newly diagnosed - what should I start with?

[Goodnightmoon]

Hello everybody!!

I have just recently been diagnosed with IC (hydrodistension and biopsy) and I am still very confused what to do and what not to do. Guess most of you know that feeling...

Since I seem to be in an early stage (just some flank pain and some severe bladder pain during my periode) my doctor started with only putting me on Enablex. However, I stopped it because I had such a bad stomach pain. My frequence is "okay" even without - about 8 to 12 times a day, can live with that.

However, I red in some books, that the earlier you start to treat your IC the more promissing the results. So I wonder if I should get started on Elmiron to help the bladder coating or what is left of it.

On the other hand, since the symptoms are not too bad yet, I thought that maybe some OTC like Cysto Q or Cystoprotek might do.

Does anybody have some experience with taking Cysto Q or Cystoprotek (or both) ALONE in the early stage of IC??

I am so glad I found this forum!!!
It just feels so good not to be alone with this problem!

[Briza]

Hi:hi:
Welcome to the board. I am sorry for your dx but please know that there are MANY successful treatment options to try alone or in combo.
In addition: DIET DIET DIET and other self-help stuff (reducing physcial and emotional stress, giving your body time to rest and heal and recover, drinking lots of water, massage therapy, self-relaxaton techniques, cold packs and/or heating pad, etc) are of utmost importance for most of us in controlling our symptoms and staying ahead of the game!

Please take a look at the patient handbook and diet info in the links in my signature below. The info provided in those links is very helpful on treatment options available and how the diet works AND helps!

Nope you are not alone...we have all been where you are at some point... but there are many here to provide support, advice, experiences.:) This is a very active board with a lot of regular members who post frequently so it is rare that a post ever goes unanswered. So ask and there will be suggestions and answers, I assure you!

Take care...and rest assured that you do have every reason to have high hopes that your symptoms will be under control soon with the support of this board and a good dr(s)...:)

[Mrs. Peel]

Hi, there! Looks like we're IC sisters.

In my humble (yeah, right) opinion, before going nuts with medications, I think it might be better to work on food/activity stuff. The goal being to stop irritating your bladder so it has a chance to improve.

Please don't get offended when I list obvious suggestions. I just have no idea how much you've learned so far. Here we go.

Stay off regular bicycles and avoid other activities that will jostle your abdomen. No heavy lifting for a while. Don't strain on the toilet if you can help it. No tight clothing from the waist down for a while. Don't let your pets step on your tummy (mine learned pretty quick). Speed-walk, don't run.

The IC Diet is a huge factor. It took me a week or so to wean off a few favorites. The best thing to do is eat and drink things only in the "usually safe" column. After your bladder heals up some, you can do the elimination diet, adding foods slowly to find out which you can tolerate. Lots of posts in the IC diet section of this forum. Be patient with yourself. The diet includes a LOT of information and it takes a while to learn.

I have similar symptoms to yours. Mostly flank pain, like a kidney stone, minor frequency and rarely, urgency. I was diagnosed about a month ago.

Hoping you see some improvement soon!

[Goodnightmoon]

Thanks to both of you!

Already follow the diet (at least try :-)) and with the help of prelief I am doing pretty well - just no more carbonated drinks ever!!!

Karin,
I saw you are taking Elmiron already even though your symptoms seem to be rather mild like mine, right? Did your doc recommend to start with Elmiron nevertheless? How about CystoProtek, which is supposed to do the same thing but maybe less agressiv for the stomach?? I would love to start something OTC before I go for the "hard stuff" :-)) but have no idea whether this is the right thing to do....

[SharonA]

:welcome: to the IC Network...:)

I am glad you are already doing the diet. It can be very helpful for controlling symptoms.

As far as meds are concerned...I am afraid the only way to find out if something will be helpful to you is to try them for yourself. I know it can be expensive, but go ahead and order the CystoProtek and see if you get relief with it. You probably already know this, but you can order it in the ICN Shop. You can find the link at the top of this page. There are people who have received a lot of relief with it. I hope you are one of those, also.

:):):):):)

[Mrs. Peel]

It sounds like you're on the right track, Moon.

I'm actually thinking about switching urologists because the one who diagnosed me (the first uro I went to, thank goodness), is really old school and is very firm that Elmiron is the only officially approved drug specifically for IC. Who knows? Maybe he gets a reward from the drug company for every IC scalp he bags. Just kidding.

As I was saying, I'm thinking about finding someone else who would rather treat it with something less extreme once I get some strength back.

[Margerle]

I am also a recent IC'er and am also, like you, in the very first stages of it. (Out of 5, my urologist said I was a 2.)

According to the hydro she did, I apparently still have a nice big bladder at 5 cups (which is good as there is limited scarring). My frequency is about the same as yours, and the pain is similar as well.

I have removed carbonated beverages and that has decreased a great number of my symptoms... I'm slowly but surely getting rid of the rest of the no no's :)

As for course of treatment, I did choose the Elmiron by instills. I do them myself without any trouble. For me in my situation, it seemed the best route to go considering the huge cost of Elmiron, the effectiveness of the drug when taken orally, and the stage of IC that I have.

I do the instills once every 5-7 days right now, and I will continue for another 3-4 weeks. I have just started seeing some changes in my pain/discomfort/tenderness in my abdomen and am grateful that I no longer hold my breath when my husband hits bumps in the road or potholes.:woohoo: though it is still quite uncomfortable.

So in total I've had 5 or 6 instills in the last 3-4 weeks and would consider them a wonderful treatment option that is very effective (so far :)). It would seem that to be on oral Elmiron for a stage 2 IC diagnosis (mild to moderate) is overkill considering the ineffectiveness of the drug orally as compared to the instills and especially considering the cost! :dizzy:

My next goal is to get some of my baby weight off and I assume with that major change, I will continue to see improvement.

I also have undiagnosed proteinuria. My nephrologist wanted to get this portion of my pain/discomfort symptoms sorted out prior to the exploration of that... So in the next month I'll see the nephrologist again and see what course of action to take there too.

Anyhoo, I've not been around very long, but that's my experience so far... hope it helps a bit!
:welcome:

[bluetou]

HI there, and welcome!

I was diagnosed with IC one year ago this month....my doctor first off prescribed elmiron (I never did fill the prescription....) .... I was never on any type of medication, and I did not feel right popping pills to try to solve this problem....so I decided to first off follow the IC diet, and I started to eat more raw and organic. I also follow the candida diet.

I eat no carbs, or refined sugars, or caffiene, or chocolate..etc...

I went to my naturalpath, and she placed me on UNDA drops (I was on these for three months), totally made a difference in my peeing every 12 minutes. I now can go every 1.5 hours, and sometimes even up to 2 to 2.5 hours! wow!

I also took a natural approach to my healing adding some natural foods with antiinflammatory properties and took some supplements to also kick off my bladder healing.

BUT to date I have weaned off most of my natural supplements (I was taking quercetin, glucosimine, msm, rutin...etc)

NOW I am only taking calcium and magnesium and omega 3's (when I remember), and flaxseed oil in my salad.

THAT is it! I have been very quiet about whispering that I am pain free (cause I do not want to break this cycle of feeling well!!) :)

I know not everyone chooses to go the natural route, but it has worked for me.

Peace
Blue
:pray:

Thanks to both of you!

Already follow the diet (at least try :-)) and with the help of prelief I am doing pretty well - just no more carbonated drinks ever!!!

Karin,
I saw you are taking Elmiron already even though your symptoms seem to be rather mild like mine, right? Did your doc recommend to start with Elmiron nevertheless? How about CystoProtek, which is supposed to do the same thing but maybe less agressiv for the stomach?? I would love to start something OTC before I go for the "hard stuff" :-)) but have no idea whether this is the right thing to do....

[ICNDonna]

One thing to remember is that Elmiron can take six months or longer to become effective, but it helps some ICers to live a completely normal life. I personally had a headache side effect, but given the same circumstances would try it again.

I hope the diet will help so you feel better soon.

Donna

[jimmydickens]

It sounds like you're on the right track, Moon.

I'm actually thinking about switching urologists because the one who diagnosed me (the first uro I went to, thank goodness), is really old school and is very firm that Elmiron is the only officially approved drug specifically for IC. Who knows? Maybe he gets a reward from the drug company for every IC scalp he bags. Just kidding.

As I was saying, I'm thinking about finding someone else who would rather treat it with something less extreme once I get some strength back.

I'm new and posted this same message on another tread...I'll post it again (if that is alright) I'm new, just reading, I've got most of these problems. I've NEVER even heard of IC until I had it. I'm using Elmiron 3 Xs a day for two months now & DMSO treatments (about 7 so far) nothing seems to help as of yet. I ordered a book I saw here this morning. I guess I don't need to tell about my new painful life (everyone here has the same thing going on) I'm 55 and just started this. I hope diet and these treatments are going to help me. Thanks for all the information posted here (this is a great site)
Is there a problem with using Elmiron? I haven't tried anything other than that and DMSO (That wasn't fun, by the way) I think I just had a 'flair-up' it seemed to last about a week? Is that normal?
thanks, Jim

[Goodnightmoon]

Thanks to all of you!!! I am so glad you are out there and giving me advice!!

I did a lot of internet research and have decided to start with Cystoprotek because it seems to be very comparable to Elmiron (a lot of people say even better because molecules are longer and hence more "medicine" gets absorbed) and it is all natural ingredients. Nevertheless I understand some people have gastro side effects with it - I will see. It is OTC, which has the disadvantage of being extremely expensive.... There is always a downside or two, right?

I would love to do the instillations because that sounds the most logical to me: get the medicine right there where it is needed! And if I could do it myself even better!!! I just remember when ever I got a catheter I would get a bladder infection the same evening - so I am so afraid to give it a try...

As for diet: it is key, absolutely agree. And Prelief is my "best friend" for eating out. What is the candida diet? Really admire everybody who stays away not only from the IC food but also from sugar... Sometimes I just need some comforter... Still trying to find some more fruit I can tolerate beside pears, melons and blueberries to get some more natural fiber and vitamines, but it is hard.

[Goodnightmoon]

Oh, almost forgot:
@ Jimmydicksen

As far as I know there is no "problem" with Elmiron, it is FDA approved and has helped a lot of people!!

It can cause hair loss with a low percentage of patients, which is REVERSIBLE once you discontinue the drug.

What I struggle with is that it is said to have a lot of gastro side effects and since I have a IBS tendency I would hate to take any chances unless absolutely neccessary.

So your doc really is the person to talk this over with - I was just looking for alternatives for my particular situation: early stage IC and a very sensitive stomach.

Hope this helps!:hi:

[jimmydickens]

Thanks fo rthe information goodnighmoon, I wondered about Elmiron because of what Emma Peel said. I can live with the hair loss not the pain. Heck, I'd shave my head I f I would help.:bonk: I haven't had any gastro side effects so what the hack. I just ordered some prelief to try & I've been taking stinging nettels for a few weeks now. I haven't talked to any men with this disease yet. My urologist took two years to discover what my problem was. He made me think I had a mental problem...heck, men don't get that......geeze. Anyway now I say :bow: to him!

[Goldfinch]

There seems to be some confusion about when side-effects are experienced with this drug.

As far as I can tell, and I know this can apply to other drugs too, the approximate or possible length of time it takes for someone to see the full benefits of a drug is not necessarily the same as the time it takes to have side-effects from the drug.

One example of this would be SSRIs. Side effects of nausea may happen the first day, but most people take weeks to respond positively to them, if they work for them at all.

Elmiron may take up to a year to become effective, although it seems like many who find relief from it see results within six months. Only a small percentage suffer hair loss, and most don't see that happen right away. However, recently there were a couple of posters who reported hair loss very shortly after starting Elmiron. One of the more common side effects of Elmiron is gastro-intestinal. If your stomach doesn't like Elmiron, you many know it in a few days. It's important to keep in mind, too, that some who are recently diagnosed are put on more than one drug, so it may not always be easy to tell which drug is causing which side effect.

Personally I think that it is helpful to stagger new drugs. If a doc recommends more than one drug, it might be helpful to suggest starting on one for at least two weeks, then adding the next one. You may find you don't even need the second one, and you will certainly have a chance to see if you have headaches or gastro-intestinal side-effects.

[an0bgobeloba]

hi! and welcome. you can see what i'm taking in my signature. i just wanted to say that i wish that i had started elmiron right away after getting diagnosed. i wanted to see if the cystoprotek would work first. it has been a huge help, but i still wish that i had gotten those extra months in with the elmiron. the elmiron isn't working for me yet, and i'm sadly beginning to face the reality that it probably won't. but i'm not giving up yet. i hope that you have much better luck than i have so far...be sure to let us know what you decide.