took down the swelling.

Steroids always made me jittery - like too much caffeine and made it more difficult to sleep. Those are my only experiences with them. They've been given to me in the past to help with nausea - but they didn't work for that purpose so I try to avoid them.

[BrownBagger]

I've only had Decadron during chemo infusions, which I guess is a steroid, though probably not what you're talking about, Ashlee. And I'm sure you've had your share of Decadron. Personally, although I tend to like stimulants, the Dec. put me on edge and made sleeping difficult, which I didn't care for. Also, I always associated it with nausea, so there was a certain amount of mental aversion to the stuff as well.

I'd sure give it a try, though, if I were you. The joint pain doesn't sound like much fun.

[Angiemarie2000]

I get the steroid infusion the day of chemo as well as a low dose at home twice a day for 4 days, then I taper it down to minimize the crash. Day 5 I take one pill and day 6 a half of a pill. I enjoy them, the give me energy. I clean the whole house! They also increase my appetite which I need since I lost 20 lbs with surgery. The crash days are 7 and 8' sometime 9. I'm just tired and rest at home with light activities. I get grumpy too, seems like that's during the crash period. I'm on avastin, but have never had pain, could be because I've had steroids ever since my first treatment.

BOL

Angie

[SkiFletch]

If you take a higher dose cortico steroid (~25mg+) like we get with our decadron infusions, the crash for me happens ~2 days later. I've previously taken a low dose cortisone (5mg) and never had a crash when it was time to be done with it. They are powerful anti inflammatories and do work wonders on joint pain. Long-term higher dose use though messes with your endocrine system and can lead to resistance/dependence on them. What we're given for our infusions is not long-term, high dose stuff, that's just intermittent treatment so we're not at that risk, but someone like Anji's posts indicated that Larry likely struggled with issues resulting from long-term high dose steroid usage. The other normal side effect of their use, even in moderation, is weight gain. They stimulate the liver to release glucose and most of the rest of your cells will gobble it up and those capable of doing so (adipose tissue, muscles, connective tissues) will grow as a result.

Doses and long-term use effects for your specific situation really need to be discussed with your docs. Hard for us to fruitfully comment . I will also say that if an anti inflammatory worked so well for the pain, it might be worth asking again about plain old NSAIDs. I know many oncs don't want their patients taking them as it can mask other symptoms, but if you're going to be miserable without them, the argument for their use should be brought up.

Good luck Ashlee

[Anji]

Ashlee, for Larry steroids were a double edged sword. He needed them initially to control nausea and vomiting from chemo. Like N&V that ended us back in for fluids every other day....so he received the Decadron during infusion and then 5 days at home. Eventually 5 days wasn't enough and they increased to 7 days.....yada, yada, yada.....

Larry did end up with steroid induced Addison's Disease. Not a fun time. But with chemo, and the CHEMO INDUCED ARTHRITIS, weaning completely from steroids never happened for him. Diabetes developed. Severe weight gain in the head, neck, chest area. Steroid induced acne, thinning skin and huge, purple ugly stretch marks were some of the lesser side effects.

Steroids are wonder drugs. They can also produce side effects that no one should suffer with....so choose wisely, and use only the lowest dose, for the shortest amount of time, to produce the desired effects. Stay in contact with your doctor. Watch your body for signs and symptoms.....and be careful.

Would we do it the same way again? Hmmm....hard to say. At the end, some of the steroid side effects contributed greatly to Larry's pain and inability to function....but during the early times when they helped with N&V and athritis and gave him a "high" that allowed us to enjoy time together....they were worth it.

Anji

[Guinevere]

For me, the steroid crash if I have to have atropine along with the Decadron comes about a day and a half after the infusion. It's like someone took the batteries out. I can literally feel myself winding down. However, if I just have Decadron, I don't have the crash so much and it's harder to tell when it's worn off.
I'm very careful about the steroids. From working for a anesthesiologist years ago, I saw so many operative reports where the steroids affected the lining of the intestines making them friable and easy to tear. I have enough gastric problems without adding something that will make what integrity my intestines have more of a problem. I can't take NSAIDs. They make my tongue swell so that's not an option to control the jaw bone pain the Avastin caused. I just took Tramadol and, when it got worse, Dilaudid. Luckily, I wasn't on it more than 6 rounds and we realized it wasn't doing the trick for me.
Hard to say what the right thing for you would be but I'll be praying you get the answers you need soon.
God bless ~
Guinevere

[Ashlee H.]

I was thrilled my bone pain went away. I felt so good yesterday....but today is getting the crash I've heard about. You are right. It is like someone just took the batteries out of you.
Thanks for the honesty about the steroids - I knew there was a reason I should fear them. But, if it gets me through the next few rounds, think I'll tough it out until the next scan and then reconsider. Just got my lab reports and CEA went from 5.6 to 4.0. CA 19-9 59.3 down to 43. So the chemo appears to still be working on these cells....just wish we could kill them off so I don't have to do any chemo.

