PDA

View Full Version : Cellcept & Questions about what happens when you step off Prednisone???



wgrebel
07-25-2010, 06:42 AM
I have just begun my first Rituxan treatment and I was able to tollerate Rituxan with no reactions. I have three more infusions to go & then I am going to be placed on Cellcept as my maintenance drug. My rheumatologist and specialist are also going to step me off the prednisone after the Rituxan infusions are complete. My questions:

What is Cellcept & how many of you have taken this drug? What are the side effects and how did you tollerate the drug?

When those of you who were stepped off the prednisone went through the process, how much was the step down, example was it: 60 to 40 to 20 or was it 60 to 55 to 50 & so on? It is my understanding you go on methotrexate when you are off preds & I would like some input on this. I am feeling better after my last hospital stay (got out Wednesday 7/21) after eight days. Still kind of weak but doing much better. The most wonderful news we received in the hospital was that my heart, which the WG attacked in March and caused me to go into CHF, is now back in the 50-65 percent range which is really good!!!!! It was at 20 percent in March 2010.

WG Rebel
:)

elephant
07-25-2010, 06:47 AM
WG rebel that is great news about your heart. I take cellcept 2000 mg a day, no side effects yet...been on it for 16 months. I am still trying to get off prednisone.
The prednisone taper is somewhere on the forum. Just look up prednisone taper. Hope you tolerate it too!

Jack
07-25-2010, 06:56 AM
I have been taking Cellcept in its Myfortic formulation for many years. I've had no serious side effects and it has stopped my tendency to relapse. A good drug for me anyway! :)

Tapering Pred usually becomes a problem when you get down to the region of 10 mg. This is the point at which your adrenal glands have to start doing some work again and they may be reluctant. The exact point varies between individuals, for me it is right on 10 mg and I can't get below this because my adrenals are now shot. :( Of course, there is also the possibility of Wegener's flare occurring before the lower dose is even reached. If this should occur, you need to react fast and up the dose again.

Sangye
07-25-2010, 07:38 AM
I was on 2,000 mg Cellcept for 2 years and tolerated it well. (I went on 3,000 mg for a month or two, trying to stop a flare) The only side effects I had were heartburn for about 30 minutes after taking it and chronic diarrhea-- a common side effect. They even call it "Cellcept diarrhea."

I don't remember how I tapered off those high doses of pred.

Jack, I don't think the adrenal dependency aspect comes into play until you get to about 5 mg, maybe 6 or 7mg in some people. Some people's adrenals are permanently dependent on 5mg or below. Tapering off the last 5mg is the most delicate.

The 10mg stuck point has more to do with the Wegs itself. Some people can't tolerate a lower dose without the disease flaring up. Dr Seo said it was common for those with sinus involvement to be stuck at about 10mg because sinuses kick up on lower doses.

Wgrebel, I never realized your screen name was WG Rebel. I thought your last name was Grebel! :D

pberggren1
07-25-2010, 10:26 AM
There is Sangye's humour again. Hey, we are all rebels!

wgrebel
07-25-2010, 10:40 AM
LOL, G Rebel :) I am just glad that I am off the Cytoxan and have found the right doctors to care for me. I dread the Cellcept Diarreaha. I am presently on prescription strenght Prevacid for my stomach. What kind of stomach meds do each of ya'll take? I have taken Protonix in the past but the Prevacid works really well.

W G Rebel in MS & as stated above were are all rebels :)

pberggren1
07-25-2010, 12:00 PM
I have been on Cellcept for about 19 months and never experienced diarreaha.

elephant
07-25-2010, 12:33 PM
I am on nexium every other day and no diarrhea, but I take culturelle for the stomach too.

Sangye
07-25-2010, 12:45 PM
Maybe you won't get the diarrhea. I drank aloe vera gel each day and it helped a lot. I'm now allergic to aloe so I couldn't do that again.

I only take protonix when I'm on over 4 mg pred. It's necessary with pred. Otherwise, my meds don't give me heartburn and I balance my stomach acid naturally. Unless you specifically need an acid-blocker because of the meds, it's usually doing the exact wrong thing for the stomach. Most heartburn is the result of insufficient stomach acid, not excess.

Jack
07-25-2010, 06:35 PM
I switched from Cellcept to Myfortic because it is slow release and supposed to minimise the bad effects on your digestive system. I can't say that this worked for me, but perhaps I would be even worse without it.

Sangye - you are probably right about the critical Pred dose being closer to 5mg and this is what I used to quote when answering these questions, but some people seem to run into problems earlier so I now use 10mg as the point at which it is possible for trouble to start. I suppose I think that I am just forewarning them. ;)

Sangye
07-25-2010, 10:52 PM
LOL-- 10mg is definitely the "heads up" dose. :D

elephant
07-25-2010, 10:55 PM
Jack I think if you have ears/sinus involvement it is hard to get to 5 mg. That is what my WG specialist said....so I am now on 8 and will stay there for awhile. I think if I bumped my prednisone to 10 I would feel better ear/sinus...but don't want to do that right now.

Sangye
07-25-2010, 11:03 PM
Elephant, I have a theory that some of you sinus folks might be able to knock a mg or two off your pred dose by using anti-inflammatory supplements and really working to keep the Fire element under control.

A few months ago as I was tapering down from 4mg, I noticed the effects of those things much more than before. For example, on 4mg pred I could eat this much Firey food and still not have joint pain. But if I did it at 3mg, I had pain. I also added in more anti-inflammatory supplements the lower I got on pred. It made a big difference.

Jack
07-25-2010, 11:06 PM
Please explain anti inflammatory foods for us Sangye.

elephant
07-25-2010, 11:13 PM
Sangye what supplement do you use? My problem is that I continue to get sinus infections...my left maxiallary is damaged, I use the nasal rinse twice daily. I always sound congested, I can't taste/smell that great in the morning. I know my problems are very minute compared to the others on the forum.

