I love Cyclosporine-A!!!!

[ICLori]

:smile tee

Woo hoo! I thought this med was working several weeks ago - had some really good days, actually had a really good week or two, then I got another flare and I thought - oh, man, this med will never work for me. Well, turns out that 2-3 week long flare was a stupid UTI!!! Man I am going to have to go back to ordering the d-mannose stuff or SOMETHING to keep these stupid UTI's away!

Anyway, now that the UTI is under control with the Cipro, my bladder feels very very close to normal! I still have a bit of frequency at night, but I'll bet that will get better and better with each month on the CyA. The reports/studies made it seem like, the longer you are on this, the better it works, especially up to the first year mark, so I have high hopes! Even now, my IC feels like it's under control (if I can just keep the UTI's away, that is.)

I love CyA! Hurrah, Neoral!

Just wanted to share the good news!

Blessings,
Lori

[BeachBaby]

YAY LORI!!!!

About time to report great news, huh? Very happy and encouraged for you!:smile tee

[KarenIC]

Hi Lori,

That's great news!!! I'm so happy for you!


Take care,
Karen

[ICLori]

Thanks, Betsie and Karen! I really was sooo worried that the CyA wasn't working - boy was I glad to find out I just had a dumb UTI again, LOL!

Blessings,
Lori

[louise]

Lori, You Mentioned About Having A Problem With Utis. Starting This Past April I Was In The Same Boat. I Find If You Take A Very Good Acidophillus On A Regular Basis To Keep The Natural Bacteria In Our Intestines In Good Order That Can Help To Keep The Utis At
Bay. But If You Are Not Already Doing This, Make Sure You Get A Good Strong One With Millions Or Billions Of Bacteria In It And Follow The Instructions As To How Many To Take. And Especially After You Have A Uti It Is A Good Idea To Take An Even Stronger Dose Of The Acidophillus To Get Things Back To Normal In Your Intestines. About Four Years Ago, I Was Trying Antibiotics Long Term To See If That Would Help With The Ic - All It Did Was Give Me A Terrible Dose Of C.difficile Which Landed Me In Hospital For Ten Days. So Now That I Have Just Finished A Week Of Cipro Myself,
I Plan To Up My Dose Of The Acidophillus To Make Sure All Is Well Again With My Natural Bacteria.

Hi Kristin, I Wanted To Thank You For Your Post Also. You Have Been There For Me For The Past Year Or More And I Really Appreciate Your Support, Help And Understanding. We Each In Our Own Way Have Gone Through A Lot This Past Year And Supporting Each Other Has Been Very Important And Meaningful To Me. So Thanks So Much For Being There For Me. Whenever I Can Get My Uro To Start Me On The Cya, I Will Be Needing Lots Of Help And Advice From You And The Rest Who Are On The Drug.

Sincere Thanks,

Louise

[Bianchi]

I am so glad it works for you. Do you get the cyclosporine by prescription?
Bianchi

[vm]

Awesome!!! :) :) :)

[ICLori]

Hi, Bianchi, yes, it's by prescription only. In fact you have to be monitored very carefully (especially kidneys and blood pressure) while you are on it, and many doctors will not prescribe this for IC at all, and none of the doctors would ever prescribe it unless: 1) You have tried and failed every other standard reasonable treatment for IC and 2) you have symptoms that are so severe they are absolutely preventing you from having any quality of life whatsoever.

This should be the last remedy anyone tries, and even then, it should be tried with extreme caution and only under the supervision of a very competent doctor.

I am truly not sure which remedy is more risky - taking CyA or having your bladder removed - they are both truly "last ditch efforts" to give a person with severe, untreatable IC their lives back. Both options are very serious options only to be considered when nothing else has worked and when the IC is very very severe.

Louise, I'm keeping you in my prayers and I sure hope and pray this will help you, and that you'll be on your healing journey soon. You've suffered so much, and I know you feel you can't take much more, but please hang in there a bit longer, things will be okay. Please hold on, one of these days it will be you posting that you feel like a brand new, healthy person again.

Thank you so much for the good advice, I actually have some probiotic capsules in the fridge and I went and took a couple today. I will have to remember to take them regularly from now on!

