Questions for Heparin Users

[Paininthe*.* ICN Member Find all posts View Profile Close Paininthe*.*]

Those of you doing Heparin Instills....

1) When you first started them, how often did you have them done?
2) How long before you noticed an improvement in symptoms?
3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?

4) If you have them done for "maintenance", how often do you get an instill?

I'm trying to figure out if Heparin instills are only for temporary, quick relief, or if they give long-term relief if done often enough. Thanks for any info ladies!

[waterflow ICN Member Find all posts View Profile Close waterflow]

Once a week at doc's office
8 months (which he told me)
2 day of relief
once a week for I think 7 years now

Only lidocaine added to it to help with the pain

[Sarojini Support Leader Find all posts View Profile Close Sarojini]

1) When you first started them, how often did you have them done?

I started doing them myself at home, three times a week.

2) How long before you noticed an improvement in symptoms?

Immediately. The instill is really calming for my bladder.

3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?

I get anywhere from a few hours to a few days of relief from each instill...it just depends on how badly I'm flaring at the time.

4) If you have them done for "maintenance", how often do you get an instill?

I do them once a week now, in general. More, if I'm flaring.

My instills are made up of heparin, lidocaine, and sodium bicarbonate.

Hope this helps.

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

When did I first start them? 2004

How long to see improvement? Instantly

How long does effect last? From a couple of days to up to a week, sometimes longer

Maintenance: My instills are PRN

I started out with 3 a week. Then I had to increase at one point everyday. Now I just look for signs and do an instill then. My OS said that I might need to always have them or I might eventually just need maintenance instill every 2-3 months.

It really doesn’t matter to me. I have no problems when I do the instill PRN

[kadi Support Leader Find all posts View Profile Close kadi]

1) When you first started them, how often did you have them done?
3x a week
2) How long before you noticed an improvement in symptoms?
Right away, I knew they were helping. Though we did have to make some adjustments (marcaine instead of lidocaine, non-latex caths instead of red ones)
3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?
I have entire good days now. Before the home instills, I never had an entire pain free day.

4) If you have them done for "maintenance", how often do you get an instill?
I now do the instillations 3x a week up to daily. Depends on how I am feeling. Most weeks it's 3-5x a week.

[Roxie2007 ICN Member Find all posts View Profile Close Roxie2007]

HI! I tried to private message you back but system said you can't receive private messages any longer (?)
It was nice hearing from you. Give me a yell if you ever visit your brother down here. Roxie

[waterflow ICN Member Find all posts View Profile Close waterflow]

I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.

[Paininthe*.* ICN Member Find all posts View Profile Close Paininthe*.*]

I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.

Roxi, I changed my email address, and evidently that caused some problems, but I think I'm back online now! You can PM me if you like.

Waterflow, did you have Heparin once a week for 8 months straight? I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?

[waterflow ICN Member Find all posts View Profile Close waterflow]

I have been having the heparin instills once a week straight for the 7 years. It took 8 months before I noticed it helped. I am now trying to do it myself once a day at home.

[purpleviolet ICN Member Find all posts View Profile Close purpleviolet]

question about msm gel

Hi Roxie - When you say that the MSM gel works for the urethra do you mean that you put some on and it somehow works its way inside to relieve that bad feeling? Thanks, PV

[Roxie2007 ICN Member Find all posts View Profile Close Roxie2007]

HI Purpleviolet,
Yes I put a small amount around the urethra and since it's a gel it works it's way around the area. MSM is Methylsulfonylmethane an organic sulfur compound. It has worked wonders for me. I've had IC for over 25 yrs and the awful urethra pain for the past 3 yrs. I started using the MSM gel 2 1/2 weeks ago and now I haven't had urethra pain in 2 weeks and no ic flares! It's amazing stuff! Roxie

[purpleviolet ICN Member Find all posts View Profile Close purpleviolet]

Thanks Roxie

Thanks for the info. I saw some advertised on the internet. I think Jacobs. Is that what you use? PV

[ihurttoo Guest Find all posts View Profile Close ihurttoo]

Those of you doing Heparin Instills....

1) When you first started them, how often did you have them done? about 3 times a week
2) How long before you noticed an improvement in symptoms? after about the 3rd one.
3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief? For me, I only get about 3 hours of relief. (But my main symptom is daily pain, not freq/urg, like most ICers.) But, when I am flaring, that is when I have freq/urg too. When, I DO have freq/urg, the instills help reduce those symptoms for a couple of days.

4) If you have them done for "maintenance", how often do you get an instill?
Since my case is severe, and I get such great relief from them, we have always done them about 3 times a week. However, initially, my Dr. told me if I got better, we could go to about once every 3 weeks for maintenance, but we never got to that stage, since my pain is always there. (The instills bring it down alot for several hours, but they still dont take it away.)

[ihurttoo Guest Find all posts View Profile Close ihurttoo]

I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?

I am not really sure why your Dr. is choosing to do them so infrequently. But, if they help you, and money is the issue, you might want to ask if he/she would consider teaching you how to self cath and letting you do them at home.

I just know that they help me alot. It isnt the only pain mgmt too I have, but it is definately a very important one for me. (I'd do them several times a day, if my Dr. would let me!) As it is, he will allow me to do them once a day, but I usually have to do them every other day, or else my urethrea gets too irritated.) But, if they help you, I'd definately ask if you can have them more often.

I do know that my Dr. normally only does them for people once a week. He sets aside one day, and that's all he does that day. But, since they helped me so much, he had his nurse do them for me 2 additonal days per week, when he was unavailable. (That was before I learned to self-cath and started doing them at home.) So, maybe this varies from Dr. to Dr. I just dont know. But, if it helps you, I'd definately talk to your Dr. about increasing them.

Hugs,
Amy

[Paininthe*.* ICN Member Find all posts View Profile Close Paininthe*.*]

Ihurttoo:

Thanks for the info. I am so sorry for your pain, you must have IC very badly. I wish you the best and pray that you can find relief soon for this awful disease. Bless you for sharing your story with us.

I'll find out about self-instills. Doctors here in Nebraska are not awfully progressive, but my urologist seems to be open to trying things, so I'll see what he says. The last instill I had seemed to give relief for about a week. That's not very long, but maybe with repeated treatments, that period gets longer.