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brandichi
03-21-2009, 02:27 PM
Has anyone been prescribed CellCept for SLE, with no kidney involvement? My rheumy has only prescribed Plaquenil, and it's helped a lot, but I've reached a plateau and I believe I can be doing much better with a different medication. She suggested methotrexate, but I'm very reluctant to go on that because I need to be able to keep working full time, and I'm afraid with mtx I won't be able to. So I've been looking into CellCept, and it seems like something to consider, although the risk of lymphoma scares me. And isn't there a new generation form of CellCept that is easier to take? I think I read about it somewhere, but can't remember the name of it now. Any thoughts before I see the rheumy in a couple weeks? I want to go there with as much information as possible.

ssingh
03-21-2009, 02:53 PM
I am taking cellcept for 12 years 2000mg a day without organ involvement. what are ur symtoms?

Loverly83
03-21-2009, 03:54 PM
I've been on CellCept for a little over a year (2000mg/ day). I was on Imuran before that and Plaquenil before Imuran. I, unfortunately, haven't been helped much by the CellCept. Now I have kidney involvement, as well as some other major problems so I'm seeing a new rheumatologist because my old rheumy thought I should double my CellCept to 4000mg/ day and double my prednisone to 60mg/ day, and I just couldn't handle that!! The new rheumy thinks I should try Rituxan infusions.
BUT, I know someone else who has had really great results on CellCept, so just like the rest of the disease.... everyone is different. Good luck though.

ssingh
03-21-2009, 04:08 PM
Instead of Rituxan infusions try Cytxan IV infusions,,Rituxan infusions has too many issues... such as activating JV virus

Loverly83
03-21-2009, 04:11 PM
My lupus has gotten extremely severe, so I'm not going to do Cytoxan infusions, because that would make me inelgible for a Cytoxan Ablation, which is what my doctor said I may have to do if Rituxan doesn't work. The Cytoxan Ablation is done at Johns Hopkins, but you can't have it done if you have ever received Cytoxan in the past.

The ablation is really drastic, but in the last three years I've never not been in a flare, and now I have severe kidney involvement and heart problems from the lupus.

ssingh
03-21-2009, 04:20 PM
what is Cytoxan Ablation? what I meant was Cytoxan i.e. cyclophosmide(spelling). I had it done few times.

Loverly83
03-21-2009, 04:26 PM
A cytoxan ablation is the same drug as what you are referring to, but administered once in a very very high dosage. It is, like I said, a really drastic treatment. It makes most people sterile (sometimes permanently).

It more or less wipes out your entire immune system, and then your cells regenerate. It is only done by one doctor, but for people that have no response to traditional treatments for lupus it has worked.

Here is an article about it: http://www.wegenersgranulomatosis.net/IMMUNE%20SYSTEM%20ABLATION.html

Bonita
03-21-2009, 05:16 PM
Has anyone been prescribed CellCept for SLE, with no kidney involvement? My rheumy has only prescribed Plaquenil, and it's helped a lot, but I've reached a plateau and I believe I can be doing much better with a different medication. She suggested methotrexate, but I'm very reluctant to go on that because I need to be able to keep working full time, and I'm afraid with mtx I won't be able to. So I've been looking into CellCept, and it seems like something to consider, although the risk of lymphoma scares me. And isn't there a new generation form of CellCept that is easier to take? I think I read about it somewhere, but can't remember the name of it now. Any thoughts before I see the rheumy in a couple weeks? I want to go there with as much information as possible.









my doctor wants me to try methotrexate or cellcept but i had a bleeding ulcer once and i do not know if i can handle it and the side affects worry my. Bonita

brandichi
03-21-2009, 06:36 PM
Ssingh, that's really encouraging! My symptoms are extreme fatigue, joint and muscle pain, dryness (from Sjogren's), weakness, and all the other typical symptoms associated with auto-immune stuff (butterfly rash that NEVER goes away, brain fog, inability to handle cold, really bad GERD, etc). I have read that CellCept affects the stomach, and I've had ulcers before, so I'm really unsure about this. So far I don't have any permanent organ damage. They suspected it had gone after my heart in December when I was hospitalized for what felt like a heart attack. They thought it was pericarditis, but it turned out to be just the GERD. Whenever I get into a major flare, my liver is affected and often my lungs, and I go back on the nebulizer for a while, but with prednisone all eventually goes back to normal. So far, anyway.

Is Cytoxan one of the chemo drugs? The rheumy told me in December it was time to consider one of them, but I refused. She also said there are less options for me than most people because I also have asthma, even though it is well controlled, and many medications used for SLE can trigger asthma attacks. Arghhh!!!

Loverly, the Cytoxan Ablation does sound very drastic, but if it can bring you into remission, it sounds like it will be worth it. How long are you going to give the Rituxan to see if it works?

Loverly83
03-21-2009, 06:51 PM
I think we will probably give Rituxan around 6 months. From what I've been told most people see results pretty quick, but I don't want to jump into the ablation without trying everything else.