[Ron50]

Hi Ashlee,
I have been on some awful drugs since being dxed with ca nearly 15 years ago. One of the chemo agents I was on was discontinued in the US in 2002and Canada in 2003 because of severe side effects and the availability of improved drugs. I agree with the side effects ,not sure that there were better drugs. A friend and I were both on levamisole ,she was st4 I was st3c,we have a combined survival since chemo of over 30 years ,,,,,with no recurrence. But we both have undiagnosed auto-immune problems. Mine are related to protein los thru my kidneys,severe neuropathy(started around seven years after chemo)and severe psoriatic arthritis. Initially my kidnies were treated with steroids. I was on 75mg daily of prednisone for18 mos. I don't know how I did not commit suicide during that period,that's how bad a drug it is. It took nearly three months of decreasing doses to wean off it and get my body producing its own cortisol again.I had a major flare of arthritis since finishing steroids. I have been treated with some serious immuno-suppresants to try and alleviate it. They all have serious side effects. My doctor credits the prednisone with me now being type two diabetic with fairly rapid progression. In hindsight the kidney problems did not respond to prednisone,the only thing to help at all has been methotrexate and it stopped working after a couple of years. If you can function without steroids ,do it. They are not worth the long term grief. Best wishes Ron.

[Bev G]

Ashlee, for Larry steroids were a double edged sword. He needed them initially to control nausea and vomiting from chemo. Like N&V that ended us back in for fluids every other day....so he received the Decadron during infusion and then 5 days at home. Eventually 5 days wasn't enough and they increased to 7 days.....yada, yada, yada.....

Larry did end up with steroid induced Addison's Disease. Not a fun time. But with chemo, and the CHEMO INDUCED ARTHRITIS, weaning completely from steroids never happened for him. Diabetes developed. Severe weight gain in the head, neck, chest area. Steroid induced acne, thinning skin and huge, purple ugly stretch marks were some of the lesser side effects.

Steroids are wonder drugs. They can also produce side effects that no one should suffer with....so choose wisely, and use only the lowest dose, for the shortest amount of time, to produce the desired effects. Stay in contact with your doctor. Watch your body for signs and symptoms.....and be careful.

Would we do it the same way again? Hmmm....hard to say. At the end, some of the steroid side effects contributed greatly to Larry's pain and inability to function....but during the early times when they helped with N&V and athritis and gave him a "high" that allowed us to enjoy time together....they were worth it.

Anji

Hello dearest Anji,

If this question brings up stuff you'd prefer to forget, please ignore it---but I am so interested in what you said about Larry's Addison's. Did they definitively decide it was steroid induced (ie the steroids fully suppressing his adrenal function) and not some sort of primary Addison's Syndrome? Wow!! If that's the case, Anji, once again you've done us all a huge benefit in pointing out this possibility. I often thought when the whole wacky steroid thing was going on with Larry how sucky it was that he appeared to have Addison's on top of the other stuff, never really thinking (as I remember it anyway) at the time about steroid induced Addison's. Geez!

For the newbies, as Fletch said, this is not about the pre-chemo steroids--they are relatively low dose, single shot deals, so don't worry about adrenal suppression with those, please.

Thanks, Anji, if you feel up to helping me, and others, understand this. I can't remember why Larry was put on the steroids to start with. And, how do you feel they made things worse towards the end, if you don't mind saying?

Much love to you, Anji. PLEASE don't feel any obligation to respond.

Bev

PS I apologize Anji, I just re-read your post and see that Larry was on the steroids for N & V, then chemo induced arthritis (didn't know that existed and now wonder if I have that! Of course, Larry had tons more chemo than I have)--sorry I forgot that between reading your post and writing to you. Thanks, chemo.

[CRguy]

Not to jump in here out of context, but in reply to BevG and Anji... and Ashlee's original concerns :

Fletch stated dose and duration of corticosteroid as major factors ... YES ! YES !!! YES .... but I have to add in type as well.
Prednisone/prednisolone are closer to our body's own normal cortisol/cortisone in duration and effect. Low doses for a short time will not have a major impact on suppressing our own production of cortisol. Used at high doses, for a longer duration, we run the risk of shutting down our own body's ability to produce its own cortisol......

BUT... corticosteroids like dexamethasone / dex /( Decadron ) and other synthetic steroids WILL have a greater impact on suppressing our own production of cortisol.... even if it is only a few doses, or higher levels for a shorter course, than using prednisone or prednisolone. This is what typically happens with Decadron use in the chemotherapy setting.
The steroid "cruise and crash" is a very low level side effect of what dex can do to the HPA (hypothalamic pituitary adrenal) axis, the body's main hormonal feedback and control network.

