cost of instills

[vickisue]

hello! I had a series of DMSO instills years ago,and right now I am 1/2 through a series of 6 instills (,heparin,lidocaine,sodium bicarb).the cost of the 6 instills alone was $190.(that's if I got all 6 at once,then $190.was the 'reduced amount' ,as could be billed as 'under a 30 day supply"). I had my husband watch them do the first instill(a $35. co-pay!),so he could do the remaining 5 at home,saving us another $175. in co-pays.I had a long talk with the insurance ,and I have heard a few people mention getting their meds for the instills through mail-order?i don't even though if the instills are working yet...by the 6th one,I will hopefully get some relief!The insurance did say if they could find one of the ingredients in the instills under their covered drug list,then I will find the instills much less expensive.(For example the compound drug store that put together the instills,if they could have billed my insurance under the code for heparin powder(?),instead of heparin sodium,it would have become a 'covered med'.but they didn't have heparin powder,so couldn't bill it as such).It all gets so complicated!if anyone has any suggestions,I would greatly appreciate them!

[L. Thomas]

Are you mixing the instills yourself or having the pharmacy mix them? The first prescription I had was for compounded instills and it was about $125 for 30. Since then I have mixed them myself. My insurance will give me a 90 day supply for a 30 day copay. I can use a mailin or there are some pharmacies that also participate in this program.

The cost for 90 instills are:
sodium bicarbonate $15 ($0.17 each)
lidocaine $5 $0.05 each)
Elmiron $40 ($0.44 each)(has been substituted for heparin as generic heparin is not available right now because of the recall heparin was $5)

I have to go to a durable supplies store for the catheters and syringes to get my insurance to pay. I can get the supplies from the pharmacy but there is a huge difference in my cost.

These are the prices I pay for supplies for 1 instill after the insurance pays their part:
catheter (I can use it 4 times per MD) $1 ($0.25)
syringe $0.10 ($0.10 each
My insurance doesn't cover the cost of needles but the durable supplies store sells them to me at cost..$15 per 100 ($.015 each).

This is about $1.17 each

[vickisue]

thanks! Can i ask you how you came to find out all this information?Did your Dr. help you figure out the least expensive way to go? Or did you work with your insurance company? my 90-day mail -order supply co. is walgreens.I wonder if that makes a difference? One thing the compound pharmacy cautioned me about is that once they mix the meds,they have to be used within 2 weeks time.when you get the meds,are they in liquid or powder form?
I don't even know where to start here! My last instill last night hurt so bad,that I am concerned ,as I have 3 more to go.They gave me a #10 size cath,even though I asked for a size 8.

[leitchfieldmom]

I have been reading some blogs about the dmso treatments. I just wondered if anyone could tell for sure they worked. I go back Aug. 14th to my doctor and want to ask to try this if I know it might work. I think he will try elmiron first. But I want to ask for other things I might try also.
Thanks.
leitchfieldmom

[L. Thomas]

thanks! Can i ask you how you came to find out all this information?Did your Dr. help you figure out the least expensive way to go? Or did you work with your insurance company? my 90-day mail -order supply co. is walgreens.I wonder if that makes a difference? One thing the compound pharmacy cautioned me about is that once they mix the meds,they have to be used within 2 weeks time.when you get the meds,are they in liquid or powder form?
I don't even know where to start here! My last instill last night hurt so bad,that I am concerned ,as I have 3 more to go.They gave me a #10 size cath,even though I asked for a size 8.


My urogyne is very cost conscious and told me it was OK to use the catheter 4 times. He writes the prescriptions for: generic 1 daily as directed for 90 days. That way I can always get the 90 supply even if I don't need one a day. Socium Bicarb and lidocaine are in vials. The Elmiron is in a capsule. I knew from the insurance company that they would cover 90 at 30 copay.

I found out about the durable supplies when I went to get the Rx the first time and said " I can't afford this, what do other people do?" The Rx tech sort of stammered around and then said.."durable supplies provider". I checked with a provider and it was covered by my insurance

The meds are very stable at room temperature. The sodium bicarbonate comes in a 50cc bottle so 1 bottle is good for 25 of my instills. Lidocaine comes in 20cc bottles or 50cc bottles. The heparin came in a one dose vial. You can keep the opened vials in a container with an alcohol wipe on the top if you want. I keep all the meds together in a little plastic make up pouch with 4 syringes and needles so that I know when I have used the catheter 4 times.