Sangye
07-26-2010, 12:36 AM
This (http://www.thedietchannel.com/Anti-Inflammatory-Diets.htm)article has a nice explanation of anti-inflammatory (and pro-inflammatory) foods and how it works.

Since Wegs is an inflammatory disease, we're more sensitive to any increased inflammation caused by diet. It's like scratching a sunburn. We can't cure Wegs with an anti-inflammatory diet and supplements, but we can tip the scale more in our favor.

Sangye
07-26-2010, 01:04 AM
Sangye what supplement do you use? My problem is that I continue to get sinus infections...my left maxiallary is damaged, I use the nasal rinse twice daily. I always sound congested, I can't taste/smell that great in the morning. I know my problems are very minute compared to the others on the forum.
Hey, chronic sinus stuff is no small thing. I can't imagine how you cope with that.

The supplements I take for this (I take a few others also):
Fish oil--anti-inflammatory
Black currant seed oil--anti-inflammatory
Anti-oxidant mix-- scavenges free radicals that are created by inflammation
Superoxide dismutase-- enzyme that is both anti-inflammatory and anti-oxidant.

elephant
07-26-2010, 01:37 AM
Thanks Sangye.

Lightwarrior
07-26-2010, 05:30 AM
Fish oil is also great for lowering your triglcerides, beats the antilipid medications if you can avoid since they have so many side effects and don't we all have enough meds with enough side effects already?

pberggren1
07-26-2010, 06:37 AM
I already take a lot of fish oil capsules every day. Thanks again Sangye.

drz
07-26-2010, 06:48 AM
Sangye what supplement do you use? My problem is that I continue to get sinus infections...my left maxiallary is damaged, I use the nasal rinse twice daily. I always sound congested, I can't taste/smell that great in the morning. I know my problems are very minute compared to the others on the forum.


How many people use a nasal rinse on daily basis? My ENT doctors recommended it long before anyone recognized nasal symptoms as being related to WG disease.

Jack
07-26-2010, 06:50 AM
I only needed to use a rinse when I had active disease. My nose (horrific, bloody, crusty mess!) cleared up with the other Wegs symptoms.

drz
07-26-2010, 06:52 AM
Hey, chronic sinus stuff is no small thing. I can't imagine how you cope with that.

The supplements I take for this (I take a few others also):
Fish oil--anti-inflammatory
Black currant seed oil--anti-inflammatory
Anti-oxidant mix-- scavenges free radicals that are created by inflammation
Superoxide dismutase-- enzyme that is both anti-inflammatory and anti-oxidant.

How do your doctors feel about you using such supplements?

I used to take some of these but when i ended up with all new meds for treating WG I stopped all supplements because I didn't know how the supplements would interact with new meds and didn't want to do anything that might interfere with my treatment.

pberggren1
07-26-2010, 06:58 AM
I use a nasal rinse every day. Actually I use a WaterPik to irrigate my nose. It works very well and I highly recommed it over anything else if you have a lot of mucus and crusting and/or bleeding.

Jack
07-26-2010, 07:08 AM
How do your doctors feel about you using such supplements?
I think that in general, dietary supplements are OK, but anything more towards the medicinal side should be avoided.

Sangye
07-26-2010, 10:32 PM
drz, I've posted a lot about using supplement and holistic remedies/treatments with Wegs. The most important things to avoid are stimulating the immune system or detoxing. Using nutritional supplements is more complex than you think. Even without Wegs, you really should have a holistic physician consulting you on it.

The supplements I listed above are perfectly safe with Wegs. In addition to being anti-inflammatory and a source of essential fatty acids (needed for multiple biochemical processes), fish oil has anti-coagulant abilities. Weggies are 23% more likely to develop blood clots. Having our blood on the slightly less coagulated side is a good idea. Keep the fish oil to a normal dose: 2,000-3,000 mg/ day. If you're on a blood-thinning medication, you might notice your INR is a little higher if you take fish oil daily. Easy enough to adjust through diet.

Get a good quality fish oil supplement. Most in the health food store are full of mercury and other heavy metals. It doesn't need to have other fancy stuff in it.

drz
07-27-2010, 02:00 PM
Is taking any thing that might thin your blood likely to increase risk or severity of bleeding from WG? I am told that at times I am still bleeding in lungs or kidneys but not heavy like I did when first diagnosed so it is getting better. If my blood was thinner, wouldn't I be likely to bleed more at those times? Just wondering? I haven't asked my rheumatologist about such supplements.

pberggren1
07-27-2010, 02:20 PM
That makes sense to me drz. If you are still bleeding in lungs or kidneys that doesn't sound right to me.

drz
07-27-2010, 02:50 PM
That makes sense to me drz. If you are still bleeding in lungs or kidneys that doesn't sound right to me.

I am still working on getting the WG under control and am still a ways from any kind of remission. I hope to get there eventually. I was just delighted to stop coughing up blood and to get out of ICUs and inpatient hospital care where I spent most of the past three months.

elephant
07-27-2010, 09:35 PM
Drz in time you will get in remission, you are already progressing in the right direction...no coughing up blood! That's pretty good. :)

Sangye
07-27-2010, 11:09 PM
Drz, the cause of the bleeding is inflammation of the pulmonary capillaries. Fish oil is anti-inflammatory.

I've had pulmonary hemorrhaging while being on actual blood thinners, and my Wegs doc was not overly concerned. The anti-coagulant properties of fish oil are not nearly as powerful as blood thinners.

Medical docs know about fish oil's anticoagulant properties. Just make sure your doc knows that you're taking it, and how much.