Brandichi, I've heard asthma complicates everything, and it really sounds like it! And you are right, for most people, CellCept really does effect your stomach.

ssingh
03-22-2009, 09:32 AM
you said "but you can't have it done if you have ever received Cytoxan in the past." but my doctor does not think so" According to my doctor Rituxan is much more dangerous.

Loverly83
03-22-2009, 02:24 PM
Rituxan and Cytoxan both have some major downfalls as far as side effects go, but the two rheumatologists I have seen prefer to use Rituxan before stepping it up to Cytoxan. In addition to their preference, I am not taking the Cytoxan Infusions, because I want to be able to do the Cytoxan ablation if I don't see results from the Rituxan. And if you have ever received Cytoxan you are unable to do the ablation.

I think a lot of doctors are weary of using Rituxan because it has not been approved for the treatment of Lupus, and there have been less studies done on it. My new rheumatologist's wife has lupus, and she has been in remission since using Rituxan.

But one of the main reasons for me personally is just to keep that option of Cytoxan ablation open.

I'm sure the danger of both drugs is different for different people based on symptoms and how their lupus presents.

ssingh, I see you are from San Jose... I have some family there! :)

ssingh
03-22-2009, 02:35 PM
Sure, i see what u mean. I had my cytoxan done in 2000 then Ritaxan was not available. Go with your doctor what ever he is saying and check ur inbox for PM. You said once you take cytoxan if u ever need it again it will not work???? huh . I did some googling on 'rituxan lupus".

Loverly83
03-22-2009, 04:30 PM
Sorry, I may not have been so clear. You can have multiple regular cytoxan infusions with no problem. It is only the ablation that requires that you have never had cytoxan before. The ablation is different than the regular infusion treatment. I replied to your PM. :)

ssingh
03-22-2009, 04:44 PM
thanks so very much.

mortifiedat52
04-04-2009, 06:06 AM
i was diagnosed only 3 weeks ago and my rheum put me on cellcept (2000 mg/day) and prednisone (5mg/day).. after about 2 weeks, i was somewhat improved.. but during this last week, not any better or any worse..

my symptoms are primarily hands, feet, jaws, and eyes... hands & feet are sore, swollen, and stiff all the time.. eyes are bloodshot (episcleritis) and i have reynaud's as well..but prior to diagnosis, i had pain in every joint in my body.. as far as i know, don't have any major organ involvement..

i haven't had any side effects from the cellcept at all..

i'm trying to be patient and give it time to work.. still passing for normal at work and keeping up the "fake it til you make it" attitude..

pooie95
06-30-2009, 12:55 PM
I've been on Cellcept for over a year with no major organ involvement. My Rx is written for 2000mg per day, but I will usually take 1000mg in the morning and 500mg in the evening. When I'm feeling well I'll just take the 1000mg in the morning and no evening dose. I also take hydochlorquine daily. I have noticed Cellcept does help me.

scubagramplit
07-08-2009, 06:05 PM
my rheumy started me on cell cept(generic) 21/2 weeks ago and start tapering off prednisone, have been on 40mg for about 21/2 months and has done wonders getting me over my last flare up, I gained a little wait but nothing I couldn't deal with, I am now on 38mg prednisone(20mg in am and 18 in pm, will be 17 in pm fri.) 1000mg cell cept twice daily. since I have been on the cell cept I feel like I am swelling up all over, I look like I am 6 months pregnant(being male & 46 yrs old I don't think this is possible:) lol, the muscles around my knees ache almost constantly, my back muscles ache, my spine pops and cracks all the time when I stretch(however the stretching does make me feel a bit better) my headaches are coming back, my consentration seems to be backsliding a bit, I don't have the energy I had before the cell cept & I do believe it has raised my blood preasure which is not good especially with me having a leaking aortic heart valve. wow, I read back over this and I sound pathetic. I am trying to just keep going, I am the sole bread winner in the family. Sometimes I think I am going nuts. Just lupy I guess. any body having any of these problems? What have or can be done to stop this bloating? I am ashamed of myself, I have always worked and at least been in decent shape, sorry for all the whining.

cellcept, prednisone, plaquinile, cymbalta, hydroclorot, amlodipine. single xtra strength tylenol as needed for headache.

mountaindreamer
07-08-2009, 08:28 PM
hi subagramplit,

just want to tell you i am so sorry that the medication combination is not working so great for you right now. I can't advise on the weight issue, i got a steroid injection in January, and i am just now starting to loose some of the swelling. I don't know how we are supposed to undo the damage. Sorry so much pressure is on your shoulders, hope you feel better very soon.

scubagramplit
07-09-2009, 05:39 PM
thanks for the concern, I guess I needed to vent, I am still fatigued and muscles soar however I don't seem quite as depressed about it today. I guess I get very concerned having started a new job and wanting to do well and now this starts and then with my wife, who has been my rock through this from the begining is 4 hours away until we can get her and my little girl moved down here. Oh well. how are you doing? I hope well, for all our family here at WHL. Thanks for letting me vent.