I think the flare is over!

[ICLori]

Slept last night without pain meds, and didn't even have frequency - only got up once during the night. I used to get up once at night most of the time back before I ever got IC, so getting up once is really normal for me.

I'm so happy the flare is over, and I really do feel great today.

My doctor put me on the full dose (300 mg per day - 100 mg TID) last Thursday and I thought I was starting to feel better but I wasn't sure...last night I was definately much better than I had been, so I'm cautiously hopeful that the increase in CyA might be a helpful thing to me.

Blessings, hope everyone else is having some good days and nights,
Lori

[ICNDonna]

You've had such a horrible time. I so hope last night was just the first of many.

:grouphug:
Donna

[BeachBaby]

Hey Lori!

That sounds VERY hopeful. I bet you are real happy to be reporting those results.:woohoo:

I truly hope this continues for you, it's time for a break. If you should have a bad day here and there, I hope it doesn't get you down, as even those of us who have enjoyed so much success will have an off day. The important part is resuming the successes we gain.

I wonder too if no matter how successful we get with our treatments, if we are ever 100% - 100% of the time. But to feel so much better is fabulous, right?

So, don't push it right away, but go do something really fun for yourself to just enjoy a day w/o IC dominating it! Lots of good wishes to you and very happy to read this! :smile tee

[ICLori]

Thank you, ICN Donna, I really appreciate it! :) I'm hoping too that more good days will come. Maybe this higher dose was where I needed to be.

Thank you, Betsie, also. I'll try to not get so down if a bad day comes again. I'm just hoping that the good days will outnumber the bad days from here on out. That would be nice!

I felt well enough to actually go to the gym and workout this morning - it was nice! :)

Blessings,
Lori

[kelly McC]

Glad you got some rest last night :woohoo: Hope your feeling better and refreshed today.
Take care,
Kelly

[vm]

Yay!!!!!!! :) I really, really hope this is the beginning of many nights of good sleep - and days without discomfort. :kissing:

[SharonA]

:woohoo: Hope this is just the beginning for you. :)

[ICLori]

Thanks, everyone! I know I'm not all the way there yet - don't want to push it - but it was nice that I had another night where I didn't need pain meds.

Blessings,
Lori

[Trishann]

Lori that is really good news. I hope this higher dose will continue to work for you.

Hugs and more hugs, Trishann

[asilva]

That's great, Lori. You deserve to feel good!!! May this be the first of many good days to come!!

[ICLori]

Thank you both so much! :) I hope for pain-free days for all IC'ers...

Blessings,
Lori

[Franny]

I'm pulling for you Lori! Franny:angel:

[dancemomof2]

:woohoo: Glad your feeling better, nothing worse then a IC night.

[Kara29]

Lori,

I am so glad you had a good night's sleep. I hope you have a good night's sleep tonight as well and many more nights to come! I hope this higher dose is the magic you so deserve!

I will be thinking of you tonight! I hope you have some sweet dreams too!

HUGS!

Kara:smile tee

[evanseri]

The one positive of having IC is that we never take the feeling of "normal" for granted. Just sleeping through the night or a couple of pain free hours can put a large smile on my face. I am really gald to hear that one of you is feeling better, it gives hope to all of us who are slowly losing hope. Hope this remmision lasts! Keep up whatever you are doing.
Erin :)

[ICLori]

Sigh...spoke too soon...had to take an Ultram last night - but the pain isn't very severe at all. I do seem to still be better than normal.

Still worrying about whether or not I'll have to stop taking CyA because of my kidneys showing they are in distress from the CyA...1.5 is NOT a good creatinine level....the doc said we'd just redo the test, in case it was an aberrant result, and then just go from there. So we will see.

Blessings,
Lori

[Bozema]

Hi Lori-

Sorry to hear you flared up a bit. Perhaps just reducing your dose can get you creatinine level down. It may be time to go to a maintenance dose.

I thinking I'm reaching that point too. Though my numbers have been fine, I have been having little problems like fingernail infections going on. I've been at this since June and I think it's time to start cutting my dosage back. Something I plan on discussing with the doctor next week. My flares are reduced now, but by no means gone. I suspect though for me it is due to working less and more pain control as much as anything.

Another question - sort of a gross one - my urine absolutely stinks right now, especially when I am flaring. Are either of you experiencing this symptom? I am getting concerned about it.

-Laurie

[ICLori]

Hi, Laurie - hmmm...so you aren't in remission yet either? I mean, I guess you are better, at least somewhat better. For me...I'm not 100% sure that I'm all that better. Some days I think so then other days I think I'm not. If I am better, it's not a really huge noticeable difference. So I have to say I've been disappointed by this drug so far.

