Anyone Rx'd CellCept for the Lupus?

I would like to hear from members taking or have taken CellCept.  How long have you used it, dosage qty and have you seen any changes in your condition?

I was just recently rx'd with a rather high dosage of 2000/day but do not have any kidney implications with my Lupus.

Please let me know what it was rx'd for

Thanxs

Carol

Wattsnex

Meds: Synthroid,Plaquenil, Coumadin, Diovan, CellCept, Aciphex, Multi Vitamin, VitaminD, Insulins, Evoxac at times, Advil at times

Post Edited (Wattsnex) : 7/14/2008 5:36:05 AM (GMT-6)

JessieRose

I have mixed feelings with the CellCept, I have been taking it now for 1+ month, dosage went from 1000mg/day to 2000/day the second month. I also have APS and Gerd and must take Coumadin for blood thinning; I have had a Pulmonary Embolism prior to therapy so I take that as a warning and follow the Coumadin med faithfully and have my PT checked often.
Once you have started the CellCept, please let me know how you find it. I had inquired of the Rheumy about Methotextrate before Rx'g the CellCept and she advise that the CellCept would have less side effects to it, which is for me as I am a "stickler" on that. But it is rather expensive.

Take care
Carol

how expensive is it?

You should consult with your Doctor regarding the use of the Inhaler.
I do not use an inhaler nor have ever been rx'd one. Would you have asthma?

I've been on Cellcept for the past year and a half. I'm currently on 2000mg a day and I honestly don't notice to much of a difference. But my labs have been somewhat stable, so I'm taking that as a good sign. At one point though, I was on 2500mg a day for about three months and that made my hair thin like crazy. So we reduced it back to 2000mg, and it's growing back now. I would just watch very carefully and pay attention to how your body reacts to it.

I'm on Coumadin as well, and adjusting the dosage of Cellcept didn't really effect my INR too much.

Anyhow.. Cellcept is the most expensive medication I'm on. I get 800 capsules each time I do refills and the retail price is $2593.03 which comes out to about $3.24 per capsule. However, my copay for it is $105. Which isn't too bad compared to almost $2600. But being on so many other medications as well, it starts to add up rather quickly.

Hey Carol,

I do not have kidney involvement either, although for the past few months my kidneys have been spilling protein on and off. My doctor said that's a sign of the Lupus still being active. I was diagnosed 2.5 years ago, and also had a pulmonary embolism which was when I found out I had APS as well.

For about a year, I was going up and down a lot. In regards to the lab results and how I was feeling. When I started the Cellcept, there wasn't much improvement since I was still flaring on and off which is probably why I said I didn't notice such a big difference. My doctor slowly increased the dosages too. I started off with 500mg a day for about a month, then to 1000mg the following month, to 1500mg, to 2000mg, and so forth. Like I said, the only difference I really noticed what when I went up to 2500mg my hair started falling out.

It wasn't until I started started my rituxan/chemotherapy treatments that I really started noticing a difference. Before that I wasn't able to taper the prednisone. And even though it doesn't seem like much, it was the only way I got down from 10mg of pred to 6mg now. I think that was when I finally found a combination of medications and treatments that actually worked for me.

Anyhow, the tech says that it does effect the INR and so you would have to watch it closely. I think because I increased at a slower rate, it didn't really change my dosage of coumadin to much But I still get everything checked out when I'm supposed to and stay on top of things.

As for the lab results, here's the list of tests they run every month:
protein/creatine urine, urinalysis, creatine/serum/with glomerular filtration rate, total hemolytic complement, c3 complement, c4 complement, dna antibody, INR, CBC, white blood differential, dna antibody titer.

What the tests actually mean I'm not exactly sure. But my health insurance allows me to check the results online as well as compare past tests results. It tells me what the normal range is, and what my numbers are. So I can see when I'm flaring, the numbers go crazy. And when I'm doing better, the numbers just look better and get closer to the normal range.

And I totally know what you mean. I got diagnosed right after my 21st birthday, and I'm only 23 now going on 24 in October. It's going to be a long road ahead of me.

Also, I just thought of something. Are you sure you're able to take Advil along with coumadin? Isn't Advil similar to Ibuprofen and has naproxen in it right? It's one of those medications that you should avoid. Or at least that's what I was told.
http://www.drugs.com/coumadin.html
I would ask your pharmacist about it the next time you take your INR.

