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Post by skate4life on Sept 20, 2014 10:40:30 GMT -5
I participated in a conference call with the COPD foundation for patients that had been hospitalized for an exacerbation. They had questions for us as they wanted the patient's perspective of the effects of prednisone, what doses were used and for how long. It was so great to hear other people from around the country share their experience. I think most of us agreed that we received the standard protocol of 125 mg SoluMedrol IV in the ER then IV Methylprednisone in tapering doses while in hospital, then once on oral pills some of us were discharged unless something else was going on (like pneumonia, chf, etc.) We all liked the rapid relief of difficulty breathing, the energy to be able to get up and start moving/walking, etc. and that the taper extended during a week or two at home to help with the physical energy. No one was unduly disturbed by the fragile skin or moodiness. The transition from the acute to chronic phase was a little difficult and sometimes we hit a real lousy feeling for a few days until we stabilized at our baseline. The reason for this 'meeting' was to hear a patient's perspective as they are starting studies about decreasing and shortening the whole steroid protocol for exacerbations that require hospitalization due to the potential side effects of the steroid. I still had a lot of questions about who would be a candidate for lesser doses. At first their communication was for those admitted to ICU and were ventilated (intubated or non-invasive) but I noticed in further info that they deleted the airway management and ICU - just left it to being hospitalized. There was only one other person who knew their steroid doses while in the hospital, a man who obviously keeps his own excellent records No one felt the protocol needs changing.
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Post by Darcy on Sept 21, 2014 6:46:01 GMT -5
I have never been on prednisone but I would like to be in the know for the future, so I have just one question. Is this just information in general, or did something good or bad come from this?
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Post by skate4life on Sept 21, 2014 9:37:52 GMT -5
Darcy - As far as I know, patients admitted to a hospital with an acute exacerbation of their COPD are given a large loading dose of IV steroid to help reduce the inflammation in the airways. This initial inquiry is to ask patients (and another session was for caregivers) what their experiences were with the steroids and to identify issues you felt important, outcome measures that would impact your life and any other input you have that may influence the components of the study. The study stems from a gap in knowledge around what the appropriate dosage of steroids is during an acute exacerbation and during hospitalization. Apparently there is a huge variation in the way steroids are used. Steroids are not without their detrimental side effects.
'In order to prepare for the application and research design phase (to get $ for a Grant to do study)the researchers need to discuss issues associated with steroid use with patients and caregivers to identify issues they find important, outcome measure that would impact their life and other input that may influence the components of the study.'
One of the on-phone researchers was a pulmonologist from Univ. of Chicago with an impressive list of published works, known as a researcher and one who truly listens to the patients. He did not say anything until I asked him at the end what precipitated this conference call. I think this may be step one in standardizing a steroid protocol for hospitalized patients that gives the best results for COPD taking into consideration the patient's needs. I project it will take a number of years before this comes about.
You will hear many patients tell you that prednisone is the drug you love to hate! Please don't reject it based on other's experience (or all the crap/side effects) you read on the internet as each patient is different and it truly can be a life saver!
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Post by sandy07 on Sept 21, 2014 10:13:57 GMT -5
Around my part of the country it is common practise to give antibiotics along with prednisone for an exacerbation. They must have given it to me in the hospital last year but I didn't ask how much. When NOT in the hospital it's a taper down. My last taper down hasn't really stopped yet. It's been going on for 6 mos. every time I get down to 5mg my chest tightens up. I've told the doctor and now I take 15 mgs every day. I tried stopping again and my chest got tight again so I went up to 15mg. I hope to stop there. It's an anti-inflammatory so I guess I have inflammation. It's been going on for about 9 mos. Maybe it will be a permanent thing. Is anyone else on it for a long time?
The question about the appropriate dose of steroids should, IMO, depend also on the weight of the patient. There are other drugs that are but I know that the doctor will prescribe 50mg. to all..regardless. That's why I take less...maybe 30mg when exacerbation and drop to 10 or 20. Summer allergies don't bother me as much either. But that's just me. It's a weird drug to be sure..
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Post by John on Sept 21, 2014 14:17:53 GMT -5
thankyouWhen skates! I had bronchitis last March My Gp put me on roids only but had to give me antis after three days as the infection wasn't going away even thought I did feel better with roids .
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Post by skate4life on Sept 22, 2014 8:34:44 GMT -5
Yes, Sandy & John, antibiotics are also commonly given when admitted with an AECOPD regardless of symptoms of an infection. In July they gave me Leviquin for the first time. I expressed my concern about tendon ruptures associated with this powerful antibiotic but they gave it to me anyway. I used to take azithromycin 3x a week but after my February admission and intermittent diarrhea the doctor stopped it. He was concerned I had a low level C.Diff infection which did not require any treatment.
This conference call was specifically targeting the prednisone. I think they are considering a shorter taper period. I don't think they would eliminate the prednisone, just do more of a 'burst' schedule. My burst dosing at home for a moderate flare/exacerbation is 40 mg x 5 days, but I think there would have to be a higher dose to quickly knock down the inflammation when it is an acute exacerbation, just not extend the tapering as long as many currently receive.
Sandy, a man in my rehab group also had a hard time dropping the prednisone from 5 mg to zero. Our RN leader and a couple of other people said sometimes you need to drop by 1 mg/week to wean off. Remember the adrenals need time to restart making cortisone again. If in doubt, your doctor could order a cortisol level. I am on a 10 mg. baseline daily.
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Post by hugahusky on Sept 22, 2014 9:14:01 GMT -5
Thank you Skate for this very interesting information. I am one of these people who cannot tolerate 50 mg/day. Like Sandy, I have finally convinced my respirologist that I cannot function with the higher dose. Not only do I have mood swings but about 12 hours after taking it, I cannot walk without my oxygen and walker. This is unusual for me as now I use my oxygen when I go out but usually do not need my walker if I go out with someone else. I use it when I go out by myself though, just in case I run into trouble.
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Post by izzie on Sept 24, 2014 16:28:07 GMT -5
I had to go into emergency yesterday and the Doc put me on 5 days of Prednisone, 50mg per day with no tapering off. The last time I used prednisone was 7 years ago for a month, and I don't remember how many mg per day but was slowly tapered off the drug. Prednisone tends to make me feel really well after a few days.
It's the really aggressive antibiotic called Levoflaxin in Canada or Leviquin in USA that concerns me. It just reaks havoc on me and both times that I've been on it....I've ended up in the ER with extreme shortness of breath by about the 9th or 10th day of using it. Physicians like it for patients with COPD because it goes really deep into the lungs to clear out infection, but yesterday I was in the ER because the lower lobe of my right lung had collapsed. In the ER...they gave me 3 treatments of Atrovent in a nebulizer and my lung returned to normal.
Here's the thing about antibiotics, if you have a bacterial infection...you will have fever and most definitely need antibiotics. However, if you have a viral infection......you won't have a fever and antibiotics won't help at all, it just has to run it's course and they can only treat the symptoms. The Doc told me there is no real test to determine if it's viral or bacterial and both will cause yellowish mucous in the bronchial and/or nasal area. With COPD patients, they prescribe antibiotics in both cases...........but I wonder if that's a wise approach. I suppose the inflammation could also be viral/bacterial.
Anyway, I think I'm off topic a bit...I'm glad I don't have to be on Prednisone all the time, but I do feel really good when I take it and for a long time after as well. Glad to hear they are doing additional studies with it.
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