I'm sorry you have been having the problems with infections...I've been lucky that way but my kidneys are going belly-up fast, LOL....

My urine doesn't stink now, or on CyA in general, but in the past, it would have a very peculiar stink to it when I was flaring badly - and it wasn't infection, wasn't vaginal infection, nothing like that. It was just the smell of an IC flare (for me.) Several others have reported (not on CyA) that when they flare, they have that strange odor too. Generally it only happens during the worst flares. And we get checked out for bladder infections...no infection...so who knows?

Anyway, it's still a good idea for you to monitor for bladder infections frequently, especially since the CyA lowers your resistance. You might very well be having another bladder infection.

So you are going to cut back on the dose even though you haven't achieved full remission yet? I wonder why it didn't work as well for you this time? I think you must be very disappointed, maybe even more so than I am, because you had that one period of time where you really felt normal again, like you didn't have IC. For me, I didn't really know if the med would work for me or not so I was trying not to get my hopes up too high.

The problem is, my creatinine levels went up (to the level of mild renal failure) while I was on the 3.0 mg per kg - before I went up to the higher dose. That means that I showed damage just on the "regular" dose. If I cut that back by much, I don't see what chance it has of working at all....maybe it's time to just call it quits period, as far as CyA goes for me...

Thanks for posting...boy, this CyA thing just hasn't worked out for any of us really - at least that's how it seems to me. :(

Blessings,
Lori

[Bozema]

Rats Lori - I'm sorry to hear about your creatinine levels - my uro assured me that reducing or stopping the cyclo would reverse the problem. It's just a bummer that you may have to stop using it.

As for me, I'm better but not fully in remission and the flares don't get as bad or last as long. I'm still questioning if it's the reduced work hours and being careful about physical activity or the drug. I'm just not sure. But I think what we may do is taper me down from 300 mg a day to 200 mg for a month or so and then 100 mg. We'll see how I do. My uro did not give me my specific numbers but told me I was well within normal ranges. Cast iron kidneys I guess with a crummy bladder.

The stinky pee thing really has me wondering. It started a couple years ago before I was symptomatic and would appear right before my period and then taper off after it started. I once mentioned it to my primary care doctor at the time and he looked at me as though I had two heads. If I had known what it meant back then I might have pursued it further.

My period is due in a few days and I also seem to flare worst right before my period, which might explain today's episode. And with it came the rank pee smell which I have been experiencing during flares lately. Today is the first I've heard anyone else say they've experienced this issue. What the heck is this about? I wonder what causes it and why? Is this a common thing?

-Laurie

[ihurttoo]

Oh Lori! I am so sorry that the flare returned. :( I was so hoping that this was finally going to be the relief you have been deserving for so long!! I dont know if the CyA will work out or not, but I know that if there ever does turn out to be something to put a bunch of us in remission, you will be the one to find it and tell us all. You are always the one who is up on the newest research, Urological conference transcripts, and such. It amazes me how you find all this stuff! But, somehow you do, and I know someday you will find your own miracle and help many others in the process. I just wish that day was today. I hope you feel better soon! Hugs, Amy

[ICLori]

Thank you, Amy and Laurie. Today has been a really good day. It's so weird, so back-and-forth. I can't understand it at all. Thanks for your kind words, Amy...sometimes I think I'm a good guinea pig for the ICN, I'm willing to try any crazy thing that maybe will help, LOL! Not many people are as reckless as I am I don't think. Only I don't think I'm a very good advertisement for CyA at all - someone will read this and say, "Oh, man, I better not take that drug, it'll make my kidneys go belly-up..."

Laurie, I'm sorry you are in a flare. I usually get bad ones before my period too. I think only those of us with the really severe cases of IC get the "stinky pee." In fact I bet if you do a search with those words, you'll find some old posts about that topic...I can't remember them very well now but I know there were some of us who were commenting on that.

I'm glad your kidneys are doing well, though, and thanks for the reassurance...I'm hoping my levels will drop back down once I taper down.

I just...well, I hate to decrease my dose when I feel like maybe I might be almost starting to make progress again. Everytime I have a couple of days, I think, maybe this will work. So I'm in that mood again, and I just don't want to cut the experiment short, so to speak. But I won't have any choice if my creatinine level tomorrow is still 1.5.

Blessings,
Lori

[Bozema]

Well Lori -

I'm in the same place as you as far as symptoms - yesterday was good, today not so good. So I dunno.

As far as the stinky pee things goes, it was really my first symptom, I just didn't know it. Strange.....

I'll put in a prayer for you tonight that your numbers have dropped tomorrow. Maybe it just was a bit of dehydration.

-Laurie

[ICLori]

Thank you Laurie - I'll let you guys know. I'm guessing it might take a day or two to get the results.

Blessings,
Lori