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lado123
10-26-2009, 06:58 AM
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
10-26-2009, 07:41 AM
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
10-26-2009, 09:45 AM
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
10-27-2009, 12:31 AM
thanks for the advice Jack & Sangye, I intend to take each day at a time and see how it goes.

Sangye
10-27-2009, 12:45 AM
Yes, that's the best thing to do. Don't let your mind wander into the future or the past!

onatreetop
10-27-2009, 01:12 AM
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
10-27-2009, 01:25 AM
4 kittens, huh? :D 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
10-27-2009, 02:07 AM
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
10-27-2009, 03:48 AM
i know what you mean jack.those vulcans are so lucky.
john.

onatreetop
10-27-2009, 11:22 AM
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.

Sangye
10-27-2009, 11:36 AM
That's a beautiful quote.

I've been doing a fair amount of crying lately being on this pred. Although, it does make me giggle to imagine all of us watching a sappy movie together-- everyone sobbing into their sleeves at every little thing. We'd be in tears before the intro music stopped.:D

onatreetop
10-27-2009, 11:51 AM
You hit it right on the head!!! It would be a sobefest, Sad, fun or action I could cry.

jola57
10-27-2009, 04:26 PM
Mr. Spok how I'd love to have your feelings right now. yeah, I watched a show last night (Sanctuary) and cried like a baby. I was glad I was alone, explaining to my hubby that I'm blubbering because a character in the movie does this and that is not a cool Jola thing to do:o

Doug
10-27-2009, 05:36 PM
I am more emotional than before, too. I don't think it's the Prednisone in my case so much as a greater sensitivity to life and a gratitude that I'm around to appreciate it. Now if that isn't sappy! :)

jola57
10-28-2009, 04:28 PM
I think I went the other way with my outlook on life. I accept things for what they are and am grateful for all that I have, I want more out of my life but agree with less if necessary. I have always been an agreable person and now even more so. Emotionally I am actually more stable than ever, as in I don't dissolve in face of adversity like I used to but approach things rationally. All this is making my family crazy since I always see everyone's sides and never get mad at anyone. Just serenely go about my business. ooooh how it makes them mad.:D But I still cry at sad parts of a movie;)

Sangye
10-29-2009, 01:58 AM
I want more out of my life but agree with less if necessary.

I really like that. Gonna quote you!

Wegs has also taught me to be much more flexible and amenable. I used to fight everything. Now I'm much better at listening and accepting, rolling with difficulties vs making a big scene over them. Not great, just better. I still have some scenes. :)

Doug
10-29-2009, 02:05 AM
I'm more accepting, am a more-mellow-less-abrasive sort of fellow than I used to be. For a time I thought this had to do with drugs I wasd on, but now I realize it's a mindset, not a chemical thing that will go away. I'm more content and work to maximize each day, appreciate each blessing: anyone crying yet???:)

Sangye
10-29-2009, 02:08 AM
*sniff, sniff*

RCOSSIO
10-29-2009, 01:21 PM
I think I am just plain "LOCO"

jola57
10-29-2009, 05:21 PM
That made me chuckle just when I needed it.

Doug
10-30-2009, 03:11 PM
p.s. I got a pound kitty today! That makes you sweeter, too. Tomorrow, I get a pound cat. That doesn't make you sweeter, but you get a hero medal for saving two lives. In time, I shall post photos of the two. The kitty, after listening to dogs in nearby cages bark most of the day for three weeks, was a bit shell shocked, but, by this afternoon, was cuddling and purring and "tasting" me. I still had to make a little tent of a towel in her bed box so she felt a little more protected. The kitty, a dark grey tabby cat, has cute little black dots where her whishers attach to her muzzle, so the top choice for a name for her is "Freckles".

The adult cat and I had an introduction today, with the cat rubbing both sides of its muzzle on my finger (as opposed to eating it, when I stuck it in the cage). He or she (I didn't get a chance to check any "naughty parts", which are irrelevant to me since the vet will neuter or spay both; the cats didn't indicate how they felt about these parts, so I feel free to act! Ha!). The adult cat is a striking orange cat. It's so beautiful, I can't imagine it wasn't owned. The poundmaster said no one's claimed it yet, opening up the chance for me to have it as of tomorrow.

The other thing WG has brought to me is a sense that I should do the things I want to do. Not in bitter resignation to some terrible disease, but in celebration of the life I have despite the horrible disease! Will I live longer than the cats? That's my intention! Ha:cool:! :):p

(p.s. There's a building permit posted on the shelter door. The dogs and cats, finally, will have separate spaces so that cats aren't so stressed out. Yay!)

onatreetop
10-30-2009, 03:45 PM
Congrads fellow rescuer!! My four kitties came from a no kill pound. They were two weeks old when they were found. no mom:(. nursed in a cage. We had the pleasure of meeting them at 4 weeks. They are all different colors and patterns. Three are mostly white but.........cheeto has some orange tiger stripes, fluffy is a calicao with color only by her tail and ears the rest is white, oreo has grey and black tiger stripes with more white. Those three are littermates. Number four was extra special and came from the vet. Jasmine, black and grey tigeress and very tiny. Half the size of the others but a week older. She wasn't fed properly in the begining and her growth was stunted. She will always be smaller. She has the attitude to make up for it. I have given her the nick name Psyco kitty. She is truly gifted or touched someway. I have to say they make great cuddle bugs or you can ignore them and they dont mind that either. They never scream and yell. The messes are mild and they are warm when you feel cold. We didnt get them right away because they had to wait for shots and then we fostered them for a cou[ple weeks before they got fixed. We have enjoyed watching them run and play and sleep and eat. We signed papers after they were all done with the vet. visits. Now they are our friends and hopefully mouse catchers.
One thing I did learn so far was if the first three ingreds in there food are something you wouldnt eat than they shouldnt either.

Sangye
10-31-2009, 01:16 AM
Doug, I'm so happy to hear about your new kitties. Thank you for saving their lives. I can't believe they kept the cats in the same room as the dogs. So stressful for them!

Doug
10-31-2009, 11:52 AM
The second cat came into my life today. S/he will go by Lucy or Algernon ("Al") once I look at her/his "naughty part". Ha! Lucy/Al is a bit bossy, whereas Freckles is a cuddlebunny. I took Freckles over to the care center today, and she was a huge hit! My mother had her on her lap, petting her for almost two hours, and wasn't ready to give her up, though it was time for her (Mom's) supper. Wjhen I came back to the apartment,
which I decided to let Lucy/Al have run of while I was gone, I discovered s/he is a clever cat. She can open drawers, cabinets, shower doors, and
perform open heart surgery using only her claws and teeth. Uh, no, I lied about the last skill, but s/he is pretty clever!:p

Sangye
10-31-2009, 12:17 PM
LOL-- trying to picture your house with your new "Cat burglar."

Doug
10-31-2009, 12:32 PM
I have a photo of each in my scrapbook now. I had lots of difficulties getting a photo of Lucy/Al because s/he has has previous brushes with the law, whereas Freckles was abandoned by her unwed mother, who probably is unaware of social responsibility and the benefits of spaying. The mother lives a couple blocks from where I live, but the shame attached to this unplanned pregnancy preclude birth announcements and revelation of the mother's (let alone the father's...!) identity. Ahem!:eek::rolleyes::mad::(