Woo hoo! I can’t believe it! Today marks 1 WHOLE YEAR without Prednisone (steroids)! I’m so excited! This is a really really big deal for me.
My whole life changed the day I was diagnosed with lupus (had already been diagnosed with multiple sclerosis in December 2002) in August 2010. I IMMEDIATELY started feeling better when I was put on a regimen of 20mg of Prednisone that would be gradually tapered off over time. I scoffed at my Rheumatologist when she mentioned that she wanted to put me on Prednisone and was I okay with that because “it’s kind of a high dose at 20mg”. I mean, I figured that was not high. Come on now. Try taking mega doses of IV steroids (Solumedrol) up to 1000mg (a day!) during an MS exacerbation that requires a three day hospital stay to make sure my body doesn’t go into shock due to the crazy amounts of steroids pumping through my system. That’s a high dose right? 20mg sounded like nothing.
Ha! The joke was on me. It wasn’t like she just put me on 20mg of Prednisone and then took me off of it when the time seemed right. I had also taken up to 60mg Prednisone during a few different upper respiratory infections during my life and the doctors would taper me off to 40mg and then 20mg and I think that was it. After that I just had to deal. No matter that I might crash. No, what my Rheumatologist had me do was take 20mg for a week to see how I felt on it and then come back for a follow up to see her and tell her how I was. She didn’t want to tell me anything else except that MAYBE I had lupus but she didn’t want me to think about that just yet. Her goal was to help me feel better. If I did feel better and finally felt some relief then she’d go forward and give me a lupus and/or mixed connective tissue diagnosis (takes awhile to figure out if the body actually has the MCTD) and we’d go from there.
Oh my goodness! That first pill and first dosage changed the game completely!!! My relief was unbelievable! I expected to be feeling better to an extent since it is an anti-inflammatory medication but I felt loads better. I can’t describe it. I actually felt like perhaps I could live my life. And that was just one day. And after a week of that kind of relief and very slow but improved release of inflammation, I started to get ready to have lupus and I was really thinking this could help.
At that next appointment my Rheumatologist listened to my description of symptoms and how I felt first and then confirmed that I either had lupus or MCTD (which was a blow to me mentally but that is all for another Blog. Trying to stay on topic.) and that she not only wanted to start me on a specific lupus medication called, Plaquenil (that one wouldn’t really start working until about three months later), but that she wanted to start me on a regimen of a taper down schedule to start/continue at 20mg Prednisone for at least two weeks and depending on how I was feeling I’d taper down to 17.5 mg, then to 15 mg, then to 12.5mg, then to 10mg and once I got to 10mg she told me that I’d have a harder time getting my body to let it go so we’d go down 1 mg at a time very slowly. Ideally each taper down level would take two weeks for me to adjust and then I’d change everything all over again and go down to another level and take two more weeks and so on. So what she really meant by high dosage was that it was a high dosage for a longer amount of time than just three days basically. Alrighty then. That makes more sense now that I’ve gone through it. And wow, that was a lot to keep track of with the schedule and I just about needed to hire a manager to handle the schedule for me.
That didn’t happen with me. It took me longer sometimes to adjust. It really depended on what was going on with me (I had numerous other doctors at this point trying new regimens and medications and my body was constantly trying not to be in an uproar about all the changes and needed some extra patience and love). One of the hardest to adjust to I believe was going from 15mg to 12.5mg, 8mg to 7mg and then the change from 2mg to 1mg. My body and mind had a REALLY hard time letting go at the end. It was scary. This was my safety net when things were hardest. I knew I could get at least some relief. What about when it was gone? My body wouldn’t be able to depend on it and I’d need to find new ways to heal. It gave me so much immense relief in the beginning because my inflammation was so bad. I really did have so many moments of, “Oh! That’s what life is like when I have just that much more energy! OH! You mean I don’t have to feel like this (crappy) all the time? I can feel better?”.
My doctor had the timeline down for how this should work. She said generally her patients take about nine months to a year to wean themselves off of Prednisone. It is very easy to be dependent on the drug so the idea is to get off of it as soon as its physical benefits have kicked in so that you don’t get too used to it but also because its side effects aren’t too fun. (My side effects included stomach problems, mood changes, hormonal issues and it can also cause bone loss and who wants that?).
She told me once I was at six months on the taper down regimen, I’d start to feel like just maybe I could “do this”. That I’d really feel like I might have an understanding of what a good “baseline” is for my health and I might get some clarity. It was right around six to seven months when that happened for me. Then she said that at nine months I’d start to be able to feel like I could live without it and there might just be a “normal” somewhere. She was right on it. That is almost exactly what happened. She coached me through the entire way and didn’t drop me once. She had said straight out in the beginning that I had no choice but to work my way off of it once it had helped me “feel better” when I first started it. I really think a lot of her for all of the attention she has given me. She is the reason I finally found some answers after desperately searching for what the heck was also wrong with me in the summer of 2010 besides just MS.
And then once I was off Prednisone I was okay. I made it. Well apparently I did because here I am a year later and I’m alive and kicking. Well, not kicking as high or as much as I’d like to but I’m getting there. Some days are harder than others. Interestingly enough, after about six months off of it a lot of other more minor health issues started showing back up again because they weren’t being masked by the Prednisone anymore. That’s definitely been frustrating but each of my doctors assures me that this is all a positive thing because it means the more major health issues have calmed down a bit. Yeah well. I guess.
And as for that specific lupus medication, Plaquenil, once it started kicking in after about three months I think that’s when my body started feeling like maybe, just maybe, I might not need the Prednisone anymore. I’m still on the Plaquenil right now and there is no plan for me to stop taking it any time soon. That’s okay with me I suppose since it has helped me so much.
So there it is! 1 WHOLE YEAR OFF PREDNISONE! I took it one day at a time. That’s all I can do anyway. Who knows? I may need to go on the Prednisone in the future but today I don’t have to and my Rheumatologist confirmed it today at a doctor appointment so that’s even better! And in honor of the 1 Year I’m going to write the birthday song but make it appropriate for the celebration:
Happy 1 Year Off Prednisone To Me!
Happy 1 Year Off Prednisone To Me!
Happy 1 Year Off Prednisone Dear Me!
Happy 1 Year Off Prednisone Go Me!!!!!
And many more…..!!!!!
CONGRATULIONS Nahleen for being OFF of Prednisone for 1 year!!! It’s a tough thing to get off of particualrly when it makes you feel so good. Like I tell all my patients that it’s a great rescue drug, but not a good long term drug.. Lots of folks don’t stick with the wean and end up just staying on a low dose, which as you know can cause lots of other issues too. So good for you for sticking with it…