medical update

[lado123]

Hello everyone

My specialist seems happy with how I'm doing so far after my visit to hospital on thursday.
He is dropping my pred to 40mg from 60 and continuing with methotrexate. I also have to go for blood tests every 2 weeks and need to have pulmonary assesments early november.

I have no joint pain at the moment which is bliss after enduring it for so long - this makes me feel a bit weird because I keep thinking maybe I should be feeling in worse shape than I do - is this the calm before the storm? having said that I feel shattered everytime I do anything remotely physical and I'm woozy when I stand up - again is this how it is?

The steroids are turning me into a blob but I suppose it's better than the alternative you read about with WG - all a bit scary!

best wishes

lado123

[Jack]

Sounds like you are making good progress.

Remember, this can be a very long journey and you may well have setbacks along the way, but with luck the general direction will be towards getting better. Or at least establishing a New Normal that will give you a good quality of life.

[Sangye]

Glad you're doing well! What you're experiencing now (exhaustion w/ activity, dizzy upon standing) is the adrenal depletion caused by pred. It's been doing that all along. In the very beginning, the pred feels so good because it decreases pain, etc...but it's robbing the adrenals all the while. Not much you can do about it, just don't make it worse by overexerting. That just stresses the adrenals even more.

[lado123]

thanks for the advice Jack & Sangye, I intend to take each day at a time and see how it goes.

[Sangye]

Yes, that's the best thing to do. Don't let your mind wander into the future or the past!

[onatreetop]

I felt the same way in the begining of treatment. I felt sooooooooooooooo much better and energized but moody and scared. I thought, shouldn't I be feeling worse with this load of meds? Then I started using the energy in different ways. It was almost like nesting really. Now I am on a lower dose of pred. and wish I had half the energy I did in the begining. Went from 60 to 15 in four monthes.

I take one day at a time and some days I get everything done I set out too. But others I just say forget it! I need a nap.

I did something pretty crazy while on the high meds, got four kittens for my kids. Crazy right!! I started to feel that there wasn't enough caring or love and effection in our family. I have to say there is a lot more of all of the above now. The kittens are a good distraction and give me the opertunity to sit for a change. Things are more relaxed now.

[Sangye]

4 kittens, huh? Yeah, the high dose pred makes you think you can lift cars!

Pred induces bipolar (manic/depressive) types of brain chemical imbalances. There are a gazillion factors involved and it's unpredictable how pred will affect someone. But the 2 emotional extremes are always present. This doesn't mean everyone on pred now has bipolar syndrome and requires treatment for it, of course. The mood swing in either direction may not be great enough to require intervention.

In some people the "high" predominates, and in others the depression does. Each time you go on it again it will be different. Right now my body (and mind!) react to 5 mg as if it were 30 mg.

The "high" part of pred isn't always perceived as a problem by the patient or the people around them. It gives you lots of energy, makes you happy, etc.... You can work many hours and not sleep much.

The imbalance caused by pred can correct itself eventually but sometimes it never does. It's common to have lingering depression.

[Jack]

I think I have mentioned before that I am now much more emotional than before Wegener's. I put this down to the pred although some of it could just be the strain of long term illness. I used to be the "solid as a rock" type who could handle anything, but now I can cry at the drop of a hat! It's not that I'm depressed (or at least, I don't think I am), but my emotions are not as in check as they once were.

[crackers]

i know what you mean jack.those vulcans are so lucky.
john.

[onatreetop]

There is more than one reason, nerve pain was the first reason, that the RA put me on Cymbalta then. He may have been thinking ahead? Yes I know I was swinging badly but that was really bad. Losing it didn't take much. I did warn my husband and family after I looked up all of the side effects. I told them that I might be a little off, that was a big understatement. But the big mg's are done for the moment. Thank the energizer bunny!!!
Like you Jack, I was the rock for everyone I know and family, but now............................it all depends on the day as to how I handle things. It is draining to try and be strong for other people now? The level of streghten is limited then I cry when it's gone. Oh well, another day another try.

One of my favorite quotes, I have always delighted at the prospect of a new day, fresh start, with perhaps a bit of magic waiting somewhere behind the morning. Priestley. Just a thought.