BUT : high levels of the more potent synthetic or semi-synthetic corticosteroids, used over a longer course, will eventually shut down the body's ability to produce its own cortisol, resulting in Iatrogenic Addison's Syndrome...i.e. "caused BY steroid treatment" when the steroid is stopped .... even if the patient is suffering from steroid overdose...Iatrogenic Cushing's Syndrome while still on treatment, there will be a lag time before the body can start its own cortisol production again.

The body takes a while to readjust to the control of the cortisol production and its effects...SO someone who has had too much steroid, may NEED steroid to compensate until their own production is able to kick in again... Yes I know....It is NOT a clear cut situation and there is always a need to monitor the patient and the lab work until things are back to ..."normal"....

(( Sorry, but this is a very simplified answer which does NOT even include discussion of the decreased mineralocorticoid production, which is actually THE life threatening aspect of true Addison's Disease in people and pets... ))

IDK.. ??? did this help or hinder ?????
My personal take : " I hate Dex.... for me."
My professional take as a vet : " Proper use of steroids (dex) is absolutely essential in some circumstances and I would NOT be without them in caring for my patients."

Yes I know..I should run for political office but sometimes that is just the way we need to roll.

Cheers all
CRguy

[Angiemarie2000]

crguy

Thanks for that info, good to know!

Would the prednazone (sp) help with nausea? I love how these doctors only give you parts of the true risks( sorry personal rant)

My onc got some explainin to do

Angie

[Ashlee H.]

I'm so confused. Guess I'll have quite the chat with my ONC when I see him at the next appointment. Thanks for all the input. Lots of think about.
-Ashlee

[Ron50]

Hey Cr Guy would be an interesting study to see how often vets get bitten by animals on steroids,probablly double . I remember The feeling going on the steroids . I started on 25mg and built up by 25mg a week up to 75mg. At day two I could have taken on the world by three weeks I was ready to tear the world and everyone in it a new fundamental ororfice. I had been on it for months when someone decided to advise me that it had a bad habit of degrading calcium. I have since been dxed with spondylitis . They think it was from steroid induced oste-perosis. I have lost around seven cm in height. I was on the full dose for 18 mos and the wean down for around 3 mos. My rheumatologist would not let me get lower than 15 mg daily for quite a lot or that 3 mos. It was originally prescribed for minimal change disease of the kidneys. I have undergone three kidney biopsies . All have shown problems but none that fit the pattern of known kidney disease. My rheumatologist is an ex oncologist and he believes my problems stem from one of the chemo drugs I was on,namely levamisole. As a vet you may know of it ,needless to say I never suffer from worms. Ron.

[Anji]

Bev,
Yes, Larry was diagnosed with steroid induced Addison's Disease. He also had Cushing's syndrome, and we were able to decrease the dex and eventually start him on Prednisone to address the Cushing's (the severe weight gain in his upper body, purple stretch marks, thinning skin). He was never able to wean entirely off the steroids, because his body was being very, very slow to begin making it's own cortisol. Larry stopped chemo in September 11, and we began the wean then, and he died in August 12, still on the steroids. Now, to complicate matters, he was diagnosed with brain mets in May 12, which necessitated high doses of dex once again. He came off the high doses fairly quickly, but never again got back to prednisone, but required dex the rest of his life. When the brain mets recurred after surgery, he required even higher doses of dex to control the brain swelling. It was moderately successful at controlling those symptoms.

By the time Larry passed away, he was so swollen and obese in the trunk area that breathing was compromised. Of course, his lungs were full of tumors, too, so who knows what the real culprit was. But I believe, as do his doctors, that his physical size impeded his breathing. Which in turn made moving around, walking, eating, etc even more difficult. Not to mention that he didn't LOOK like himself. The swollen face, neck, trunk area.....

CRGUY is right. These side effects are dose dependent and also drug dependent. Dex is a good thing. It helped Larry in many, many ways. Until the side effects caught up and then we chased our tails.

Addison's disease is a scary thing. Several times, during illnesses or hospitalizations, Larry would have an adrenal crisis. They require IV fluids and high doses of steroids immediately. And sadly, not all doctors are aware of and know just how serious, adrenal crisis can be. We learned very quickly how to watch for the signs, and were never without our rescue injection. Needed it on a few occasions at home, too.....

And don't forget. If you've taken high doses of ANY steroid in the past year, ALWAYS tell your doctor, dentist, surgeon....you may need a small dose to get through any medical procedure or illness.

There's my lesson for the day. Like CRGUY, I don't know if this helped, or just muddied the waters....

Anji