Anyone Rx'd CellCept for the Lupus?

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Wattsnex
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Date Joined Nov 2006
Total Posts : 27
   Posted 7/9/2008 7:43 AM (GMT -7)   
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
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Date Joined Jan 2008
Total Posts : 102
   Posted 7/9/2008 7:59 AM (GMT -7)   
I will be starting cellcept next week. I have been on Imuran for about 6 months and it really hasnt help I dont have kidney problems either. let me know how your doing with it and side effects?

JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/9/2008 8:13 AM (GMT -7)   
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

jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/9/2008 8:20 AM (GMT -7)   
I have aps as well and I was having a hard time breathing so as a precaution went to er. No one knows what it is and really frustarting because when your having a hard time breathing its not the easiest thing to explain. Everything was ok . thank god I work in a doctors office so they kinda made me go. When you work in the medical field you play things down a little..
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/9/2008 8:21 AM (GMT -7)   
how expensive is it?
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/9/2008 9:41 AM (GMT -7)   
Im having shortness of breath right now as im sitting on the couch today taking it easy not really having much back pain not like last time I had pleurisy. It gets worse the more i do the worse it feels Im wondering if I should use a inhaler to see if thats helps. at all I looked up my health ins for the med
I take a asprin a day for the aps
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/9/2008 9:46 AM (GMT -7)   
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?

jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/9/2008 9:51 AM (GMT -7)   
I think im just in denial about whats really going on right now I jsut want to feel better Im not a good pt by any means. Im getting depressed I hate sitting around when there is other things I could be doing..
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 7/9/2008 6:26 PM (GMT -7)   
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.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:
Cellcept 250mg/ capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines, Magneseium supplement daily
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/9/2008 8:21 PM (GMT -7)   
Heidi55529,

Hi, thanks for replying. I do not have any kidney involvement, I have had Lupus diagnosed for the last 7 years along with Sjogren's. The CC is to improve the inflamation taking place. I cannot take Prednisone so the CC was my only alternative along with the 400/day Plaquenil which I started at the same time (1 1/2 mos ago), so I don't know which med to attribute any improvement in.

When you say you do not notice any difference, are you referring to any decrease in pain? What type of labs do they base any signs of improvement on.

I wondered whether taking the CellCept would affect the INR&PT values. I am watching any effects very closely, it seems though it is upsetting my stomach-repeating gas (even taken with food) since I have increased from 1000 to 2000/ day but just at that same time I noticed a mild decrease in my pain. I have been taking Advil 200 2-3x /day and was afraid of the side effects..

The APS caused a large problem with the circulation supply to my intestines and I had to have a 5 hr operation. Also had a Pulmonary Embolism and Pleurisy now.

What we don't go thru and looks like it is here to stay. I am 63 and thought I had some good years left.

Take care
Carol (Wattsnex can happen)

Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 7/9/2008 10:39 PM (GMT -7)   
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!
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/10/2008 5:45 AM (GMT -7)   
Hey Heidi,

This is the second am in a row that I have seen an improvement in my pain, had a good sleep last 2 nites after months of going thru it. My pleuritic pain still bothers me but not quite as sharp. Before, I could hardly lift myself up out of a chair(pain & weakness), or walk up/down steps because of my hip & knees bothering me. I wish I could do away with taking Advil, it does bother me to think of the long-term side effects.

