A rant...

[Kathie28]

I have to go with the pred it is the worst. First of all if you don't get it down with the first swallow it tastes terrible!!! But then there are so many side effects. Right now my feel are swollen like I'm pregnant and my legs feel like they are made of lead. There is no way I can walk up stairs. In 2 more weeks I can drop back to 30 from 40 and I am counting it down. I was doing okay at that level but when I bumped up to 40 the lead weights came back just hate it.

[Sangye]

I'm so sorry Kathie. Stinkin' pred.

[Sangye]

I'm on 5mg pred. When's your next rtx? I love that you're noticing some improvement. Makes me feel more confident about the improvement I've noticed in my own symptoms - especially the clearer head and better energy level! It's still a little up and down - was not so great Friday and Saturday, but today I felt weggie great, too!

I love that-- "Weggie great." Definitely a keeper.

[vdub]

"Weggie great."

Yeap, gotta agree. Great quote! I believe i will pilfer that phrase if you don't mind....

[Cindy]

I take Actonel once a month. I get up take my Cellcept, shower and do chores, then drink my coffee, wait one hour, then eat breafast, wait two hours, then take the Actonol, drink bunch of water, go work at the computer for two hours, then eat lunch. Of corse there are various other meds in the mix. It's all about timing . . . .

Oh, and let's not forget the round of meds that start at about 5 PM and continue until I go to sleep.

When I tell people how many pills I take they just look at me and stare

[Chris G]

I'm on 5mg pred. When's your next rtx? I love that you're noticing some improvement. Makes me feel more confident about the improvement I've noticed in my own symptoms - especially the clearer head and better energy level! It's still a little up and down - was not so great Friday and Saturday, but today I felt weggie great, too!

Agreed....."weggie great" is a keeper.
I'm still at 20mg pred (booooo, hisssss), because the damn mtx wasn't working for me. So, I think I have a long way to go before I get off both the pred and the mtx (20mg also). They said they want to get me off the pred first - makes sense - but if the mtx isn't working anyway, let's ditch that too! (that's just me complaining.......I'll do what I'm told).

Today I feel a bit "foggy" and off balance, but i'm sure it's from the mtx last night.

My 2nd rtx infusion (of 2) is this Friday. I hope it doesn't make me feel crappy like the first one did - that inracranial pressure was a killer! What was that all about?!?!?!

If we're voting on this "rant" thread - my vote for worst drug is PRED !!! I both love it and despise it.
With the humidity increasing, I sometimes do my hair differently - back off my face......now when I look in the mirror, all I see is CHIPMUNK CHEEKS!! Although I love the little furry critters, I hate the cheeks on me!

[Lightwarrior]

Agreed....."weggie great" is a keeper.


Today I feel a bit "foggy" and off balance, but i'm sure it's from the mtx last night.



If we're voting on this "rant" thread - my vote for worst drug is PRED !!! I both love it and despise it.
With the humidity increasing, I sometimes do my hair differently - back off my face......now when I look in the mirror, all I see is CHIPMUNK CHEEKS!! Although I love the little furry critters, I hate the cheeks on me!

I agree that Pred is the worst drug. I am grateful it saved my life but the side effects are harsh. i have not been a slim woman for too many years to count now, but the pred has made my size go from bad to worse. Yesterday I wanted to cry because my doc ordered an MRI of my shoulder and guess who couldn't fit into the MRI machine???? I was soooooooo embarrassed. I wanted to cover my face with ashes and hide in a cave (yes, I know that's a bit extreme and I didn't do it)

[Daggar]

Pred - for what you can see
CTX - for what you can't

[Chris G]

Oh Lightwarrior, I'm sorry, that must have been very distressing for you. I'm glad you didn't choose the cave!

I'm all too aware that I look terrible - I see people at work staring at me, and surely they're thinking "wow, she really let herself go!". And, ok, yeah, I had put on a few lbs BEFORE I was diagnosed. I used to think that I had been really lazy the last few years, but now I think it was the disease sapping my energy all along. I know that it's not possible for me to exercise right now, so I try to concentrate on getting better......I look forward to the day when I am able to get off the pred, get some exercise, and shed some lbs. Until then, I try to ignore it as best I can, and look to the future. Maybe I'm fooling myself, but that's how I get thru it.

[delorisdoe]

I have so far skipped 2 school reuinions. I just dont want to feel like I need to tell them why-i hate telling people why.