A rant...

[Sangye]

Widthofacircle, Fosamax is not calcium.

[Widthofacircle]

Sangye
You are quite right. Just read the box. It,s 70mg alendronic acid as 91.37 mg alendronate ....and so on. I am not too well up in these matters but I do know it is to help stop damage to the bones caused by steroid usage and there is calcium in the bones, if you get my logic. Maybe it,s an Irish thing, hehe

[Sangye]

LOL Interesting logic!

[drz]

I for sure hate pred. The mind games it plays, the puffy face and other areas, pressure in the head, wanting to eat all the time, weight gain, it all sucks.

I also hate ctx. Mainly because of my bladder issues now.

And Voriconazole as well. I will be off it in 2 days! YIPPEEEEEE! And hopefully never have to go on it again.

I am with you Phil on the Cytoxan cause of the repeated bladder infections and irritations and bottoming out on the
WBC and infections.

The Fosamax I don't mind too much but often forget to take it and then have to work at taking it the next day. I think my directions only say to drink 6-8 ounces of water or one regular glass. Then I stay up and do grooming and dressing routine and usually the half hour is up before I get ready to make breakfast anyway.

I find the pentamadine nebulizer meds the most hassle. It seem most of the time they screw something up and I have to either wait an extra half hour or hour while they get it sorted out. Twice i have had to come back the next day due to their screw ups. They have only got it perfect three times out of the ten times so far. They keep apologizing and have given me two free lunches of atonement, but I told the hospital apologist that I didn't want any more free lunches or apologies, I just want it fixed so it is done right according to the schedule. She called me today and assured me everything is set for my treatment tomorrow so we will see how it goes. Even when it is is done perfectly it still takes an hour so it is more time consuming. Good thing it is only every four weeks.

[pberggren1]

I think once I get to a lower dose of pred, like 10 or 5, then I will quit the fosamax and just take my fish oil, calcium supplement, and strontium for bone support, and of course eating broccoli and spinach and romain and green peppers and onions and, well you get the picture.

[vdub]

I think if I were taking alendronic acid, I would take it in the morn, and then cook a good breakfast while drinking warm water with a little bit of lemon. Cook the breakfast slowly and correctly while sipping the warm water and catching up on the morning news or reading e-mails that came in overnight. That should just about burn up the required 30 minutes, then hit the coffee while eating the great breakfast.

As far as i know, I don't think I have to taper of pred anymore. When I get done with it, I can just stop....

[jeniban]

i hated taking my weekly bone builder Actonel(risedronate sodium) so my Dr Changed it to a monthly dose. A lot less inconvenient. The Pill i hate the most is pred. The jitters, unable to sleep, weight gain, Poor skin integrity, bruising and the reason i take Actonel, osteoporosis....

[Lightwarrior]

If there is no compelling reason that requires tapering that fast, then it seems it's not worth the risk to do it. When I was originally treated with pred and ctx my lousy rheumy speed-tapered me and that kept the Wegs dog awake. It took 4 more years to get it to sleep and my adrenals never did come back online. You've been on it for awhile. Dr Seo always emphasizes how you have to taper it very slowly when you've been on it for an extended amount of time.

I went to my primary yesterday afternoon and then called my rheumy. He agreed to let me go back up to 7mg and then try tapering at 1mg a month. These last 7 weeks of 1 mg a week have been very tough on me. The people I work with say that I have been spinning. I hope I haven't pushed too hard. I wish I could retire and rest for a while.

[Sangye]

That's a good idea, LW. I wish you could retire and rest, too.

[drz]

I HATE Pred!!

Never wanted to take Steroids but its that or die right? I hate what it does to my body and to my mind. I HATE Pred head, Pred rage and Pred moon face.

I used to be fairly intelligent, well i could construct whole sentences without long thoughful pauses, saying "oh, thingy bob" and could type like a "normal" person instead of mixing my words and spelling things phonetically instead of literally.

I have often told people that i take "stupid pills" They make me look pregnant and make me stupid. That along with the "chemo brain" from the Rituxan IVs and Cytoxan make me feel fortunate that I still have enough cognitive function to be able to even log in here and type anything. Even before the WEGs I had lost 50 IQ points from hypoglycemic episodes so I must be getting close to zero I think.

Like my treating rheumatologist said-- prednisone (steroids) is a horrible drug to give you, especially at the dosages we had to give you, but without it you would be dead now. So we take it and get fat, moody and impaired in our functioning, but sometimes it makes us happy and keeps us alive, right?

Does this ever get any better