Dr. Changed brand of CyA

[IcyAngel23]

I just got the new brand in the mail today. I know that they don't recomend changing brands so I'm not sure if I'll have more side effects or not. I was taking gel caps and now they are capsules. So has anyone else changed brands? Not sure it really matters but I thought I read somewhere about that. Having a good day. Hope everyone else is too.

[Bozema]

Hi Kristin-

You might give the doc a call and make sure. Mine accidentally made a mistake on dosing on one of my prescriptions last month. Worth checking into.

-Laurie

[ICLori]

I would call too. Sandimmune is the other brand (I assume you are taking Neoral like us) and I don't think it comes in a capsule...? I could be wrong...? But I'm worried that they gave you the wrong drug.

Also, I have read that Sandimmune is not interchangeable with Neoral - they end up being at different doses in the body, you need a higher dose of Sandimmune to equal the dose of Neoral...

Please call the pharmacy and/or your doctor before taking these...

Blessings,
Lori

[IcyAngel23]

It's Neoral just a different company brand than I used before. I called my dr today to find he is on vacation til next week. So I've had more nausea and hot flashes today than I have in the past. My dr's office messed up my dose like two weeks ago so I was worried about it but I guess I'll find out eventually. Thanks for the advice. Take care

[Sheryle]

My Doctor is wanting to talk with physicians who are currently trying Cyclosporin as a medication for IC. If you can, please send me a private message to jphil10158@earthlink.net

Thanks,:smile tee

[IcyAngel23]

I sent you a PM with the inof. I'm not sure it will help your dr cause I'm the first and only patient he has on this. I brought the researcg to him so he only knows what I know.

[IcyAngel23]

Well I do notice that since the change I'm getting more nausea and twitching. I'm having a hard time falling asleep due to the muscle spasms and twitching. It is more annoying thna anything. So I"m doing well and hoping for a good week this week.Hope everyone is doing well and having good bladder days.

Kristin

[ICLori]

Hi, Sheryle, my doctor doesn't know anything either, I brought in the studies and he prescribed it for me - I am his first patient. So there is nothing my doc could tell your doc. Your best bet is to bring in the studies that are posted on this site in these threads and show them to your doctor.

I'm not getting any better on Cyclosporine-A. I have been in a horrible flare for the past couple of weeks, and I'm soooo tired of this.

Why don't I ever get better on anything? Why doesn't anything ever help me? Why do I just get worse and worse every year?

I really do think that bladder removal is the only thing left for me.

Blessings,
Lori

[Sheryle]

How many of you are on CyclosporinA? Can you please email me and let me know how long and your opinion of it? Thanks a million!:smile tee

[ICLori]

Turns out the bladder irritation I've been having the past week or two (two weeks I think) has been a genuine UTI. With a bottle of Cipro now in hand, and one in my belly, I am already getting much better (Cipro works very fast for me on UTI's)....

Blessings,
Lori

[louise]

Hi All,

I haven't posted for a while as I have had too many things on the go plus I have been feeling absolutely awful plus the pain, urgency and frequency have been significantly worse for the past month. I had an IV treatment for my osteoporosis a month ago and after making me feel sick and experiencing worse bone pain for a couple of weeks, now I can't get the bladder pain to calm down.

I submitted a urine sample to the lab and it showed a low grade infection so my gp put me on cipro 500 mg. twice a day for a week. It makes me feel terrible and very depressed plus if anything it has made the pain worse. I am feeling like I can't cope with this much longer - thirty plus years of worsening bone and bladder pain are gradually driving me crazy. I sent a fax to my uro with a copy to my gp saying that the pain is "intolerable" and I am feeling "desperate" about living with this excruciating pain on a day to day basis let alone the possibility of another twenty to thirty years. Anything that I try makes my bladder worse.

My uro and I have discussed about my doing a trial of the Cyclosporine but he was away on holiday for a month, then I had the IV treatment and then he was away for another week. So I am hoping with sending him the fax that I will hear from him this coming week.

All my family and friends tell me how well I cope. But as my husband says I have become a very good actress over these years at being able to hide my pain except when it is so bad I just have to crawl into bed and double over in the fetus position.

Also, I know I am scaring my husband and myself because I have been having very bad thoughts about not being able to cope much longer with this severe pain. And I have these two sweet little grandchildren who just turned one in the past few weeks and I really want to be around to see them grow. But at the same time, I think of how I can get relief from this excruciating pain.

Thirty plus years of pain are also taking its toll on hubby and me. We used to get a little "holiday" as we call them when he would visit his Mother who lived about five hours from us. But she passed away last Feb. so we haven't had a little break now for about seven months. I suggested to him that we both need some space from each other now as we have had so much going on in our lives this past year. We lost two parents, one aunt and three good friends in addition to my having major surgery and then my brother had a stroke so I was named the sole execuor of my Father's will who passed away last August. I feel as if I never had a chance to recuperate properly from the surgery. There was just so much stress going on this past year and I seriously feel as if I am ready to have a breakdown any day. So hubby is in a hotel for the weekend and I am at home trying to rest and watch some of "The Forsyte Saga" he gave me last Christmas. I really need something to take me away from my life.

Thank you to anyone who took the time to read my "novel". I appreciate that very much. And if anyone has any words of wisdom or solace I could do with a few of those as well.

SINCERE THANKS,

Louise

[Rose Fish]

Dear Louise - Hi I just read your novel and I feel for you. You need to be with your husband and try to do things that will get your mind off of the things that are bothering you. Perhaps the two of you can plan a trip together. I also think you may benefit from a pain specialist. Try and look at each day with bright colours, go for a walk. Just do some simple things and don't overdue it. Hopefully your doc will have returned and you may try cyclosporin. Good look and keep your head up!!!

Take care, Rose Fish

[IcyAngel23]

Louise-
Sorry to hear about your ordeal lately. I totally know what you're going thru and I feel for you. I would push the CyA with your dr. It has given me some relief and It has been a godsent. Take care sweetie.

Kristin

[ICLori]

Dear Louise, you have been through so much - and on top of it your bladder pain is really unbearable - I'm certain the CyA will help you. I thought at first it wasn't helping me, but turned out it was a UTI, not a flare. Now I am sooo much better, I can tell CyA is really helping me a LOT. So just go to your doctor as soon as he's home, and get started, and within a few more months (I know that sounds like an eternity) you should be feeling better.

Please hang in there just a little bit longer. You've been in pain so long already...just a few more months, you can do...I know you can....please, the light is at the end of the tunnel, you don't have much longer to wait until you are feeling much, much better...please just hang in there, get to your doctor and ask for the CyA, and better yet, ask for some pain meds between now and then so you can be comfortable right now. Ultram works well for me, but we are all different.

Blessings and hugs,
Lori

[IcyAngel23]

GOOD BLADDER DAY !!!!!!!!!!
I think the newer brand I'm on now seems to be working better than the other. So Yeah I love CYA TOO!!!!!!!

[Sheryle]

I wanted to say how much I appreciate those who responded to the CyA questions. You are a blessing. I have emailed all the information to my Doc and expect to hear from him sometime this week. One day soon Researchers will find a cure for this disease and we'll all be able to get some relief.

[IcyAngel23]

I just asked my dr and he said that it doesn't matter which bran you take even if you mix them. The only time it matters is for a transplant. So I have tow cases of two different brands at my house so I know have a 6 month supply. Just thought I'd post it cause I was always told not to mix. Not sure where I heard it from but for IC it doesn't matter. Which works out nicely.