Pred question

**Tom** · 12-14-2011, 02:00 AM

Early on in my DX last spring, I was put on 10 mg Pred and then to 40 and then to 60 and stayed all summer except for 2 attempts to taper me off but had to go back to 60 and start for periods of time and finally tapered me to as low as 30 mg for a couple weeks a month or so ago. Because my breathing was going south on the less pred, my pulmo put me back up to 60 mg and began an immediate taper of 7 days at 60 and 7 at 50 ,7 days at 40 and now I am at 30 mg for 14 days as she will be going on vacation and the hope is that I hold stable til after she returns after xmas. Then the plan is to start a taper to 20 mg. That would be the lowest dose Ive had since January of this year. On the lower doses as I said, my breating gets harder and Im on oxygen 24/7 right now, also on the lower doses, I get edema which is one of the reasons my pred dosage was rasied again at one point. I also have kidney disease with the wegs and my nephro says they are funtioning as they are but I need to cut out ALL sodium in my diet because this is in her opinion the cause of my edema and possible fluid around the heart and lungs making it harder to breathe, makes sense to me. The fluid build up is due to my kidneys not being able to do full duty when called upon as I understand how they work. I can rationalize all of this but it seems that when I decrease my predisone, my breating gets worse and my spirometrys are worse, I begin to get swelling throughout my body and now, I have been on the 30 mg for 4 days now and my energy level has gone from 75% to around 30%. I asked if it was possible to be living on the predisone so to speak but no sure about the answers I got other than it helps to get my wegs under control. On the flipside of the decreases, after my dose is raised back up, I see no big reversal of problems. Instead I get more of a stablization of my current condition. My question is, Is this the way predisone is supposed to work? Also is it possible for the lungs and kidneys,etc to work their best solely on the predisone in higher doses, because with out it my health fails it seems? Anybody else with this experience? The Drs knew I was going to be a tough case because of past medical history. Wegs cases are all tough cases to crack but Im not sure if Im losing the COPD battle or if the wegs is not cooperating with the meds or if my cancer is getting its revenge.

**Psyborg** · 12-14-2011, 05:35 AM

Tom, are they treating you with anything other than Prednisone? I'd assume yes, but not sure from your message.

**Chris G** · 12-14-2011, 05:54 AM

Same question here. What is your maintenance drug, and what dose are you taking? Pred alone does not control wg nor will it put wg into remission.

**Tom** · 12-14-2011, 06:42 AM

I have been on predisone since January and started at a 10 mg taper, never got to finish the 7 day pred taper on 10 mg, then all this lobectomy stuff happened in Feb. then the pneuemonia in April ,I guess it was and eventual wegeners dx. I was doing CYTOXAN for 6 months and was just taken of it last month and put on Cellcept, 500mg twice daily, Omeprozol, bactrum, glyburide as well as Advair inhaler, Spiriva, Albuterol rescue inhaler. At my last appointment with the reumy, he wasnt happy with the direction things were going and was going to check with my insurance to see if they weill pay for Ritoxan infusions. He wants to do 2 of them. Not sure when everyone else started their treatment, but mine took a month to start because they wanted all the test in and with my history, they said they had to move with caution so they didnt kill me with the treatment itself. As far as I know they conferred with my present Dr's and involved others from around the country to see if there was a similar case like mine. I know the MAYO clinic was contacted. Im know that the pred wont out me in remission but it feels like it rules the respitory and other functions and Im no sure where I would be with out the dosage Ive had throughout the year. Is it reasonable to assume that I am thriving on the predisone, god forbid. I dont want more of it.

**Chris G** · 12-14-2011, 06:50 AM

It sure sounds like pred has been doing most of the work. But I don't know how that could be possible if you just came off ctx, and had trouble reducing below 30 mg pred while on ctx. I'm sorry, I'm not familiar with ctx or cellcept. Have you had a chest ct to make sure there's not something serious going on in your lungs? For me rtx has made a world of difference. But wow, your breathing difficulties sound very stubborn. How is it coming along with the rtx approval/scheduling?

**Tom** · 12-14-2011, 07:25 AM

Originally Posted by Chris G

It sure sounds like pred has been doing most of the work. But I don't know how that could be possible if you just came off ctx, and had trouble reducing below 30 mg pred while on ctx. I'm sorry, I'm not familiar with ctx or cellcept. Have you had a chest ct to make sure there's not something serious going on in your lungs? For me rtx has made a world of difference. But wow, your breathing difficulties sound very stubborn. How is it coming along with the rtx approval/scheduling?

I think I am having problems below 50 mg and 60 was just a something that made the body beg for more it seemed. Yes Ive had the chest ct's and all.I have been monitored since 2006 ,the time of my colon cancer dx I had 2 lobes of the right lung removed in Feb. due to an obtruction in the airway. The breathing problems are due to severe COPD. I got along fairly well on the cytoxan but the predisone dosage changes seemed to be what stood out for me when it came to changes in my health. I find out tommorow if I can get the Ritoxan when I go to the Dr. It come down to taking the pred for the COPD and the Wegs, and I have kidney involvment and sinus so I have a double whammy on my respitory system. Thats why I have concerns about the use of the predisone.

**Psyborg** · 12-14-2011, 07:44 AM

Hey Tom I found this:

Breathing Problems

Cellcept also may interfere with your normal respiratory functions. For example, you may be short of breath or have other breathing difficulties, Drugs.com states, such as shallow, rapid breathing. You may feel chest tightness, too. Problems with your breathing may increase if you exert yourself, the Mayo Clinic states. Wheezing, or a high, whiny sound, may occur when you exhale. All of these are classified as serious common side effects.

Read more: Cellcept Drug Side Effects | LIVESTRONG.COM

Did the problems start with the CellCept? Could the maybe try MTX or Immuran?

Al · 12-14-2011, 08:09 AM

Prednisone is a strange bedfellow, Tom. You have to love it for the wonders it works, and you have to hate it for the chaos it leaves in its wake. You have enough complications going on that too much taper sounds dicey, but I hear you about the nastiness. I'm not sure how to fit in the COPD. But I can tell you that edema is no fun, and anything to avoid it is desirable. I'm not at zero sodium, but I use no extra salt in cooking. I make up for it with spices and flavorful cooking techniques.

Al

**Tom** · 12-14-2011, 08:31 AM

Nah the breathing problems have been there since before the Cytoxan started but I did pulmonary rehab and came out with new life but with in a couple of months I startedto go down hill on the 60 mg. but it was time to try andreduce it but that taper failed. There is a concern that I need to get down on my pred and I share that concern. The problem with predisone I think is that the body into a junkie,not in the mind sense but the body eventually needs more to operate, since the body makes its own steroid as I understand. Im afraid that I crossed the threhhold while doing the 60 mg early on and expressed it to the Drs because I could feel my breath getting shorter and my energy level was peaking and the more they try to reduce me the worse it gets and then when they try to increase a little ,it does no good but only makes the present condition stable. Thats how it seems to me anyway. I actually lied to myself last week and left the 02 off for a day and a half and finally told the wife that I had been fooling myself and she agreed because she saw me struggling. A couple of weeks ago when I registered on this site, I tried to convey that I have had what I now know as wegs symptoms and have had them for the previous 5 years beginning at the time of my cancer treatment. I may be full blown Wegs and the one good flare up this last winter may be the last straw. I gather from the Drs remark that he dont like the direction things are going and the concern about getting me down on the predisone that maybe if I go all the down to where they want me, I may not be able to cope. Im still up beat and still wont give up, but short of getting hit by the proverbial bus, I am ready for anything and accept it.