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Cellcept
I've recently been diagnosed as PPMS and this drug has been prescribed to slow the progression.  Has anyone here any experience with this drug?  Any words of advice?  

Sharlene
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I have MS and have an injection of Avonex once a week.  I had a flare up in Oct. that affected my legs so my Dr. just prescribed Cellcept.  I filled the prescription yesterday and was scared to death after reading the literature on it.  What is PPMS?
I will be interested in seeing if anyone has used this medication too.
Sunnyb.
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PPMS stands for Primary Progressive MS which is what I was diagnosed with last Thursday.  

I haven't gotten my prescription yet so haven't read any of the literature.  What I've read online has made me a little nervous.  Also my doctor telling me I had to get both the regular AND H1N1 vaccines as well as the pneumonia vaccine before starting to take the Cellcept just adds to that.  

Sharlene
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Are you recently diagnosed?  Have you taken any medication before?  

Sunny
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572651 tn?1333939396
ladies,

if you are paying a copay for the cellcept, be sure to see their website for financial assistance.  They have a card you use at the pharmacy good for $100 a month on your copay.

http://www.cellceptforliving.com/

I tried to read more about cellcept but have run out of time for now.  Hopefully someone with experience will come along and help.

about those warnings - absolutely everything these days come with lengthy, scarey warnings.  If we assumed all the worst would happen to us, we would never take another pill again.  You have to weight the benefits versus the risks and make your decisions with all the information you can gather.

my best,
Lulu

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649926 tn?1297661380
Sharlene,

   Hi! Sorry about your dx and the fear of new medicines.

  The reason they want you to have your flu shots is cellcept suppress the immune system and therfore your ability to fight infection. It is a good idea for everyone with a chronic condition to have their shots so I wouldn't stress too much about him telling you to get them.
  
  I was on cellcept for quite a long time when my dx was Sjogren's Syndrome. I never had any problems while taking it.

  I also took plaquenil. I don't know if that might come up for you but that one gave me this awful gag reflex. I couldn't tolerate that one but everyone is different.

Good luck to you
Erin :)
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I am recently diagnosed, last Thursday.  This will be my first medication since diagnosis.  

Sharlene
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Thanks, Lulu, for the tip about the co-pay.  As of right now, I just have a $20 copay with all my medications.  Hopefully, that doesn't change.  As long as I'm employed, that should be okay.  Knock wood !  

Drug warnings really are a PITA!  I know they have to do it but they can be so scary.  

Sharlene

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Thanks for the good word on Cellcept.  I hope that I have no problems with it and that it does slow the progression of this disease down.  Have all the vaccines done.  Just waiting for the Cellcept to come in the mail and then I'll start.  

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147426 tn?1317269232
Since this med has come up twice now in the same week, I'll try to find out some stuff about it.

Sharlene - I missed telling you how sorry I am that you are now facing all this.  We're all in it for you.

Quix
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Thanks, Quix!  Any information on this drug would be deeply appreciated.  I just hope it slows things down a bit.  

I am so glad I found this group.  There is so much information here and people are so very kind and supportive.  

Sharlene
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562511 tn?1285907760
I had not heard of Cellcept before now so I looked it up the day you posted.  Now I cannot remember much except that I wanted to make sure that you understand you should not get LIVE vaccines as long as you are on this med.   I believe the H1N1 *LIVE* vaccine is given as a spray in the nose.  If you had the nasal vaccine, you might want to wait and get the okay from your doctor before taking the Cellcept.  I believe the live bugs hand around for a bit and they need to be cleared before starting.  

Sorry to hear of your diagnosis.  Welcome to this forum. I know that Quix will find some good info for you.  

As you know, Cellcept will suppress your immune system.  All persons with MS need to treat *ANY* infection promptly.  This is of the most importance, more so for you because your immune system will be suppressed with this med.  It is a very good idea to get the flu & pneumonia vaccines so you will be protected against those.  Most neurologists tell their MS patients to get immunized.  

People who have MS do not have suppressed immune systems, but any infection has the strong potential to bring on a relapse.

Keep an eye on yourself and ask those around you to remember this advice. It is sage advice to treat any possible infection promptly.  



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649926 tn?1297661380
Sharlene,

   Great advice from Karen. Sorry I didn't mention that Live Vaccines are a no no. They usually tell you that but it is very important so you can be told too much. NO NASAL SPRAYS FOR YOU!

  Keep us posted on how you respond to your new treatment.

  Good luck & well wishes

  Hugs,
  Erin :)
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Thank you both for your advice.  The doctor did not tell me about live vaccines but I did know about it beforehand so I got the shots (OW!)  My son also got vaccinated.  It was important for him, the nurse said, since he (a) works with the public and (b) he lives with me.  

I'm still waiting to receive the Cellcept from my mail order drug fulfillment vendor.  I just wish it would get here so I could start.  Patience is not one of my strongest virtues.  

Sharlene
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