I see Tylenol listed on there too. I'm also on Midrin for migraines and the active ingredient in that is acetaminophen. So I got my okay from my doctor and pharmacist for it.

I'm just scared of the advil/ibuprofen/naproxen because I had a really bad reaction to it and it gave me ulcers and I was severely anemic because of it. And had to have an endoscopy and be in iron supplements for a few months before my counts returned to normal.

But yeah, sorry for going on a tangent. Best of luck!

For the most part, for the past year I've been pretty stable. I had severe chest pains back in July 07 and couldn't breathe and was rushed to the ER. I stayed a few days, but they couldn't tell me what was the cause of it. It subsided though.

But I haven't really had anything serious happen except when I was first diagnosed. That month was just crazy because I didn't really get sick and up until that point I was pretty healthy. But within 3-4 weeks, I went down hill. I did originally see my doctor for swelling and joint pain in my hands but he brushed it off and prescribed naproxen. Which was what made me severely anemic because I had the reaction to it and it wasn't found out until later on. I swelled up so much and was in so much pain I could barely walk. I found myself in the ER three times and stayed almost a month. That's when I found out I had Lupus the first time. Went home for a day, then right back to the ER and I found out I had myocarditis and my resting heart rate was like at 168. I couldn't breath and every little move would make my heart feel like it was getting stabbed. Got to go home again, only to return 2 days later with chest pains again, only to find out I had the pulmonary embolism with the clots in my left lung. Then was started on lovenox and coumadin for that.

Since then it was up and down for at least a year and half if not more. I would have months were I would do really well and my labs would look up. I would feel better, and we'd try tapering and I'd just bounce right back in a flare. Had really bad days where some of my joints were so swollen I didn't want to get out of bed. I was tired all the time. My hair would fall out, and continued to thin. I had bouts of rashes all over my face. And it was just really rough for a while because I would think I was seeing improvement, and it would be like taking one step forward two steps back. I wasn't really going anywhere.

So thats when my doctor suggested the rituxan. I really think its been my miracle drug and whats worked for me. I've had it for the last two years and had 8 treatments so far. Granted, it does make you feel really icky for a few days. But I do see improvement in the labs and I do feel better after I get it. So it has it's long term effects that are good. My last treatments, I actually got it early because I was having several incidents of chest pains and my doctor said it can bump it ahead. Since then I haven't had any major issues.

Tapering prednisone still has been tricky, but I honestly don't think I could have with out the rituxan. And the joint pains and swelling has subsided quite a bit. I'm having more good mornings then bad lately. And I think that's all attributed to the chemo. So I'm glad that my doctor suggested it.

As to being more susceptible to infections. I think it's actually been the opposite for me. I used to get a cold or flu once a year or so during the flu seasons. However I haven't lately since I've been diagnosed. I'm not sure what it is, maybe it's all the other medications I'm on. Who knows?

Oh no, I hope you start to feel better soon. Chest pains and not being able to breath are the worst feeling ever I swear. I'm keeping my fingers crossed and sending prayers your way as well.

In hindsight, knowing what I know now about the disease I do not think it was drug induced. I had symptoms well before I was prescribed the naproxen. And I think the naproxen had made it worst, but do not think it was a cause.

Looking back now, there were some symptoms that were left unnoticed and I had just brushed off to the side. I'm still not sure what was the trigger that caused me to go into such a flare. But whatever it is, I do think it's always been there lurking.

And yes, it was my rheumy that prescribed the rituxan. We weren't seeing much improvement at all in any of my labs, so she wanted to see how it would work with me. She has several other patients on it as well and it's worked for them. So we decided to give it a try and see how well I responded. Turns out, that it works for me.

I do have a really good relationship with my Rheumy. She's been there for me since the start and we've had monthly follow ups for about a year and a half. Now I see her once every three, but I still have the monthly lab testings. She's always been very thorough and we have good communication. I can always email her or leave a message at her office, and she gets back to me within a day or so.

When I was anemic, I opted not to do the blood transfusion for personal reasons. And they just put me on iron tablets instead until my labs returned back to the normal range. I think I was on them about two months or so. I didn't notice anything strange with my tongue though when I was on them. Although they did warn me about constipation. But I think I was on so many new drugs and still adjusting that my stomach was a mess anyways, so it wasn't really an issue either. They did prescribe stool softeners as a precaution.