Cytotec as a cocktail ingredient

[Baba Yaga]

Unfortunately, theis may be a question best suited for Lori, who did so much research on cytotec. But maybe others can chime in with their thoughts.

I have taken neither elmiron nor cytotec yet! (except for two elmiron instillations)

Other than the question of which one is or isn't helping (for those new to both drugs), is there any reason not to take both at the same time. Could they work in tandem or is there reason to thing they would interfere with each other?

I have wondered in the past about the idea of elmiron pills combined with heparin instillations, the possible future use of cytotec itself in instillations, should cytotec become popular for IC, and the question I posed above, among others.

Do you have any thoughts?

[marsi4]

I think it's a great idea, it will go directly where it needs to go. I'm in the process of learning how to self cath and when I do I will be instilling certain meds that I think may be effective with my doctor's consent.

Marsi4

[Baba Yaga]

I don't envision cytotec instillation for years, even if it IS someday deemed a medically appropriate option. But it sems like it could be a possibility.

I am very curious, for the immediate future, about taking both drugs orally at once, perhaps as an option for people who can't tolerate meds easily in the standard quantities....? A little o' this, a little o' that... just wondering about it...

[ICLori]

Not sure if an instillation would work or not...interesting idea though! Actually the cytotec is often inserted vaginally to prompt or enhance labor, I've heard. (I've heard it causes harm sometimes when it's used that way, too - some horror stories out there.)

As far as I know it's okay to take Elmiron and Cytotec together - it's not listed as one of the drugs to avoid or anything (you know how each drug always has a list of stuff to avoid.) Pharmacists usually have the best answers for this - I've bugged lots of pharmacists over the years, LOL! They are always really patient answering questions and they have so much knowledge about what drugs are safe or not safe to take with other drugs, etc.

In fact I was wondering myself if Cytotec and Elmiron together might not work better than if they are taken separately. As far as I know there aren't any studies on that though. But I was thinking of how they did a study on Atarax and Elmiron and how both of those used together worked for a higher percentage of patients than either one by themselves.

That's an interesting question!

Blessings,
Lori

[Baba Yaga]

Hi Lori!

Thank you for your input!

I do know that there are some things that as a practice are not mixed together in instillations, and I'm not sure on why regarding that either.

(Like why not offer a double whammy of heparin and elmiron together? Why are some things never mixed with DMSO? So maybe eliron with certain things would just become a glue, or brittle or something, or perhaps interfere with the prostaglandin action effected by the cytotec...?)

I am personally becoming hopeful that oral elmiron may help me, because the two elmiron instillations I had seem possibly to have helped. But I don't like the idea of waiting so long to be sure, or of risking the hair loss, or of the nausea and stomach problems people have had to deal with or else go throught he hassle of breaking pills open two or three times a day...

[maryla]

Hi Lori, I have read alot of your posts about cytotec and how it has helped you. Wow! Could you tell me where you got your info on the drug and what other meds you are taking?

I too am at the end of my rope, so to speak. I moved some of my meds around and was getting more sleep that way and was feeling great for a couple weeks. Then at the begining of March I started hurting really bad again, and was dianoised with a uti. I took 7 days of antibiotic however, I still have lots of pain and I feel soooooooooo drained I am not sleeping because of having to get up a million times a night, it seems.

I have tried many things and drugs as well. I go back to my uro Mon. and I am going to ask to be put on cytotec but I want to take in some info & research to him that supports the healing affects. I too have considered having my bladder removed.

Also, would you please explain to me what a protaglandin pump is?

Thank you very much and I hope you re feeling better with your bladder infection!

God Bless all of you for your help

[ICLori]

Hi, Mary, believe it or not, I live in Dayton, Ohio, too! Hey neighbor!

Actually I heard about Cytotec from these boards a couple of years ago. A guy called Norm came here and said it made his wife go into remission, and then people began posting studies about it and talking about it. I looked at the study and it seemed promising so I started looking for doctors to prescribe it for me. It took me awhile (5 doctors) before I found one to say "yes" to me because I'm still of child-bearing age. Cytotec is generally not prescribed to any woman who can become pregnant because it is not safe to become pregnant while on Cytotec. So if you are planning a family or do not want to use absolutely fail-safe birth control, this medicine is not for you. If you have already gone through menopause or have a hysterectomy, then this medicine might be safe for you to try.

Here is the study on Cytotec that I printed out to take to the doctors:

One study conducted in Belfast (UK) studied it with IC patients. Here's the abstract.

Clinical Response to an Oral Prostaglandin Analogue in Patients with Interstitial Cystitis
J.D. Kelly, M.R.A. Young, S.R. Johnston, P.F. Keane
Department of Urology, Belfast City Hospital, Belfast, Northern Ireland
European Urology 1998;34:53-56 (DOI: 10.1159/000019679)

Objective: To assess the efficacy of the oral prostaglandin analogue misoprostol in controlling the symptoms of interstitial cystitis in patients with refractory disease.

Methods: Twenty-five patients were commenced on misoprostol 600 µg daily for 3 months. Patients who responded to therapy were offered treatment for a further 6 months. Assessment of the response was by a voiding log and an interstitial cystitis symptom score.

