Weaning pred question

[marta]

Hey gang,

Quick question - or not knowing me.

I'm weaning off the evil pred and feel like I am constantly energy depleted. I'm at 6.5mg going to 6mg next week and probably go at that rate (.5mg per month) for a while. I am achy, completely useless as far as energy goes, and dragging my butt around like it belongs to someone else - who's passed out (i.e. dead weight).

I just read a post by someone on Facebook who's at 2.5mg and is feeling the same. Does this mean I'll be conceivably feeling like this for the next 9 months? Wow, that would really suck if it's the case.

Just wondering what your experiences were and also if you have any tips that helped mitigate the "hit by a truck" feeling that I'm so not looking forward to dealing with for the next 9 months. I know that everything takes time with this disease, but I find this is probably the hardest thus far and knowing how long it will last makes it hard on the brain as well.

Just looking for some insights as this is one aspect of the disease process I haven't experienced yet and am not super keen on.

Thanks.

[pberggren1]

You have been tapering slow and conservative which is good.

Did the truck hit just recently? If so then you may have to go back up to 7 or even 8 for a while. Some can have a very rough time tapering anywhere from 10 to zero. How do your labs look?

I remember Sangye going to see an endocrinologist about switching to hydrocortisone. It is more like our bodies natural one so it is easier to taper off than pred. I'm not sure how much Sangye is on now. She would know more about this than I. Give her a shout and see what she thinks.

[Psyborg]

My first time around at reducing I felt like that constantly. This time around I feel like the remission is more real because the pred reduction is going easier this time. I do definitely feel tired a lot but some of the pain I had last time isn't present this time...other than when the weather changes.

[Al]

Of course, Marta, there could be other explations. In the first place, the recent RTX stuff could be playing a role. Also, it is a clear fact you have been busily busting said butt lately. Perhaps it is really a matter of utter exhaustion. However, your pred dose is at that suspicious level: at the point the adrenals need to kick in. " (I have personally had trouble at the 7.5mg point.) I recommend reporting these observations in to the doctor.

Al

[Sangye]

That's how I feel every day, tapering or not--seriously.

It's probably not an option (or a good idea) to switch to hydrocortisone. You can only go on HC if don't need pred to control the Wegs at all. Also, you would only go on HC if you have to stay on steroids for adrenal reasons or to taper at very low doses.

How long have you been on pred, Marta? And what dose have you mostly been at?

[Red]

Me to i have no energy pred free 7 months !

[marta]

Thanks guys. I feel like I had a bit of a mental breakdown yesterday (first one in many months - maybe even over an year). I just feel like I can handle all of the crap that comes with the gig, and I can usually muster enough energy to get things done, but of late it's been impossible, and the constant aching is keeping me from getting on the treadmill or anything else to try and regain my old body back. It's really playing a number on my brain, mostly because I imagined that as the pred went down the condition would get progressively better, but it's not, I was much better a few months ago.

Al, I don't think it's from the RTX. My experience with that has been that it wipes me out for a day or two afterwards, but nothing significant beyond that. I was also thinking that perhaps going full out on February 29th for PJ Day might have used up my energy reserve, but I don't have functioning adrenals, so no energy to be used up. I have been dealing with a cold pretty much since then - now it's very low grade and just the occasional dry cough, but I imagine that might have something to do with it, but I'm quite certain that it's the pred.

Sangye, I can't imagine feeling like this for over four years or is it five now for you? That's insane. My heart goes out to you. You have had a gross go at this gig and yet you're still here helping people every day - thank you.
I don't think I would switch either. I know I just have to suck it and go through with the path I'm on. Kinda like running a long race. There will be walls, there will be mental blocks, but many others have gone through, so I have to do it too, right? I've been on pred since May 2010. Started at 60mg got down to 12.5mg by October 2010 when I had the flare, back up to 1500 for three days then 60mg and then it's been a very slow wean since then because we couldn't get it under control. My current doc is very conservative with the wean, which has been relatively painless and un-noticable until now. I trust her completely.

I know there is nothing to do except for put my big girl panties on and go through this gross wall, but I was hoping that some of you might have some coping mechanisms you've created for this part of the 'recovery' process. My dad said it was the worst thing in his life when he had to wean off pred last fall - he wouldn't wish it on his worst enemy. I think too that when I was sick sick, I had arranged for the regular everyday things to get done in various ways, and I wasn't working. Now I'm trying to get back to work, and dealing with a five year old, and her friends, and school and taking care of the home and I feel like I have less energy than I have throughout these whole two years. It's a bit demoralizing as well as physically difficult.

Thank you all for your words of encouragement and support. What an amazing group of people you are.

[Geoff]

Hi Marta,

Sorry to hear that you have hit a 'road block', especially after the 'highs' you have been on recently. It reminds me of last August when we were getting ready for Emily's wedding (in your case Rare Disease Day). I was cranked up and firing on all cylinders, then like you, straight afterwards, I went down with the worst cold I have had since DX. Its true to say that we have to be mindfull of the limited battery energy available to use as a result of this illness. As Phil and Al have intimated, perhaps a blood test to put your mind at rest and then give that brain a rest for a few days and regroup!!
The battle with the mind is as important as the pure medical stuff I believe in dealing with WG.

Good luck my friend!!

[marta]

Thanks Geoff. I remember you getting sick after the wedding. It was a huge surprise to me as I'm sure it was to you because things seemed to be going so well before.

I don't know if I'm being optimistic or naive or Polyannaish, but I refuse to believe that this is anything more than the pred wean. I will go out and do a blood test today or tomorrow just to make sure my liver is not causing the fatigue, and that will put my mind at ease from that perspective, but I think it's all the evil pred wanting to be my life partner and fighting with all it's might to do so.

No kidding about the battle with the mind. I seem to be on top of that most of the time, but yesterday there was a bit of a knock out from the opposing team. It seems like whenever that happens and my mind takes a beating, I end up on here for support from my friends that know exactly what I'm going through. I also try not to complain too much at home as I don't want to add any more stress to my loved ones than I already have. It's usually stuff they can't do anything about anyways, so why make them and me feel crappy if it's not necessary. So unfortunately for you, I end up on here when I feel defeated. Sorry.

Thanks Geoff and everyone else. I'm more thankful than I can express in words.

[Sangye]

Marta, do you feel unusually sleepy in the afternoon? If so, that's a sign that your body can't tolerate the lower dose. If it's just fatigue due to the pred taper it should ease up within a few days--less than one week.

You may have to taper even slower at times. It doesn't mean that you'll have to go that slow at every drop. During my last taper I was able to leap down from 10mg to 6mg all at once with no problem, but I had to crawl from 6mg to 5mg.

Also, pred causes imbalances in the brain chemistry. I can always tell if I've tapered too low or too fast if I start getting depressed and feel hopeless. As soon as I notice that, I increase the dose and it eases up. I suspect it may be a useful indicator for you too, Marta.

I've been feeling like this for nearly 6 years (it'll be 6 in June). It's really hard to take!