I started taking the Generic of Cellcept in May and when I visited my nephralogist in June and let her know, she was not pleased at all. She now wants me to take an additional blood work-up that will have to be reviewed at the Mayo Clinic in Minneapolis, which may not be covered by insurance. When I asked her the possible side effects of taking the Generic she told me I could face brain damage and ultimate loss of the kidney over a 5 year time period and there is no way for my regular blood work to reveal any problems (thus the Mayo Clinic blood work). I was not impressed by this discussion and let her know that: "Yes, there may be patients who will have problems with the Generic, but I may be one who has no ill effects whatsoever." What is important to remember about the medical community (doctors in particular): They are PRACTISING medicine. My co-pay for the Generic was $10 compared to $125.

You never know what the motivation of a doctor is, no offense. Often they truly want to protect their patients! Sometimes, they want to sell drugs. Only you and your doctor can ferret all that out.

I think what is also important to keep in mind is that generics don't have to go through all the rigors of clinical studies, etc. They only have to have a facsimile of the original drug, not the exact formulation. So I agree that a generic, and it's possible side effects, should prompt your doctors to follow you very closely with blood tests. There must be other labs, other than the Mayo one, that can do blood tests though!

I just had a generic birth control pill spike my BP up to the 220's just sitting. Once I went off of it, normal BP. And it did permanent electrical damage to my heart. Now I can't do the simplest thing like bringing in groceries without having really bad PVC's (the dangerous ones). Drugs aren't candy and every single one of them, whether the original version or a generic, should not be taken lightly. Just my opinion.

And I know that cost is a factor. But what is the long-term cost of a bad generic?

Dottie, Are you still not doing well or are you better?

Annie

FF & Annie
So sorry you have to go through all this stuff thinking you were doing the right thing with the generic versions ! Thank you both for the insight on, there can be a difference between the two . I will be asking questions about generic equivalent now, on any new drugs I am given, for sure!
Thank you again, for all the info,

Well, Annie, thanks for asking, but I'm worse than ever...saw a neurosurgeon last wk, but he was no help, just confused the issues...something else is going on, both my arms are painful & weak, possibly from compression at the elbows & he wants another EMG....his claim was I don't have Mg cuz I can flex my fingers to the thumb repeatedly..guess we don't need that repetitive EMG that's scientific...he's got it all figured out...blah,blah,blah....he also suggested I consult at a university hospital since he can't spend the necessary time at a neurosciences clinic....
After that visit, I am really discouraged, & this a.m. was worse, can't even put on a shirt, my hands & arms hurt so badly...have to now take Percocet that at least dulls the pain a little..& the big ? is where in the world could I go for help???? Sorry for the rant...it's so discouraging....

Dottie

Oh, Dottie, I am so sorry. I can completely empathize with that discouraging feeling. Those clinical tests are NOT scientific! You need the actual tests, like a Single Fiber EMG. This guy sounds like he can't be bothered.

Well, you deserve good health care. Can you please do a new post and see if anyone knows a GOOD neuro in your area? I don't know anyone in TN. The closest docs I know are at St. Louis, MO (Washington University). Dr. Harms, to be specific. Yes, Harms! But I've heard he's really good.

Please don't be discouraged. I know it's hard not to be diagnosed completely. Have you tried talking to your primary doctor about all this?

Hang in there. Someone out there WILL help you.

Annie

Has someone looked at your spine? Like your c-spine? What if you have a pinched nerve?

Hi ,
I just read about your arm symptoms and wondered if you have heard of Thoracic outlet syndrome {TOS for short}?

Often mis dx'd as carpal tunnel, or elbow entrapment.
Here's a link to our TOS forum useful sticky thread-
post #1 is a crash course of links
http://neurotalk.psychcentral.com/thread84.html

Hi Dottie,

so sorry you are in such a bad place at the moment. It must be soooo hard for you especially with all your animals, especially horses to look after.
I went out to my sister's place on the weekend and just for fun after my nieces had riden my dear old horse, got on to have my photo taken. I couldn't get off the regular way, and had to lift my leg (with my hands)over the front of the saddle to dismount!!!! I really to sympathise with you.
I hope you get some answers soon,
take care
Kate

Hey Dottie,

I am so sorry for all you are going through. I hope you get some answers soon and get the help you need. Hang in there and I'll be keeping you in my thoughts & prayers.

Big Hugs,
Pat

2 things:

First off: I am so sorry to hear you are going through so much right now! It is sooooo frustrating and scary! Know that you are in my thoughts and prayers!

Second: I am on generic cellcept and love it! I have bloodwork done weekly (per my onc/hema and neuro) and so far, so good!

I may be the exception to the rule, but so far generic cellcept has been great!

Erin