I don't premix the instills now unless I find I need more than 1 a week. I did mix 4 at a time when I first started because I needed them everyday.

I use a 8fr pediatric feeding tube (it is 15" long). There has been some discussion n the board concering personal preference of catheter size. My urogyne started me with this size and I have not had problems. You might ask for a Rx for lidocaine gel to rub on your urethra before you cath. I have a friend when she has an instill the cath sends her into a flare.

I don't know how you were taught to instill but if you read my hints you might get some suggestions that will help you.

Remember instills are not the answer for everyone. You will have to weigh the good and the bad and decide what is best for you.

I'm here if you need me..Post or PM.

[vickisue]

I have been reading some blogs about the dmso treatments. I just wondered if anyone could tell for sure they worked. I go back Aug. 14th to my doctor and want to ask to try this if I know it might work. I think he will try elmiron first. But I want to ask for other things I might try also.
Thanks.
leitchfieldmom

It took about 5 DMSO treatments ,before I noticed a change.But the change was very short-lived,and slight,so it was quickly abandoned as a course of treatment.My next move was getting an interstim device implanted 3.5 years ago.That has helped somewhat,but lately I think my IC is progressing,as I am getting more symtoms,and continuous flares.The best of luck to you-pm me anytime,okay?

[vickisue]

My urogyne is very cost conscious and told me it was OK to use the catheter 4 times. He writes the prescriptions for: generic 1 daily as directed for 90 days. That way I can always get the 90 supply even if I don't need one a day. Socium Bicarb and lidocaine are in vials. The Elmiron is in a capsule. I knew from the insurance company that they would cover 90 at 30 copay.

I found out about the durable supplies when I went to get the Rx the first time and said " I can't afford this, what do other people do?" The Rx tech sort of stammered around and then said.."durable supplies provider". I checked with a provider and it was covered by my insurance

The meds are very stable at room temperature. The sodium bicarbonate comes in a 50cc bottle so 1 bottle is good for 25 of my instills. Lidocaine comes in 20cc bottles or 50cc bottles. The heparin came in a one dose vial. You can keep the opened vials in a container with an alcohol wipe on the top if you want. I keep all the meds together in a little plastic make up pouch with 4 syringes and needles so that I know when I have used the catheter 4 times.

I don't premix the instills now unless I find I need more than 1 a week. I did mix 4 at a time when I first started because I needed them everyday.

I use a 8fr pediatric feeding tube (it is 15" long). There has been some discussion n the board concering personal preference of catheter size. My urogyne started me with this size and I have not had problems. You might ask for a Rx for lidocaine gel to rub on your urethra before you cath. I have a friend when she has an instill the cath sends her into a flare.

I don't know how you were taught to instill but if you read my hints you might get some suggestions that will help you.

Remember instills are not the answer for everyone. You will have to weigh the good and the bad and decide what is best for you.

I'm here if you need me..Post or PM.

Thanks so much for your additional advice.I wonder if my problem is that I just see a uro,not a urogyne.I wonder how I go about finding one?I live in mesa,az.(a suburb of phoenix).My last instill(still given by my husband,who,bless his heart,is still trying!) was so unbelievably painful.It felt like perhaps he put the catheter in too far,to where it was touching the bladder lining? Yes,he did use lidocaine this time,but I believed he tried to actually insert the lidocaine alittle into my urethra itself,as the time before he forgot the lidocaine(or shall we say,applied the lidocaine one 'hole' below!).by now,my urethra has had it-with another instill due today,and the 2 more after that 2 days apart.I am living on valium after the instill,and needing a pericet ,as well.I wonder how understanding my uro will be if I need a refill on my pericet (30/bottle).last time ,it was 3 months before I needed to call for a refill,due to limited # of flares,but I fear ,at this rate,(my response after each instill,and even in-between them),I will be requesting a new script after just 30 days!My fear is some dr.'s are very understanding,and some aren't-and you never know until you request a refill on pain meds,before they feel you need one!
Thanks again for all your help!