I’m on 60 mg a day - 30 in the morning, 30 at night for treatment of severe Emphysema. It’s way too much.
But when i try to wean myself from it (with the urging of my Pulmonologist, of course),
I get down to maybe 40 mg ( 20-20) by paring 5 mg/week but then I go in the tank. with Shortness of Breath (SOB’s) Attacks, etc.
Me: Could I be admitted to hospital and weaned there?
Pulmo: Yes, but your GP would have to get you admitted. I can’t.
The “I can’t” might be true, might be bullshit. Danbury Hospital has some weird admission rules.
Any Doper Docs, Nurses, Technologists have suggestions? I’m getting pretty desparate.
(This very year, I spent 11 hours on a Guerney outside the ER waiting for a room to open up from 11 am until I walked into my room at 10 pm.)
I was thinking get down to 40 mg/day, or less. Then if I go in the tank, call my GP, go the ER,
get admitted and let them wean me for the remainder of the steroid.
Hav you got something better than that? I hope so.
I did call him. And he called back just a bit ago. I explained the whole thing.
He can’t admit me until I show legitimate symptoms. And I won’t show symptoms until my dosage is low. So, I have to start paring down now. If I could just get to 20 mg a day, and then get admitted, I’d be well on the way to life without prednisone.
I’m not sure you’d have much better luck getting off prednisone in the hospital, frankly.
I don’t know why your pulmonologist can’t admit you. That’s not the standard practice in my area. Pulmonologists generally do a lot of critical care in hospitals, so admit and discharge a lot of folks in my neck of the woods. And they can generally make a case for admission due to medication change which is expected to cause significant disability. But rules may be different elsewhere.
If your pulmonologist has a concrete plan to get you off prednisone in the hospital, great. But consider the following:
COPD patients are on prednisone for a reason, and that’s generally because they need it to survive.
If someone with COPD tanks in the hospital because prednisone has been reduced, they’ll still need to treat the lack of oxygen. Either by giving more oxygen (which can be done at home), bumping the prednisone back up (which can be done at home), or by intubating the patient and hooking him up to a ventilator if they truly do tank to the max.
Now I’ll readily admit I don’t know details about your case so there may be other things the pulmonologist thinks he can do for you, but I’d advise asking specifically about the whats and hows.
Best of luck. Lung diseases suck. They have impacted waaaaay too many people in my personal life, and as a result I’ve learned far more about them than the average primary care doc.
In my neck of the woods, it’s not uncommon for a surgeon/orthopedist/gastroenterologist to request/demand that a pt be admitted by a GP, and they will consult on the chest tube/broken bone/gastic bleeding. Pulmonologists can and sometimes do act as the primary doc, but the workload for just managing a specialty is much lower than managing the whole pt.
EX: a pt in a motor vehicle collision with multiple rib fractures, he needs a surgeon on his case, because trauma pts sometimes need surgery, but he might not, and he will surely need someone to manage pain, diet, and other things a surgeon can, but would rather not do.
I’m with QtM here, can you explain why 30mg twice a day is “way too much?” Are you having significant side effects?
What other medications are you taking? Are you on inhaled steroids too?
Honestly if you came to my ER asking to be admitted for a prednisone wean, I don’t think I could justify it. In light of the fact that it probably isn’t necessary medically, your insurance is not very likely to pay for it, meaning you’d be on the hook for the whole thing out-of-pocket and we’re talking several thousand dollars minimum. However, if your GP or Pulm MD can make a case for inpatient weaning then it might be a different story.
My pulmo keeps telling me 30 mg b.i.d. is way, way too much. He’s wary of the legion of side effects prednisone is infamous for.
My face and body are so swollen, people I know don’t recognize me. I take a lot of meds including Advair and Preventil Inhalers, plus I nebulize Ipratropium Bromide and Albuterol Sulfate.
Needless to say, I’m on oxygen 24/7.
I have CA in the right lung. Found in February of 2008, the 3-4 tumors shrank under chemo and rad therapies, and haven’t grown since. But as a hedge against metastasis, I get an infusion of Alimta every 3rd Wednesday (and forever more). Invariably, comes the weekend and it knocks me on my ass.
But it isn’t the CA that’s causing all my woes. I’m severely emphysemic, and this is why I’m on prednisone.
I’m not gonna try to second-guess your doctor, but off the top of my head I’d say 60 a day, while not ideal by any means, is not all that high, and I’d weigh the side-effects of not being on so much prednisone vs. the side-effects of being on it very, very carefully.
Sounds like you’re pretty maxed out on other meds for COPD, did they ever have you on spireva rather than ipratropium? (Not saying you should be, just curious. Ipratropium should do the same job.)
Has volume reduction surgery been discussed? I’d understand if that wasn’t an option due to your tumor/radiation history.
<<sigh>> The only thing worse than too much prednisone is not enough prednisone. You have my sympathy, my friend.
Your dose is not too much if it’s what you need to stay alive. I was on the stuff for a couple years, and I couldn’t do without it. My problem wasn’t some short term one where you can stop after a week. It’s nice if you can get off it, but maybe you still need it. This is certainly something that you need to be following what the doctor says. Your body eventually stops making it and you have to be careful when you stop. Tapering off can take years for some people.
I might suggest that you are tapering your dose too quickly at 5 mg. per week. Not giving your body a chance to adjust to the slightly lower dose before you lower it again.
Maybe try lowering by 2 mg. each week ( 1mg am and 1 mg pm. each week) or even slower. (one mg. per week) Then you can monitor your symptoms and not let them get too severe.
It is a fine balance to be on enough steroids to control your symptoms and still minimize steroid side effects.
That certainly suggests an alternate plan. I’ve tapered some folks down by 1 mg every 2 or 3 weeks, when necessary. It’s something to talk with your doc about.
I didn’t like some effects, but considering it was probably keeping me alive the symptoms were acceptable. I weaned off the medicine at home. Try to reduce too much at once and it back fires. Slow and steady is what gets it done. I had to increase it at times, but got it back down. Eventually I made it.
My wife was on Prednisone for almost a year at 60mg/day for a non-pulmonary reason. Then when the need for Prednisone had resolved, they weaned her off it. But the schedule was very, very slow compared to what you’re talking about…
She was cut back to 50/day for 3 months, then 40 for 3 months, then 30 for 3 months. Once we got to 20/day we then went down by 5mg every 3 months. Bottom line, it took 2 years to get off it.
Not a lot of fun to be on it so long, but she had none of the usual adverse reactions people get on withdrawal.
I’m with the others who talked about the slow drop. I was on about 85 mg for 6 months - kidneys and eyes (a single weird syndrome), not lungs. I had all the round face and massive weight gain so I didn’t look like me, but I also didn’t think like me. I really hated the mental effects. People said I was being fine, but I knew my thinking was racing and screwed up. I ended up knitting a huge amount to stay calm. I had to use metal needles because I broke plastic ones.
When my kidneys were under control, it was a VERY slow drop to get off it. About a year, I think. I still have daily eye drops - I just can’t seem to get rid of them, but it’s no big deal compared to what you are on.
For years I had nightmares about having to go on high dose again. I have only had a few returns to very short term which was quite different and no big hassle. You have my sympathy and understanding about what a dreadful feeling it is.