It Ends Now.

[NikkiNicole]

I'm off Prednisone completely. I don't exactly know if this is a good or bad thing yet. Since being off it, I feel lousy. I'd been dealing with a mid-grade fatigue for the last few months but now ... it's gradually getting worse. I've been trying to get in an see my ophthalmologist because my vision is weird. I have this nagging ANNOYING fluttery, twitchy thing in the left side of my abdomen.

Of course, I can't help but think a LOT of things have to do with the gift that the prednisone gave me in the form of 50 lbs I didn't have when I first got sick. Ugh, I feel nauseous even saying that out loud. Or ... typing it, as it were. But, it's true. So now, I am facing Mt Everest in front of me. The Mountain that needs to be whittled away so that I can continue to try and slim down and be a healthier me.

In the last few weeks, we started a project to get some heating in the house that involved running new gas lines and all new plumbing. Long story short, they haven't done the gas line to our stove. So I haven't been able to prepare any food at home so I have been eating like CRAP!!!!!!!!!!!!!!!

Well, that ends NOW.

I've laid out a game plan for myself. I have meal plans, I have exercise routines. I will get this weight off. I will be as healthy as I can be. It's all I have control over at this point.

I am done.

[annekat]

Good to hear your thoughts about what you are going through, Nikki. How long have you been off the pred? If not long, it's possible you will get past the present fatigue pretty soon. I speak not from experience, having not ever stopped it after long term use. But your attitude says it all, that you are ready to be off it and you are going to deal with it, eat better, exercise, lose the weight, and get your old self back. I believe you can do it.

It must be difficult indeed living without your cooking stove. If it's going to be awhile longer, maybe buy an electric hot plate or two? Lame, I know. Or one of those Coleman propane camping stoves. Better yet, they get the gas line to your stove in SOON!

Be sure to let us know how things go.

[pwc51]

I have been off pred for 5 weeks now. It is a real roller coaster. In August I was feeling fantastic following RTX in May. I was on 10mg at that time but my Rheumy wanted me off it so I was given a regime to get me to zero in just over 2 months. I got there! However I really don't feel good at this time. The biggest element is increased fatigue. I occasionally feel light headed and there is some low level joint pain occasionally. There is nothing I can really put my finger on though to describe in detail to a physician! I am guessing it is just taking time for my adrenals to catch up so am prepared to give it a little more time.

[annekat]

If I were in your place, PCW51, or yours, Nikki, I don't think I could handle the fatigue and would want to be back on enough pred to help with that. My plan, and my doctor's, is for me to get down to 5mg. over the next couple months, at my own pace, and then stay there fro awhile. I'm at 8mg. now and do get symptoms returning if I reduce even 1mg. Everyone is different.

[Happy Camper]

Glad to hear your off the Pred. hard to get off that stuff. When I'm on large doses of Pred I try and drink alot of water and that helps cut down on the increase in appetite! usually 12 glasses a day! The fatigue seem to get better for me once I was off the pred for a month or so. Good luck

[Pete]

Nikki and Peter,

It sounds to me like your adrenals aren't making enough "natural pred" to keep you symptom free. I was off for six months earlier in this year. Started having odd symptoms (joint pain, hand cramps, lack of energy) that turned out to be markers of a bit of a flare. Now tapering down thru 35 from 60. Will taper very slowly from 20 to see if I can find a low dose that keeps me feeling good. Just something for you to think about.

Good luck and better health!

[gilders]

It is a good thing that you are off Pred. Pred isn't a drug with just POSSIBLE side effects, but a drug that has definite and very unwelcome side effects, especially if you're on it long term.
Personally I have always felt MUCH better off pred. Firstly, I guess it's because I'm only off it once I'm in complete remission so obviously I'm feeling better. But secondly my body really does not like pred, I get many side effects and they can be quite severe.

The only negative I see when I come off pred is the fact that I'm much more likely to relapse/flare. Every time I have come off pred I have managed longer periods of remission - I hope this continues and is a pattern that occurs with other WG patients.