cellcept users

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AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/17/2009 12:07 PM (GMT -7)   
has anyone had bad things happen from cellcept use?? like side effects? infections? hair loss?? im so nervous im supposed to start this today and im terrified..she said it could cause cancer if it whipes out my rbc's whichi m hoping is rare..



any insight...
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 11/17/2009 12:49 PM (GMT -7)   
I was on Cellcept for about 18 months and for me it was my "miracle drug" that made my lupus symptoms turn tail and run...I've felt quite well since then.

After a few months my hair started to thin, but not to the extreme - ie my scalp didn't show thru. A few months after stopping the hair started to thicken up again...that was over a year ago and it's almost back to normal now.

I never heard or read the cancer thing - I would guess that depends on the dosage and your current health status. It may mean that your labs need to be done often - mine were about every 6 wks during that time.

Hope that helps a little,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/17/2009 12:59 PM (GMT -7)   
well fortuantly for me im small and she is starting me off on 250 mg twice a day to eventually have me up to 500mg twice a day..i guess what im worried about is she told me about red cell aplasia and PML.. some pretty bad virus once activated.. im ok with taking it but at what risk am i taking it..cellcept im hoping will cause my system to settle down..whereas with class 3 and 5 lupus nephritis without it i will alway sbe on steroids and i already have avascular necrosis so i guess im out of options and really have no choice but to take this full well knowing the risks.. im nor concerned about side effects i just dont want to get those severe things ya know
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/17/2009 1:44 PM (GMT -7)   
Hey Amy! Cellcept...not the drug for me. I had a ruff time with stomach problems and I had a lot of the side effects listed in the pamplet. But I was also taking 1000mg twice a day. When I was dropped down to 500 mg 2x's a day I could tolerate it. I have been told that it is becoming the new standard for lupus nephritis and most people show remarkalbe improvement...in a lot of cases are showing better improvement than with Cytoxan. And it should also help keep steroids at a lose dow. I was on it from Jan-August and it didnt control my lupus so they moved me to Cytoxan. From the majority of the people I have talked to, they have no side effects or might have had a few stomach issues for the first week or two while taking it. Oh yeah, I had my blood worked checked every two weeks for 3 months and then once a month until i stopped. I agree with Lynnwood, I have never heard of it causing cancer. Let us know how you do on it :)!

How did your appt go today? Did you find out if your kidneys are doing any better?

Jk2389
Regular Member


Date Joined Apr 2006
Total Posts : 115
   Posted 11/17/2009 2:36 PM (GMT -7)   
aimsgirl

When I was taking cellcept the only side effects I ever had was my hair getting a little thin around my hair line. It may look like you are loosing a lot of hair when you wash your hair but trust me you won't go bald. The cellcept was pretty agreeable to me it just might take some time for you to adjust to it. Once you get your dose figured out you will feel a hundred percent better.

jk2389
Diagnosed on 4/17/06
 
MEDS: ,
LISINOPRIL (blood pressure)20MG, 
CELLCEPT (chemo)1000MG,
PREDNISONE 7.5!MG,
OMEPRAZODE (stomach)20MG, HYDROXYCHLOROQUINE (lupus med)200MG,
Zocor 10 mg
 
 
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 11/17/2009 3:46 PM (GMT -7)   
Ditto to jk2389.

The cellcept has been a miracle drug for me. Right now I am taking 500 mg twice a day. At first I had what appeared to be an allergic reaction, but after restarting at a lower dose, I have been great. To be honest, I was actually doing better on 1000 mg twice a day, but insurance stopped covering it, so I am taking less to save some money (it is very expensive).
BTW, I had a severe reaction to Imuran (almost killed me), so I am truly grateful for the cellcept!

Good luck!!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/17/2009 5:53 PM (GMT -7)   
I loved cellcept and the way it made me feel. I experienced no negative side-effects except that my kidneys didn't like it & my labs proved that. It's important to have labs done on a regular basis if you're taking cellcept.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 11/17/2009 6:20 PM (GMT -7)   
 I am currently taking cellcept. I havent had much side effects except for mild stomach upset. All my labs have been good but I am on 1500 mg twice a day. I have been having a hard time with frequent flares and I get pericarditis and pleurisy a lot. I am hopeing that I can get down to a low dose of prednisone. Am currently tapering down from 20mg. Have made it to 12.5mg so far. I have tried methotrexate, 6MP, imuran and now this. So far I think this is working the best for me. Hope things go well for you also. Oh and I havent had any hair loss either.

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/17/2009 6:37 PM (GMT -7)   
well this makes me feel so much better..i guess i got freaked out by red cell aplasia and PML... but i guess thats with any immune suppresant... thanks so much ladies....you always make me feel better
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 11/18/2009 1:34 AM (GMT -7)   
I am also on cellcept for a total of 2 year, and it works miracle on me.  I don't have any side effects from this drug, and I am taking 1000mg twice a day.  It controls my lupus pretty well that the Rhumty is able to tappering down my pred.

DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 7mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; pregablin 75 mg

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