I just found out, Cytotec stops working on some people!

[ICLori]

Hi, guys, you know how the Cytotec worked so well for me, then it stopped working? Well, I talked with a doctor today who told me that he sees this happen often, with gastro patients who are taking Cytotec - it works for awhile, then the body gets used to the medicine and it stops working. He said it keeps working in some people, but stops working in others.

I told him I was thinking maybe I was insane, because I didn't understand how it could work at first then stop working. And he said, no, it's really quite common for this to happen, unfortunately.

Anyway, wanted to let everyone know what I found out.

Blessings,
Lori

[purpleviolet]

I thought I was sort of stable, but just got a bad flare so cytotec and vesicare haven't helped and when my prescript is done (few more weeks) I'm going to stop. I'm thinking of St. Johns wort. I would also like to be placed in a hypaberic (sp) oxygen chamber. but I bet no uro will go out on the limb for me to do that.
Hope the cyclsporine-a helps you Lori. PV

[malone]

I, too talked to my doc about it stopping relief and he said he would up the dosage before giving up or let it get out of your system and try again. I would try anything!!Malone

[ICLori]

Malone, I don't think it will stop working for you - I think it only stops for a minority of people, but a large enough minority that it's not unheard of at all. And your doctor's advice sounds good, too. Maybe that's what I should have done, stopped taking it for awhile and then try again - but I'm still hoping for something that will give me relief 100% of the time...

Blessings,
Lori

[louise]

Hi,

I Started The Cytotec Just Over A Week Ago And Increasingly Every Day The Urethra And Bladder Pain Got Worse And Worse So Today I Am Stopping It And Checking To See If I Have A Uti.
On Rxlist.com, Under The Urinary Section, They Say You Can Develop Passing More Urine Which I Have Been Doing, Urethral Pain And Urinary Tract Infection. I Had So Hoped The Cytotec Was Going To Work Like It Has For Some Of You. I Think It Is Time To Give Up Because Any Time I Try Something New It Just Makes Me Worse And Then It Takes So Long To Settle Down. Very Discouraged And Frustrated!!!

Gggrrrrrr,

Louise

[lm2]

That's discouraging. How common is "quite common"? Did it stop working for you entirely? I remember you had a bladder infection and then still had pain at night, but I thought before that you had symptoms 24/7. Or did it stop working entirely?

[ICLori]

Hi, IM2, it stopped working for me entirely, completely. To the point where I went off it and decided to try Cyclosporine-A instead. And the doc I talked to about this, who used Cytotec for gastro patients, said he saw that with some of his gastro patients - that for some of them, when the body got used to Cytotec, it stopped working completely. No benefit at all. Because for some reason, in some people, the body "rebelled" so to speak and went back to baseline in spite of the med.

I don't know how many people exactly this happens to, only that it's not unheard of and is in fact fairly common.

If it works for you, however, keep using it - if it's going to stop working for you, it would stop working within a few months. If you've been taking it already several months and it's working, it will probably keep on working, nothing to worry about.

Blessings,
Lori

[akrose]

the cytotec never really worked for me, i went off of it 1 month ago.

[ICLori]

I'm sorry to hear that... :( I hope so much that you will find something soon that will give you complete remission!

Blessings,
Lori
P.S. I'm doing really well lately on the Cyclosporine-A (Neoral) - I'm glad my doc let me try it!

[louise]

Hi Lori,

I Read Where You Are Taking The Above Drug After Trying Cytotec.
I Had To Stop Taking Cytotec Because Of The Side Effects. My Uro Has Mentioned To Me About The Cyclosporine-a But Feels He Would Like To Work With A Rheumatologist At The Same Time So I Am Hopeful Some Arrangements Can Be Made In The Near Future.

Would You Mind Sharing Some Of Your Experience On This Drug.
Do You Find The Side Effects To Be Very Bad. Have You Had Relief With It From Your Pain? Thanks For Any Info Or Advice You Are Willing To Share With Us.

Sincere Thanks,

Louise

[ICLori]

Hi, Louise, several of us trying Cyclosporine-A have started threads in the "Other Treatments" section of the board. Click on that, and you will see two active threads on Cyclosporine-A where three of us are posting about our experiences. IcyAngel23 has asked Donna to consider making a separate space on the boards for Cyclosporine-A, and I think she and Jill are discussing it.

It's very smart of your doctor to want to work with a rheumatologist on this, I hope that if you do try it, the side effects will not be bad and that it will help you a great deal.

I'm sorry that you had bad side effects from the Cytotec.

Blessings,
Lori