Results: At 3 months, 14 patients (56%) had significantly improved, and after a further 6 months, 12 patients (48%) had a sustained response. The incidence of adverse drug effects was 64%. Most side effects were minimal, and the response rate in patients who were able to tolerate the drug was 87% at 3 months and 75% at 9 months.

Conclusions: The oral prostaglandin analogue misoprostol is effective in treating the symptoms of interstitial cystitis. It is possible that prostaglandins have a cytoprotective action in the urinary bladder.


Hope this helps some.

BTW, I'm still having bladder symptoms, ever since my UTI. I'm not doing so great, and don't have any idea if the Cytotec will fix things for me or not. My next step is to try Cyclosporine-A (if you do a search of these boards, you will see tons of studies and posts about that medicine too, it's showing great promise in treating cases of IC that have failed every other treatment.)

To do a board search for posts about cyclosporine-A or Cytotec, just go up to the blue bar at the top of the message boards, and click on the word "search" and type in whatever term you would like. You'll get tons of information about both treatments and one of them or both of them might be treatments you and your doctor are interested in trying.

I am seeing more and more interest on the boards regarding Cyclosporine-A. Some are coming and posting that their uros are recommending they try it.

Blessings,
Lori

[maryla]

thank you Lori! My uro is in Cincinnati. Thank God I found him. Did I read earlier that Atarax actually makes the bladder worse according to the theory of Norman Smith? I can take the cytotec, I have had a hysterectomy! Thank God! I actually live North of Dayton about 30 miles. Do you know of an IC support group in Dayton? Thanks again!

[blondie45]

I am still holdiing out hope for you that you will get better after the UTI. I know I had one a few years ago, and eventually I did get better, though it did take a while. I did finally get an answer from my doctor who is letting me try the Cytotec. Only taking 1/2 of the 200 mg tablet at this point, as that is how he wanted me to start it. So far it has helped my IBS constipation but because I just recently had a UTI also I am thinking that the Cytotec may take a while to help because of that. So, again, thanks for telling us about the Cytotec and I am keeping my fingers crossed.

[Annie2]

Hi Mary and Lori! Just sent you a PM, Mary. I've been following the Cytotec threads with great interest. Sending a HUGE thank you to you, Lori, for your outstanding contributions! I am planning on discussing it with my gastro & uro, but, considering my ulcerative colitis, may not be able to try it. Worth asking the question,though. For my situation, cyclosporin might be better. I am just so thrilled to see these options being discussed!

Lori, sending lots of wishes that, as your bladder heals from the UTI, you will regain your complete remission! Mary, hope your uro will be receptive to your giving it a try and that it will bring you complete relief!

Still no support group that I know of in the Dayton area. Some time ago, several of us from the Dayton area talked about arranging a get-together, but it never happened. Now that spring is trying to arrive, how about we give it another try? I'll start a new thread suggesting it on the Central Region Board and see what kind of response we get....so, if interested, please respond, K?

[maryla]

Thank you Annie,

Yes, lets get together and form a group. My uro cannot believe the closet one is in Cincinnati, he keeps suggesting I attend, However, 1-2 trips a week is plenty. I don't drive out of my city anymore. Anyway, glad to hear from you!

God Bless

[maryla]

Oh, Annie, You look so familiar

[ICLori]

Hi, Maryla, sounds like Cytotec might be worth trying in your case, I hope you have good luck with it! I also don't know of any support groups here (I actually live in Beavercreek) but I'm new here (just moved last summer) so there might be one I don't know about.

Hi, Blondie45, I'm keeping my fingers crossed for you, it's good that you are starting a low dose because hopefully that will keep the gastro symptoms more manageable. Yeah, those UTI's are horrid, and my doctor recently told me that even with a normal bladder (non-IC bladder) it takes at least 3-4 weeks to heal from a UTI. So I'm guessing it takes about a month before everything settles down. As an experiment I dabbed dimethicone cream (anti-chafing stuff) on my urethral opening last night - it really helped! (I'm always doing nutty stuff like that.) So something is going on more with my urethra, rather than with my bladder. Sometimes I wonder if I have some infection of the Skene's glands in addition to the IC - that would explain a lot...

Hi, Annie, good to "see" you, you look so pretty! :) You have such a warm smile!
I hope you are feeling better lately!

Blessings,
Lori

[Baba Yaga]

:bump:

!!!

[littlemyrn]

After reading this tread, did you see my thread regarding my new instill compound. It is Elimiron, 100, Cytotec 200, lidocain 2%. I instill at least once a day, I try for twice a day, but have had a few unwanted side effects that make it difficult, such as shakes, and fever, on a lose dose anti, and it is helping. I am able to have watered down coke now and even had pizza with little sauce with no ill effects. My doctor is kind of doing her own study. A doctor spoke about it in Cleveland a few weeks ago.

[Baba Yaga]

I bumped it inresponse to your thread!

Has it been about a week?

How is the pain and urg/freq doing?

What do you think those sude effects are from?

Is there anything else in there, like dmso for absorbtion?