Cyclosporin anyone?

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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 1/25/2008 5:58 PM (GMT -6)   
I have only been sick with Lupus for 5 months and here we go. I am nervous. I know many of you by the list of your medication arsenal that you have been there done that. Anyone want to give a first timer some comfort? Here is the deal..I have met a few women with the bonemarrow disease that is a prelude to cancer. I know Barb here has it as does another women I met in HW chat. Can anyone fill me in on the chances of developing such a condition ? Anyone here specifically on the drug I am going to start? What to expect?
I feel odd these days emotionally. I "feel" healthy. I feel like myself with a body that just has pain. I dont feel like a sick person. It is hard for me to believe I am at a point where so many drugs are necessary. Denial? How can it be denial when everytime I wake I feel like I am 100 years old. I feel like my body has betrayed me. Lied to me if you will. I am not and nor have I ever been a drug abuser, alcoholic, smoker whatever..... I choose everyday to smile and comfort everyone around me. I choose not to let this darn thing kick me in the ass. I also wish I had the choice to make body conform.

Post Edited (Chaya) : 1/25/2008 5:46:52 PM (GMT-7)

Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 1/25/2008 5:59 PM (GMT -6)   
Where the heck did that down thumb come from?

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/25/2008 6:42 PM (GMT -6)   
Hi Chaya,
I don't have any experience with Cyclosporin, but I'm pretty sure others here do.  I hope they drop you a line.
Whether it's chemo or any other drug we have to take, it is hard to wrap your head around what you're putting into your body.  I had trouble in the beginning too.  I have a lot of anxiety when I have to add a new medication to my regime.  Your feelings are valid Chaya.  It's scary and frustrating.  I also feel like my body has betrayed me.  Chronic illness = great loss.  It's okay to feel what you are feeling.  Grieving is important.  I don't think we allow ourselves that grieving time, do we?  We're smacked upside the head with everything we now have to do, take, not do, not take, adjust our schedules, change our lifestyles - who has time to grieve?!  And we're supposed to limit stress!!!  PLEASE!!  Give me a break.  I have more stress NOW, then I did during the 10 years leading up to my diagnosis.  Does this ring a bell for you too? 
I am allowing more peace into my life. My faith helps me with that.  We all need to figure out what it is that gives us that peace of mind, body, soul.  Sometimes it takes a while, sometimes it comes quick. 
So, I'm rambling now.  I'll stop.  Sorry.  I hope someone can help you with your question about the bone marrow.  Just please know you're not alone in how you are feeling.  There's a whole forum here who recognizes what it is you're going through.  We're here for you,
Oh, the "thumb' is an icon that you can change, at the top of the screen when you're writing a posting.  There are a bunch you can choose from.  Yours was set to the "thumb"!

I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/25/2008 6:47 PM (GMT -6)   
Hi Chaya:

The medicine I took was cytoxan or cyclophosphamide not the medication you're doctors are giving you. I didn't take the medication that been recommended for you. I know several ppl who try the type of med that you're using and it helped them a lot. All of the meds can have potential serious side effects. I can say the cytoxan is a very toxic drug so much so that they've choose to remove the oral form from pharmacys. The IV form of cytoxan is still in use. As for the drug you're going to take discuss with your doctor the particulars as to what the odds are at developing a lymphoma or leukemia. Mine is a freak case and I took both the oral and IV form of the cyclophosphamide.

I hope that you do well and that you'll begin to feel better very quick. If you have any questions I'll be happy to try to help you out.

Good luck,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 1/27/2008 5:48 PM (GMT -6)   
hey chaya,
i too have not taken the drug that you are talking about. i like barb took cytoxan and its actually a chemo drug so it is a toxic drug, and i also took it in the IV form and oral form but each time especially the last time i took in '03 i had to come off it (oral form) because it seriously lowering my white blood cell count and the risks were outweighing the benefits. you should talk to your doc and also do some research of your own to find out more about the drug. good luck
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

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