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crackers
05-24-2009, 11:11 AM
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, 12:55 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, 03:42 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, 07:16 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
05-24-2009, 11:47 PM
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, 12:03 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, 04:55 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, 07:05 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.

RCOSSIO
05-26-2009, 12:58 AM
He has me on 500mg Bactrim twice a week...but you know opportunistic infections is very common. I see him on Wednesday...will advise

Doug
05-26-2009, 06:02 AM
He has me on 500mg Bactrim twice a week...but you know opportunistic infections is very common. I see him on Wednesday...will advise


Yes, the shingles hit me like a brick. BFF!

Jack
05-26-2009, 06:16 AM
I take one every day and have done for years. Not had any problems with it, but I understand that some people react very badly indeed and it has been withdrawn in some countries.

Why the red font these days Doug?

Doug
05-26-2009, 09:19 AM
Why the red font these days Doug?

Clarity. Quotes and responses need a bit more separation than they have so people aren't accidentally branded with the remarks of another, such as happened the other day when I went into a rant on research papers should be free for Weggies. I could go blue and have the same result! (Or color the quote. :)) Though I do like red more than blue. None of the other colors, with exception of black or black bold, look right to me. After vertebrate paleontology (part of my minor at Uni), typography (in my major) was my favorite class. I will mess with those tools made available. I doubt typography involves a California job case and a pica stick these days, but what's available now is a cornucopia of fun.

Jack
05-26-2009, 03:48 PM
O.K. Point taken. :D

Doug
05-30-2009, 11:52 AM
YouTube - Wegeners Vasculitis Auto Immune Disease (http://www.youtube.com/watch?v=zN0PC1b9My4)

This video has an excellent testimony about WG and how one lady came through it. I forewarn all non-Christians, however, that there is a very strong Christian message that starts at 2 minutes 36 seconds. The lady talks very fast, so you may have a little bit of the message waft over you: don't convert for my sake! Ha!:):) (The trick is to cut it off at 2 minutes 35 seconds.)

JohnL
06-09-2009, 08:56 AM
I had GI difficulties with the 500MG cellcept tabs - but not with the 250 MG caps - same dose

Sangye
06-09-2009, 10:11 AM
Very interesting, John. I take the 500 mg tabs at home, but when I'm hospitalized they usually only have the 250 mg caps. I've noticed I don't get the same heartburn or diarrhea while in the hospital and wondered if it could be the different form of Cellcept. I just got a new month's supply, but I'm gonna ask about it next time.

RCOSSIO
06-09-2009, 10:47 AM
So far so good...500mg 6 x times daily...

jola57
06-12-2009, 01:33 PM
Great Richard, how many days now?
I'm to see my rheumy tomorrow. I think I will ask to postpone the Imuran until August. I have to go back to Europe in July and don't want any unforseen problems. I'm down to 15 mg pred and beggining to feel just a tad achy in joints, so i am hoping its just a phase.

Doug
06-13-2009, 12:34 AM
YouTube - Wegener's Granulomatosis (http://www.youtube.com/watch?v=cZm2DT46hS4)


Here's another really excellent video on WG. There is some salty language in it, but the young lady describes the whole gamut of issues surrounding WG, from what it is like to deal with doctors as a black woman, for that matter the whole process of diagnosis as a person of color (since the majority of people who have WG are caucasian). It's 10 minutes 32 seconds long, but I think you will find this weggie does a pretty decent job to orienting people to the whole world of
weggies. She invites other weggies to contact her, and I intend to take her up on it, perhaps get her involved in this forum.:)

RCOSSIO
06-13-2009, 06:32 AM
Feelng good so far...Cellcept seems to work