Blessings,
Lori

[Angeles]

IC Lori I hope you don't get another UTI!
There are a few things we can do to prevent them and I wish I knew about before. (I just read a book about it!)
I also take D mannose.
It is very important to clean VERY WELL after each BM. If you can take a shower better or bottle wash very well. It may be worthy to keep the bugs away!

[IcyAngel23]

Awesome Lori. Sounds great. I"m close to gettin there myself. YOu've been on it longer so it makes sense you'd start to see better results. This may be the breakthrough the IC community has been waiting for. YEAH !!!!! Congrats on the good bladder days to come. Take care.

Kristin

[Bozema]

Hi Lori and Kristen-

I'm glad to hear you're doing better. I think finally I'm getting there too. Things have settled down a lot with working at home 3 days a week and I'm feeling much better. I think I just need to go very slow at getting back to my regular routine. I even worked an extra long day yesterday but was Ok at the end of it. I'm home today. I may keep a reduced work schedule until I'm out of pain for several months just to be sure. Rushing back in is what i think nuked me this time.

So maybe we'll go 3 for 3 on cyclosporine after all. Hooray!!!!

-Laurie

[ICLori]

Hi, SMR, I probably should do that washing up thing...it's just such a hassle is all :(

Kristin and Laurie, thanks so much you guys! I am sooo happy too that you guys are also having some good days these days. I hope that for all of us, things keep getting better and better!

I feel as if I'm very nearly there. I can drink lemonade now and orange and grape sodas (used to be no-no's) and not feel irritation. But at night, I still have - not irritation anymore, but frequency I guess. It doesn't take very much urine to trigger a need to void for me. And so I'm still depending on the Ultram here and there to get a good night's sleep. On the nights I go without, I just don't have as good a sleep. When I take Ultram (which is now feeling too strong compared to my symptoms to take, I'll have to maybe use 1/2 on the nights I take it) I generally sleep 6-8 hours before waking up and needing to void. Without it, I'm voiding about every 1 1/2 hours which for me is too much. :(

Hoping for better and better days for all of us, and I'm sure keeping my fingers crossed for Louise and others who might try CyA, who have suffered so much - I hope that they get the medicine soon and that it starts working soon too.

Blessings,
Lori

[sweetangel2080]

glad its working for you lori and that your flare wasn't a flare at all!
hope it continues to help and starts helping at night too

[ICLori]

Thank you so much! Actually it is helping even at night, but there is just enough irritation or really frequency I would say, that I find I sleep better with the Ultram. But I have reason to hope that the longer I am on CyA, the better I will get, so I'm keeping my fingers crossed!

I'm so happy, too, that my two friends on board who are also trying CyA, are getting better and better, too!

Blessings,
Lori

[ICLori]

Well, I still can't eat certain no-no foods. Just ate a hot dog and got a flare. :(

When, oh when, will I get full remission?

And I still feel like I'm much more tired than usual - I think that is a side effect of the CyA.

Am I EVER going to go into full remission? Wish I knew...maybe I need to increase the dose from 3.0 to 5.0.....will talk to my doc about this next week....wish me luck...

How is everyone else doing on CyA? Anyone in full remission yet? Seems like none of us are, quite yet...

Just feeling really down. I want to be THROUGH with this disease. I want it to go away!

Blessings,
Lori

[SharonA]

Hang in there, Lori. You will get there. You are one determined, head strong lady. Next time, if there is a next time, check for the UTI first.

:) :) :) :) :) :) :)

[ICLori]

Thank you, Sharon. I just keep thinking...is this as good as it gets? It's not good enough...

Blessings,
Lori

[IcyAngel23]

When we start to feel better no amount of relief seems enough. All you want is more and more of that feeling. I understand. I'm still in the battling stage with some relief but I would love it to be more. I know I have to give it time and remember we are not alone.We are trying this out for ourselves and others like us. We knew going into it,it was going to take awhile so hang in there. I'm trying to as well. This is the most relief I"ve gotten from any treatment so I have to wonder with Lori to if this is the best it will get. I'm sure other drs wouldn've given up on me but mine has stuck by me through second.third and fourth opinions. I've seen the best but ny uro in my eyes is the best.