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Generic Cellcept


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#1 barefut

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Posted 11 November 2009 - 05:56 PM

Maybe it's all in my head but since I have been switched to the generic Cellcept it seems all systems have not been go (with the exception of one...) :rolleyes:

I feel I've been in a continuous and worsening flare for the past several months. Has anyone else experienced anything similar with Mycophenolate vs. Cellcept? Or with any other medication and its generic for that matter?

Thanks,

#2 Shelley Ensz

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Posted 12 November 2009 - 04:03 AM

Hi Barefut,

I'm sorry you're in a flare and not doing well.

As it happens, as I understand it, generics are required by law to contain the same ingredients, effectiveness and safety profile as the brand name. Sometimes even the best medications quit working due to changes in our health or just their own ineffectiveness as time wears on.

Personally, I love generics because they are equivalents while also being money-savers at the same time, so I leap at opportunities to take them.

So please don't just lay this off on the medication or generic. Please see your doctor about your increasing symptoms. You might be experiencing side effects or something else might be thwacked. (Thwacked is a distinct medical term meaning "absolutely anything could be haywire, especially with scleroderma.")
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#3 janey

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Posted 12 November 2009 - 05:41 AM

Barefut,

It's interesting that you bring this up. I do agree with everything Shelley said, however, I am beginning to wonder. I was switched to generic cellcept around Feb 2009. Over the past 2 years while on cellcept my lung function had become stable. In June of this year my PFTs showed a significant decrease in FVC and DLCO (since December). We did it again in August and an insignificant drop was seen. I have another one scheduled for December so we'll see. If it has continued to drop, I was planning on bringing up the generic cellcept and see what the pulmonologist has to say. In the past couple of months I have had all sorts of tests run to see what could be causing this drop, but nothing really significant has raised its ugly head. So generic cellcept would the last straw for me to grasp.

I'm sorry you are feeling worse. What are your doctors saying? Any comments from them on generic cellcept? I did talk to a pharmacist friend and he said I shouldn't even notice a change. It's a mystery to me.
Janey Willis
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#4 barefut

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Posted 12 November 2009 - 12:03 PM

Thanks Ladies,

My next appointment is in just a couple of weeks and I was planning on bringing this up with her then.

Janey, February was my generic date too and my Sept. PFT's were down as well with regard to DLCO - not much but enough that they want to return to seeing me every 3 months instead of every 6.

It would seem that since the generics are supposed to have the same 'stuff' as the real deal then it should make no difference - but what if maybe the 'other stuff' generics use somehow inhibit absorption? Just grabbing straws too.......

#5 Sweet

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Posted 12 November 2009 - 02:59 PM

Hey Barefut,

I haven't had experience with that particular drug, but I did have an incident where a certain manufacturer with Plaquenil didn't work for me at all. I had been on Plaquenil for about 9 years, and due to insurance changes, my meds started coming via a well known mail order pharmacy. I've always taken the generic one, but I had NEVER heard of this particular manufacturer. Within 3 days I was a wreck. I had my doctor write another script and specify certain manufacturers that I had used over the years with success, and it did the trick. So strange. There are other drugs I've been on though where the generic had not worked as well as the name brand. Everyone is different, so you just have to listen to your body.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Jeannie McClelland

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Posted 12 November 2009 - 03:27 PM

Hi Barefut,

I agree with Shelley and my pharmacist daughter, but I also agree with Janey. My switch date was February, my September PFT's were down, I got diagnosed with autoimmune hypothyroidism, and the rotten neuropathy in my legs is much worse. So you've really got to wonder. I'm going to ask to be switched back since our insurance does give me that option.

Warm hugs,
Jeannie McClelland
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#7 Patty LaFave

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Posted 12 November 2009 - 05:09 PM

Barefut,

I'm sorry I have never taken your medicine, but I have had experiences with a few other medications where as I've been told the generic and the brand should be no different, but experienced quite significant differences in the brand vs the generic. At least with 2 different medications I've taken there had been a definite difference in my response to the med.

Patty

#8 barefut

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Posted 13 November 2009 - 05:22 AM

Thanks Sweet, Jeannie and Patty,

All my other meds are generics and work just fine. Funny how I waited SO long for a generic Cellcept to arrive due to the outrageous cost even after insurance (my insurance at that time required a 30% co-pay!) now I am leaning on switching back.

#9 Peggy

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Posted 13 November 2009 - 01:43 PM

I'm just glad that you brought this up as it's something for all of us on Cellcept to watch for. I too have been switched to the generic and in October my PFT was worse. I'm due for another PFT in January and I hope that it's not down again. Each time I go it's a little worse. Well if you keep adding up these little decreases they start to add up!! Thanks for the heads up. It's something we should all be watching as you just never know.

Hugs,
Peggy

#10 Cheryle

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Posted 16 November 2009 - 11:10 AM

As I understand it, generics must and do contain the same active ingredient as the brand name drug. What varies are the "fillers". Different fillers, and these can vary from one manufacturer to another, can alter the rate of how quickly (or slowly) the active ingredient is absorbed. Thus, this can cause a different effect than what you get from the brand name drug.

#11 barefut

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Posted 09 December 2009 - 07:09 PM

Okay so my inferior theory is blown out of the water as my PFT's went up this time. My DLCO went from 58% to 68%. Go figure! Good news though. I go back in 6 months and if there is not another drop then I can go to seeing my pulmonologist annually.

I did tell my rheumatologist about all of us who have experienced lower DLCO results since February this year with the generic Cellcept. Of course she did not confirm or deny that generic Cellcept could be inferior, she just said that there are a lot of people who report experiencing generics differently than the name brands and vice versa.

#12 Sweet

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Posted 10 December 2009 - 04:34 PM

Wow, good news Barefut! Glad to hear it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 janey

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Posted 17 December 2009 - 12:36 PM

Well Serena, looks like I'm going to join you in blowing the generic cellcept vs. pft results out of the water. I had a pft today and total lung capacity went from 52 to 67 and my DLCO went from 38 to 49! Significant improvements!!!! My doctor thinks it is probably due to being aware and more conscience of my Oropharyngeal dysphagia. Since diagnosed 5 months ago, I've been doing several great exercises that one of our wonderful members shared with me. I know they have helped with the swallowing, but based on the pft results, they probably have also helped with the possible aspiration. So, nothing can be proven as to what has caused such a significant increase, but that's o.k. I'll take it!!!!! I don't go back to the pulmonologist for 6 months! WhooHoo!
Janey Willis
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#14 Shelley Ensz

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Posted 17 December 2009 - 02:22 PM

Serena and Janey, I'm thrilled for you both. There's nothing finer than enjoying some improvements, is there?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#15 enjoytheride

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Posted 17 December 2009 - 10:11 PM

I have no personal experience along these lines- I just wanted to mention that I saw a piece on a news show about generics. The rule for FDA approval is that the active ingredient must be proven to achieve the same level in the blood as the brand name. But the news story pointed out there was no requirement as to time frame on achieving this level.

It then went on to explain that some generics take a longer time to achieve this same level especially on drugs that need a very small amount of ingredient to achieve their effect. It said that the switch in these cases needs to be made slowly although it did not specify how that was done.
Generally I don't believe most news stories but this seems to fit in with people experience. :bye: