Just about used up the whole prescription pad

[Taramc]

Hey out there... thought I'd get diagnosed today, but for some reason the lab forgot to check for mast cells in the biopsy they did two weeks ago during the hydro... even though they were asked to specifically.

OR they just didn't include the results they gave my VERY BUSY urologist, who says she'll call them but...yeah, right. I LOVE being at the mercy of doctors and labs!

But what the hey, I said "can we just treat it like IC without actually saying it?" and my uro was like... SURE. So that's it. I have it. Says ME. With how diet sensitive I am and how completely RUINED my summer was, I can't imagine what else this could be.

SO here's my arsenal. Looks like I'll have to hit two seperate phamacies plus a medical supply store tomorrow. FUN.

1. Marcaine for weekly self-instills
2. Heparin for weekly self-instills
3. Pediatric catheters because I whined about urethral irritation
4. Lidocaine gel (again because I'm a whiner haha)
5. Elmiron (surprised?) She said I can also empty two capsules into the instills
6. Zyrtek - I guess that's the antihistamine
7. Elavil - that's the one I'm scared of... I hate antidepressants

Add this all to the Enablex and I'm really on a lot of STUFF! I HOPE I GET BETTER! I hope we ALL get better, of course.:toilet:

Opinions, anyone? I had no idea Elmiron could be directly instilled in the same form they prescribe orally. But I guess that makes sense.

[GriffsMommy]

Oh lord Tara,
I can't believe they didn't check for mast cells with the biopsy samples! It seems to be that you're having a horrible time with everything.
It seems like you got some pretty standard meds. I know it's a lotta stuff but obviously alot of that is for instills. Lord how I wish I could try instills but that's another story.
I have heard of others using the Elmiron pills as part of an instill so that doesn't seem very strange.
As for the Elvail I've been on it for awhile now and honestly it doesn't cause me any problems. It doesn't make me sleepy anymore and I don't think it's really helping with the nerve pain much either but I'm afraid if I stop it my pain might get worse which I couldn't handle at this point.
I hope all of these work for you and start to make you feel better you really deserve it.

[Briza]

Hey Tara
Good work on getting the stuff you need! I have high hopes you'll be feeling better. Don't worry about the Elavil...what dose are you on? I started and remained on 10 mg....I think that's the lowest dose, but my dr said the tabs can be split in half, if necessary. They usually say to take it at night, like right before bed, but the morning groggies can be avoided by taking it around 7 pm or a few hours b/f you go to sleep...it shouldn't knock you out right away but once you DO go to sleep, it will help keep you asleep thru the night, without the nighttimes pees. It works very good for me for frequency and urgency and starts working within a few days. And about the dose...many start on a low dose like 10 mg and slowly titrate up to the lowest effective dose, and that also helps with the groggies.

You know, my biopsy report didn't say anything about mast cells at all...I don't know if they didn't check for that or if there just weren't any and that's why it wasn't mentioned in the report. I don't see that uro anymore, so I never asked her about it and at the time I didn't know about the mast cells, so didn't know to ask for them to check for that. So I don't know what happened in my case. But what the bio report said was that my biopsies showed inflammation indicative of IC and also I had hunner's ulcers and visible gloms (sp?)

But what matters the most is that you now have a very standard protocol IC treatment plan and with time, treatment, and diet, I have very high hopes that you will get your symptoms under control. Like I mentioned in one of our emails, I know it seems like a VERY LONG TIME that you've been suffering, but you have gotten so much done in really a very short time, you aren't even a year into this, and hopefully with your getting treatment so quickly you will be seeing results very soon. Good luck with the Elmiron instills...keep us updated on how that goes, and please remember to watch your diet and keep the stress as low as possible....those are 2 major, and most of the time, avoidable triggers, if we do what we can to control what goes into our mouths and how we handle our stress.

Best of luck to you!! My email is down...if I haven't responded that's why...the site is going thru some changes and hopefully will be in working order by tomorrow.
Bri :)