I don't think you are at all crazy for trying alternative medicine, when Western medicine is offering such difficult options. Keep us updated on how the herbal medicines work out for you.
Kim said:
Hi, Jon.
I've been on prednisone for over ten years (80mg, sometimes higher, sometimes lower) and I have to say it's really played havoc with my system. I well understand your desire to taper down as well as feeling miserable without it. What I'm trying at the moment is an MD who is also a Chinese herbalist. It's a shot in the dark, I know. But, so far it's helped me lose 17 lbs. and decrease my prednisone by 10 mg. I've tried nearly everything. I admit, I'm in pain. However, under a Dr's care, I'm eating better, sleeping better, and feeling better emotionally. I'm not sure what I can say except, hang in there. Remember that tapering down on prednisone should be done slowly under dr's supervision. If you must stay on prednisone, I recommend trying alternative treatments. It might sound silly to some. But when you've tried everything else, alternative medicine doesn't seem so crazy. Just be sure you see an MD or an ND and that all your doctors know what you're taking and how much. I hope this was a little helpful.
I was on prednisone for 17 years at varied doses. The worst part of staying on it long term are all of the side effects. You just need to be careful and watch for any side effects until you are able to taper off and replace it with something else. It took me 17 years to be able to move to placquenil and naprosyn without a side of steroids. I'm now flaring again after an 8 year reprieve and am starting back on 40 mg of prednisone myself...vicious cycle either way. Some side effects I had are hypothyroidism, hair loss, problems with teeth deteriorating, excessive weight gain & steroid psychosis.
I'm not sure you can blame hypothyroidism or .hair loss on prednisone. I had both long before prednisone. I have had only prednisone in taper doses because my rheumy says you can't be on prednisone on a long term basis.
I was just diagnosed in December and I was put on prednisone (5mg). I have been on very high doses in the past due to platelet issues and know how miserable being on those high doses is! 30 lbs in 6 weeks! But I guess it was better than internal bleeding. That was also Lupus related I am sure, but that was almost 5 years ago. My current dr. Told me to try decreasing by 1 mg per month. when I went from 5 to 4, I thought someone ran me over with a truck. After 3 weeks though I started feeling better. Now I am trying to go from 4 to 3 and I cannot function. I went back to 4 today! My issue is mainly horrible joint and body aches. It is like I have the flu everyday. I am fortunate to not have the skin issues. Still, makes it hard to care for my family and work. I guess I will just accept the fact that I will be on it for a while. Being able to move wins over getting into a 2 piece this summer! LOL
I was put on Azathioprine and have not suffered any of the side effects of prednizone. After years of fighting with it, I begged my doctor to please not put me on prednisone. I was so grateful for the change. I was given a medicine to help with dry mouth called Pilocarpine. It is a miracle for your dry mouth issues. About the platelet issues, I fought that too for 5 years. The only thing that took care of mine was having my spleen removed. It sucks when you have to start losing organs but it’s better than you life. Good luck all.
That is interesting Destiny. My platelets plummeted after the birth of my third. A routine blood work up found my platelets at 3,000. Needless to say they thought it was leukemia. I had Hodgkin’s Lymphoma when I was 21. It was a stage 4 so the cancer was in my spleen. Despite being deathly ill from chemo and radiation over the next 8 months, I responded well and have been cancer free for 16 years. I can’t help but wonder if the Lupus is related to the cancer or treatment of the cancer. They were able to save my spleen. My levels are still low, but not drastically so. Idiopathic is what they said after bone marrow biopsies and enough steroids to kill a horse. Now we know it was most likely lupus related. One of my first symptoms.
Mom2my3, My platelets dropped down to 2000 during and after my pregnancies. I had my spleen removed when I was 19 but didn’t get fully cured of the platelet issue until after my last child was born. So basically 3 years. The issue was absolutely linked to the lupus. It’s known as ITP. They treated me with IVIG’s and tons of steroids too. Glad you have all your problems with it under good control. I hope for you it stays that way. Also, they thought I did have Leukemia but it turned out my spleen was destroying my platelets. The bone marrow biopsies are awful ugh. Hope neither of us have them done again. Good luck hun.
Hello I was on a high dose for a while & when I tamper down & begin to flare I went back on my high dose..so my answer would be wait until you are stable enough to tamper down..if need be take some vitamins to replenish some things that steroids are take n away..I know some people be on steroids for years due to their lupus & its like 40 mg daily so just make sure you take care of yourself...and don't worry about how long u been on them just remember that we are different people with a very nasty hateful disease & we have to be ready for anything...so its like without our steroids we are going to a gun fight with a butter knife..its not going to work we will lose for sure..;)
Hi Jon, hope everything is good today ! I have been on prednisone for 39 yrs...yeah I know that's a lot. I think the most was 75mg a day, an internist had me on that...back then lupus was not as widespread as it is now....my rheumatalogist tapered me down. I've been with him since 1990...since then I've come down to 5mg a day, I get bone desity test every yr & have a great Dr. It took quite a while before I could go down & not flare-up. but we kept working at it. Since there are so many more drugs out there now for lupus, you should talk with your Dr. , inquire what drugs would cause less long term damage to your bones. Also go on the internet & make yourself knowledgeable about meds for lupus...you are on the right track by writing your letter & asking for suggestions ! Take care & be blessed !
to everyone who has replied to Jons post, bless you all.... and i am truly in awe and inspired by the care and support shown here .... you guys are all awesome , may all of us living with lupus grow stronger and well every day with all of our family here xo Jude