I laid out your plan to my Pulmonologist, and he was all for it. Thank you for suggesting something so sensible, pudytat.
I might well be foiled in this weaning business by the Alimta infusion that I get every 3rd Wednesday. I take a big dose of a another steroid, Decadron, on the day before it’s infused and day after. I also get a big dose of Decadron in the Alimta itself. Knocks the crap out of me.
In 1997 I was diagnosed with a potentially fatal autoimmune blistering disease of the skin called pemphigus.
At the time, I was member #8 on the very first “list serv” bulletin board. I built the first website for pemphigus, went to the first 8 conventions…yatta yatta. If you aren’t part of a patient support group, I can tell you that most of our patients found such a thing every bit as important as the meds!
The point is that pred was basically the only treatment at the time. Some folks got as high as 120 mg per day, once a day…and the side effects were worse than the disease. They don’t go that high anymore. (They have other meds they can add now, stuff that wasn’t around back then.) But even today, some patients can wean, some can’t. As you have discovered, bringing it down too fast causes a relapse…which is a bitch in any language.
Five years ago, just when I was put on 20 mg of Methotrexate (an immunosuppressant) to treat my arthritis, the leaders of research into pemphigus came up with the idea to give patients 5 mg of pred every other day to “ride the brakes” of our over-active immune systems. The methho works for me like the pred works for others.
My two cents:
Absolutely reduce your dose at a much slower pace as has been suggested.
Discuss with your doctor the possibility of reducing on alternate days. (60 on odd numbered days, 59 on even. Do this for a time, then drop the 59 to 58. In pemphigus, they got to 60 on odd days, zero on even before they started to lower the 60 mg; but that was for pemphigus.
I had to push a bit to get my doctors to contact the leaders of pemphigus research at Johns Hopkins, NYU and other “powerhouse research centers.” My doctors wouldn’t believe me when I told them what I had been told, so I made them verify what I heard. Now, my derm brings in her new students and I tell them about pemphigus.
Go to PubMed and read everything on emphysema and maybe about pred as well. You may not know what they are talking about at first, but with a medical dictionary (some good ones are online) you can over time, become an “amateur expert” and will be better equipped to ask questions and make decisions.
Attitude is key. Be positive and keep our spirits up. No one is made of iron, so I’m sure you’ve had your down days, just try to keep them to a minimum. I hope your support network is a strong and capable on. If not, get online and contact others in your same boat.
Concentrate on what you can do, rather than on what you can’t. (This made a huge difference for me.)