View Full Version : New meds..Prednisone, Metho, Cellcept and/or Imuran...??

04-14-2011, 07:16 AM
Ok so since the birth of my daughter when I obtained my first remission, I have begun to show signs and symptoms physically and through blood work of active disease again. I have been on the Plaquenil the whole time(about 2 yrs or more)and it is not working. After I see my rheumy this summer sometime she is prob going to start prednisone. I have been on it a few days in the past and it worked for my symptoms but after I finished the prescrip everything came back. She had said if it helps with flaring but I continue to flare when coming off the prednisone then she will put me on a maintenance dose and add either Methotrexate, Cellcept or Imuran.

I am just wondering about everyone's experience with these meds(side effects..how well it worked..etc) and particularly in regards to the "chemo's"...did anyone lose their hair? I already have thin hair and lose some due to lupus..not in clumps but it is thinner...

Thanks all. Hope you are well! -Lupie Britt aka Miss LadyBug

04-14-2011, 07:22 AM
This is a great topic. I would like to know the answer as well (except to the loss of hair question. I do know some people do lose it). I have been on plaquenil and predisone for over 2 years (along with tons of other meds). They have been upping my prednisone but for several months but nothing is working. I am thinking Imuran or Metho is going to be next so I too would love to hear which of these have worked best for the people here

04-14-2011, 10:00 AM
I can't answer your question, but im going to ask my new dr about methotrexate. I've heard from others on this site that it really has helped them, and im ready for relief. Im looking forward to seeing what everyone has to say too.

04-15-2011, 08:47 PM
I am currently on plaquenil 400mg a day, cellcept 1000mg twice a day, prednisone 20mg a day, methotrexate I take once a week o.6ml by injection, which I give myself and curently was prescribed Benlysta. Waiting to see if insurance will cover it. The cost is 31,000 just for the medication and with office visits for infusion the total is 51,000 dollars! The plaquenil by itself use to work for me but the last 2 years my flare ups are more frequent and on going. Even with all this medication I continue to flare and have new symptoms. Yes you will have hair loss and thinning, I have insomnia due to the prednisone so I take a sleeping pill and sometimes even that doesnt work which then calls for me to take all together Lyrica (which I take 3x per day), dilaudid, restoril, and flexeril to knock me out(whooooohooooo). I dont recommend for u to do this bit a girls gotta do what a girls gotta do. Abdominal pain is also an issue so take something for that, Emotionally I can get very moody and angry so I feel like im all over the place (dont like that feeling), You will have weight gain due to the Pred. If your rheumy places you on all that im on you will need to be placed on an antibiotic since your immune system will be so depressed which will make you succeptable to infection,I take bactrim 3x per week.
The fatigue also sucks , so get ready for that. I have a high tolerance so what should work for most dont effect me, my last hspt. stay the nurse didnt want to give me the sleeping pill because i had visitors and it would knock me out reasured her that it wouldnt happen. She came in 40 minutes later expecting for me to be asleep and even my rheumy was shocked that the dosage i was taking wasnt working. Which ever med you take, remember each medication works differently on esch individual. Good luck and feej better. Slim

04-17-2011, 08:43 AM
Ihave been on plaquinel since November 2009. I asked to stop the prednezone do to bad effects last year. The plaquinel hadn't been doing it's job the last few months last year. In February I started with the methotrexate. It's working with no real side effects. I feel very little pain and am for the most part healthy as can be. I'm now sleeping better also. I'm trying to get my life back in some semblance of order.