sorry i've not been on for a while.

**crackers** · 05-24-2009, 12:11 PM

i've been feeling really crappy for the last 3 or 4 weeks and i tend to withdraw into my shell when that happens.saw my rheumy last week and she gave me a 1000 mls IV infusion of pred with another one for the next two weeks.also a 6 week course of 960 mg of trimoxazole after which i start on cellcept.i know it's pred fuelled but i feel so much better it's unreal.i'm not sleeping half the day like before and the energy levels are so much higher.once i'm on cellcept will this continue or will i slip back.cellcept users please advise.
john.

**Sangye** · 05-24-2009, 01:55 PM

Hi John,
I missed you! We must both be going through a lousy spell....

I'm fairly certain the increased energy you're feeling is not due to better symptom control, but to the major hit of pred. That's a whalloping dose-- what I started on, so I remember well. Careful-- it's not true energy, as in strength. It's just your body's accelerator being artificially revved. So take it easy. Don't spend that energy you think you have, okay?

I think you'll love Cellcept. Nothing like chemo. The only thing I notice is a little heartburn 1/2 hr after taking it. Cellcept has kept me off pred.

BTW, why did your doc give you such a huge hit of pred? Was your bloodwork showing a flare? 1,000 mg IV is an emergency dose, not something to do lightly.

**Jack** · 05-24-2009, 04:42 PM

Hi, glad you are feeling better, but I have to agree with Sangye. That is a huge dose which I have only had when first diagnosed. It took me from "death's door" to feeling well within a day or so. Not a dose you can live with though!

In my own case, Cellcept has been a great drug. Few side effects and good disease control.

**crackers** · 05-24-2009, 08:16 PM

my crp score was raised and i was a mess mentally and emotionally so maybe she figured i needed a boost.i know my feeling better is down to the pred but i'm just glad to be out of that place i found myself in the last few weeks.
john.

**Sangye** · 05-25-2009, 12:47 AM

John, I'm sorry but I think if that's "all" that was happening Wegs-wise, that doctor did you huge disservice. You need a Wegs specialist. An elevated CRP does not by itself mean crash-cart medicine. Like Jack, they gave me 1,000 mg when I was at death's door. The ICU nurses had never even seen that dose, so that's a clue as to how high it is. A few times I had crises like severe pneumonia, they gave me a shot of 100 mg pred.

I understand the emotional and mental stuff, believe me. But that can safely be dealt with using antidepressants. The imbalance created by the pred leading up to this is what contributes to the emotional mess, so now the doc has just added more.

Pred is different from many drugs, in that it has immediate side effects (eg, increased energy, blurry vision) and long-term ones that keep going long after you've taken a dose or stopped it altogether. This is true for much lower doses, so imagine for 1,000 mg.

Feeling lousy is also not an indication that Wegs is the culprit. I've had viruses that take more than a month to clear up-- the only symptoms were a mild cough and feeling lousy.

I don't think this doctor was/is acting in your best interest. I know telling you all this runs the risk of getting you more upset. I'd rather have you know it than stay with a doctor who either doesn't know Wegs or gave you "shut up" medicine.

When you get a chance, go read the article I posted a few days ago under the title "Interesting Article." It talks about how doctors can tell if symptoms are Wegs or not.

**RCOSSIO** · 05-25-2009, 01:03 AM

I do agree that the high dose of pred was way too much...usually you may have been able to go to 60mg and then reduce 10mg a week.

As far as Cellcept goes I am on my third week...noticed i did get a lung infection after starting it..but not sure if it relates to the switch from Cytoxan to Cellcept. Anyway I feel pretty good but will definitely know if Cellcept works for me after 3 months.

**Sangye** · 05-25-2009, 05:55 AM

John, I thought of something else....With your current history of cancer, it's very important for your docs to use the least amount of immunosuppressants possible-- just enough to keep the Wegs under control. Being on immunosuppressants increases the risk of cancer for everyone because white blood cells called "T cells" (aka "Killer cells") circulate in the bloodstream and kill cancer/abnormal cells. Weakening the immune system means weakening the ability to find and destroy cancer cells. Pred is used for Wegs as an anti-inflammatory and an immunosuppressant.

Also, the chemo drugs (cytoxan, methotrexate, imuran) are direct carcinogens.

These are the risks we have to live with to receive the benefit of treating and controlling the Wegs. But in your case, it's even more important to keep all these drugs to a minimum, or the risk-to-benefit ratio can get out of hand.

Doug · 05-25-2009, 08:05 AM

I can't imagine such a high dose of Prednisone, either, but, Cellcept was a piece of cake, no problems, John.

Richard- does your doctor have you on Bactrim? Perhaps the lung infection is one Bactrim doesn't act on specifically if you do.