That is something, how similar our situations are, except for the 38 yr diff in our ages. I was on the Iron (Ferrlicet ) for 5 IV treatments and had 4 to go (my CBC values were falling way below normal range) They had to put iron treatments on "hold" as I was getting terrific pains where I couldn't even raise either of my arms at all. They weren't sure if it was coming from the iron treatments. I will have to go back and finish the 4 up, but I am waiting to see Rheumy in August and will have blood test before that. I thought my anemia was due to the malabsorbtion due to the "ischemic" condition of my intestines (the 5 hr opeation-arterial bypass was suppose to correct that). The 3 main arteries supplying blood to my stomach, spleen, liver & intestines were totally blocked attributed to the APS condition, (thick blood/clotting factor persistant for so long before it was caught and treated). I had diarhea for 5 months straight and lost 52 #'s over the course of the year before anyone found the problem. I went to 5 diff GastroEnts's for the diarhea & loss weight and the falling CBC values and not one picked up on it. It's scarry to think how poor the quality/value of care is, I was close to having gangarene in the intestines. I also have Type II diabetes and that wasn't helping the circulation factor either. As far as the Advil, the Drs approve with the Coumadin treatments I am on, I wouldn't take anything without checking first, I have my INR/PT check at least every 3 wks now. I have 7 different specialists + a Vasc surgeon + a GP I must go to. Advil doesn't thin the blood like Aspirin does, for me anyway. A few years back on was on Vioxx quite regularly for inflamation/pain, before I knew of all this vascular involvement was going on with me and now I seriously wonder what that might have done to attribute to the problems I am having.

What does the Rituxan treatments do for you?

Do you find that being on the CellCept has made you more suseptible to infections? Before this I would never even get the sniffles.

Blessings.

Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 7/10/2008 2:56 PM (GMT -7)   
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?
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/10/2008 5:24 PM (GMT -7)   
Heidi,
My goodness, you are way too young to have gone thru and still be going through all you are, it just isn't fair. My prayers are with you. You are very strong.

I will inquire about the Rituxan with the Rheumy next month. I will see the Pulm. tomorrow. Tonight after supper I had a lot of pain but went all day without an Advil or a pain med, then stared coughing or choking and the whole diaphragm was in painful spasms, felt as if it was pushing up and crushing my lungs, I couldn't move because of the intese pain and I was struggling to catch my breath. I should have known better not to "brag" that I felt better these last 2 days.

You said you strongly reacted to Naproxin, was that before or after you were dx'd with Lupus. There is such a thing as "drug induced Lupus", it is 1 of the 3 types of Lupus.

They say in all my CTs of the lungs they see a couple of nodules very tiny, they don't change both sides, just stay there. They also said they didn't see any pleurisy, I don't know whether it has to be the wet pleurisy for them to see or to what degree but I am having an awful lot of pain, like an "elephant" is sitting on my chest, once it is the right side, then left and center, it's enough to "drive ya crazy". The Cardio checked my heart out last month and said it was fine. I will ask the Pulm. if it might be Sarcoidosis. I am so confused and rather scared. Was it your Rheumy who rx'd the rituxan?

Take Care
Carol

Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 7/10/2008 8:09 PM (GMT -7)   
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 was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/10/2008 11:30 PM (GMT -7)   
May you continue to have good results with the Rituxan, your Rheumy sounds very good and she is working with you.
I just must keep in mind not to panic when I get that way, it only makes things worse.
When you were anemic and having to take the iron shots, did you notice that your tongue on the top surface towards the front always felt burnt?. There, when my iron was being built up that feeling lessened but now that I am not taking the treatments and my Hct,etc, values are falling, that feeling is coming back. I had read somewhere that it can be a symptom of anemia.
I hope you continue feeling better. There is nothing more distracting to say the least when you have to work and feel bad. I had to give up a good job because I could not climb the 24 stairs each way and had to walk quite a ways from where I parked my car.
Blessings
Carol

Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 7/11/2008 12:13 PM (GMT -7)   
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.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/11/2008 1:54 PM (GMT -7)   
I just started going to my Rheumy,she came highly recommended.

I feel the way you do for personal reasons I don't want any blood transfusions, but I had asked several times of the Dr. and techs if the "Ferrlecit" had any blood in it and they said "no". Must look it up on the FDA website; I would be more than irritated to find out different. The pills make me constipated and weren't effective enough.

Just came from the Pulm.  So what is all this pain coming from? I ask....reply: Lupus and Sjogrens.... I haven't known or heard of anyone having this much pain for that amount of time, I said. He just shrugged his shoulders.  He only had to offer the Advil & the pain med.
take care

Post Edited (Wattsnex) : 7/14/2008 5:48:25 AM (GMT-6)

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