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allydams

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 #1 
Hi,

I am 24 years old and just diagnosed with Lupus SLE last week and completely lost and confused. Its nice to have a label for all the weird things my body has been doing but its still very scary.

My Rhem told me to choose between Benlysta and Cellcept and I don't even know how to decide or what to do. Im leaning towards Cellcept because Ive read more semi positive reviews about it. 

I am so scared of not being able to get pregnant so would either of these affect that?

Any feedback you guys can give me will help. I have no idea and open to all the help I can get.

Cakelady

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 #2 
Hi and welcome.

There should be a section on the main lupus site regarding pregnancy. For me I would neve try benlysta. Also before you start any treatment do a lot of research. I did not and I am now paying the price. I was around your age when I was dx'd and it was when I was pregnant.


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redpaki

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 #3 
I'm not a doctor but my doc gave me a choice of Cellcept or Imuran, I believe that Benlysta is a different type of drug whereas Cellcept and Imuran are similar.  I chose Imuran because it's older and in my mind that means more people have used it so there is more data.    But do some research so you can make an informed decision.

My pregnancy problems were the first clues that I had Lupus (although I wasn't diagnosed for almost 20 years after - my OB/Gyn tested me at least a half dozen times because she really thought that was the problem).  Also, some of my problems were probably due to antiphospholipid (APS) but that also wasn't diagnosed for 20 years.  Anyway, 2 pregnancies and 2 healthy babies (both were 6 weeks early but healthy).  I don't know if you can stay on the meds during pregnancy, but it is certainly possible to have a healthy baby if you have lupus.
Carolina

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 #4 
I agree with others in that you need to do your research on the meds. Each person with lupus is unique in symptomology , responses to meds, lifestyle, so many factors in deciding on which medicine to try. I took cellcept for several months but had various side effects which forced me to stop. I started benlysta infusions last fall, and after three infusions - 2 weeks apart- stopped, again because of side effects. Cellcept has been used longer and is in pill form, and wasn't costly (for me). Benlysta infusions were $6300 per infusion. (My insurance covered that, but many patients don't have such good insurance.) I am now taking arava and am tolerating it fairly well. I am lucky in that my rheumy sent me to Mayo last year and I had a very good experience. My blood work is a basis for medical treatment. And, because I am still in treatment for breast cancer,there are some meds I have to avoid.

So, relax, do some research. Don't jump into any treatment until you are comfortable proceeding. With your youth, you do have to consider your life choices-- pregnancy, etc. when choosing medication. I wish you the best of luck!

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Carolina
allydams

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 #5 
Thank you for all of the replies I really appreciate the support!
Mr. Bun

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 #6 
Hey Allydams,

You have a whole lot of things going on ........it's hard to digest all at once.  

There is a phone number you can call,  1-800-558-0121, which is listed at the first page of this LFA site.  Hopefully, someone will answer and give you information that will help you to feel confident in making your decisions regarding your therapies.

Lupus is nasty enough.....you got a double whammy going on.......and so young.  I'm an old Bun.....it saddens me when some so young are faced with struggles......just starting out their lives.

Let us know how you make out,

Take care
allydams

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 #7 
Thank you! I'm now so confused. I saw another doctor yesterday and he basically diagnosed me with both lupus and psoriatic arthritis. He's never seen a case like this before in his life. He couldn't really give me a straight answer. He said I was a very unusual case. He suggested to take mexotrexate instead of the other two.

I don't understand how I'm this unsual case. It makes no sense. I personally think it's lupus. Everything fits. But I know it's so hard to diagnose
Carolina

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 #8 
I think you'll find that those of us with lupus have various diagnoses including types of arthritis, fibromyalgia, etc. Unfortunately, having lupus is not like having a cold you get over. There are so many factors that all of us have. In addition to systemic lupus, I have cutaneous lupus, osteoarthritis, rheumatoid arthritis, sjrogren's, and fibromyalgia, just to mention several. I think you'll find your symptoms cross many conditions.

Take Mr. Bun's advice. Use all the resources around you. Methotrexate is used with arthritis and lupus and is often given in combination with other drugs. Good luck!

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Carolina
Rescueanimals

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 #9 
Hi Allydams,

Welcome and I'm sorry you have the diagnosis. I was diagnosed when I was 11 and was lucky to get into Mayo Clinic right away and get confirmation. I'm now in CA and have drs at USC. 
Everyone is right that we get several other diseases along with Lupus. I have SLE, Cutaneous Lupus, Lupus Nephritis, Depression, Essential Tremors. If you can get a second opinion if you're not sure about the psoriatic arthritis also ask about Discoid Lupus. Also, try to get copies of all your bloodwork and other tests done so that when you see a new doctor you can show them everything that's already been done. I have everything on a thumb drive and have put all my bloodwork into an Excel spreadsheet so that drs and me can see the history of my levels. Plus, why give 13 vials of blood each time if you don't have to?
My history on the 3 drugs: I am allergic to Methotrexate due to the fact that I'm on Inderal and had a really bad reaction to it. However, my mother was on it and it helped her with her RA.
I've been on CellCept before and I'm on it again. It helps with the kidneys and my face. The first week I'm dizzy and nauseous, after that I'm fine and have no side effects.
I've been on Benlysta for 8 months now. I know Cakelady doesn't like it, but I read the whole trial report and the difference in deaths b/w trial and placebo patients was minimal. Plus you have to realize that if you die for any reason, even a car accident, while in the trial, they have to report it in their findings. Benlysta is definitely different then the other two drugs as it is working to actually change your T-cells. Benlysta has a great website and their own 800 number to call with people to help. I'm sure the other two have information online as well.
Lots of women with Lupus have healthy pregnancies. Just work on your Lupus first and try to get some control b/c there are drugs you can't be on and CellCept may be one of them. Plaquenil definitely is. The Lupus Foundation of America has a lot of great information. Make sure your diagnoses are being made by specialists, ie Rheumatologists specializing in Lupus and Arthritis, Dermatologist if you have facial or body rash too. Same when you decide to get pregnant.
But everyone is right you have to do a lot of research and be proactive when it comes to your doctors. Good luck! 
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