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VSL#3 question

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Ulcerative Colitis
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Posted 12/10/2012 12:26 PM (GMT 0)
I recently started taking the capsule form of VSL#3 (2 capsules per day).  I have been experiencing blood and mucus at least once a week since my flare in August and then last week wow did I have a flare with a lot of mucus and for the first time I was running a fever of 100, which I realize is why I felt so tired and miserable.  I started back on my regimen of cortifoam (which is always an experience trying to get the pharmacy to fill it correctly) but I also started about the same time the VSL#3 capsules and this whole week has been wonderful.  I am going to the bathroom once in the am and everything looks great. (knock on wood).

I cannot say for sure that the 2 capsules of VSL I take are doing the trick because of the cortifoam but it seems different now, feeling much better, although the instructions say for UC I should be taking 4 capsules (I would be broke, if I did that, so I stick with two for now) and hopefully I can get a prescription for the packets. 

I have looked at older posts and cannot seem to find the answer to my question of the VSL#3DS prescription version. My insurance will cover 20 packets for 20 days for $50.00, so how do I spread the packets to 30 days. Do I take only half, is that was others do? I would love to try the prescription version but the insurance only covers  a 20 day supply any suggestions would be greatly appreciated.

Posted 12/10/2012 12:48 PM (GMT 0)
ceecee,

Are you sure your insurance will only cover a 20 day supply?

That doesn't make any sense... I would think it's dependent upon how the doc writes the script, so if your doc writes lets say: use 4 sachets daily, for 30 days - they should be giving you 6 boxes of 20 @ cost of one copay, no?

You may need to speak to a manager at your insurance co.

Posted 12/10/2012 12:57 PM (GMT 0)
Ceecee600, I got 80 packets for $50. That was my co- pay. I'm luck that my insurance would pay with out meeting a deductible.
I would try half . That's 450 billion! That quite a bit. Maybe you won't need the whole packet. I started with half. Now that I'm feeling better, that's what I'm going to stick with.
The pharmacy said my insurance would pay for 4 boxes at a time for $50. I asked my GI to write the script that way. I even have a refill. See how much at one time they will give you? I went to a specialty pharmacy for mine. Not all can get it or even heard if it.
Posted 12/10/2012 1:03 PM (GMT 0)
Maybe I am reading my insurance wrong but I looked it up on their internet site and it says (20 for up to 20 days)  Days Supply: 20  Quantity: 20, so I assume that means I only get 20 packets.  I am going to call the insuranse this morning to ask what exactly that means.  All these medicines for this illness are very confusing when it comes to the insurance.  Thanks all for you replies and I will see what the insurance says and if I can only get 20 then I will just use half and see if that works. 
Posted 12/10/2012 1:17 PM (GMT 0)
Sometime insurances will pay for a 3 month supply of certain drugs. Do you know which pharmacy can get the VSL #3DS ? That pharmacy the one I used told me how much my insurance would allow. They were right. They even told me how ithe script should be written. Easier then going through insurance yourself.

Half might work good for you!
Posted 12/10/2012 1:37 PM (GMT 0)
Thank you all for your replies you are great!   I did call my insurance and they do only cover 20 days of it for 20 packets, so I am going to try to get doctor to write a prescription for it and then try to take 1/2 packet a day which would be more beneficial than the pills it seems.  How do you all take it do you put it in yogurt or do you mix in water? 
Posted 12/10/2012 1:53 PM (GMT 0)
Drink it with water. People have posted how bad it is. I don't think it's bad at all. Just took mine. Im doing the half now. That should last you for 40 days. Good amt of time to see if it works for you. Hope you have success with it:)
Posted 12/10/2012 1:54 PM (GMT 0)
What insurance do you have?
Posted 12/10/2012 2:04 PM (GMT 0)
I have BC/BS Federal program, the 20 days for 20 packets is going to cost me $50.00 copay, but the pills cost at least that much and I am only taking 2 pills a day for the past week, but I do notice a difference, hope it continues.
Posted 12/10/2012 2:08 PM (GMT 0)
I hope it continues too! Good luck.
Posted 12/10/2012 3:48 PM (GMT 0)
Ceecee, my insurance paid for a 3 months supply. My doctor wrote it out for 1 packet a day but I've been taking 1/2 packet a day. I went up to 1 packet and it caused me alot of extra gas and bloating. Either way, see if you can get a 3 month supply.  Most insurance companies do that these days.
Posted 12/10/2012 4:26 PM (GMT 0)
I mix one packet in with two heaping teaspoons of orange Metamucil and about 4-5oz of water. Sometimes I mix it with some applesauce and Pysillium Seed Powder.
Posted 12/10/2012 4:52 PM (GMT 0)
i mix my probiotics with slippery elm powder in a little water.

It's not the most delicious tasting, but it's ok once you get used to it.

Posted 12/10/2012 5:10 PM (GMT 0)
I think the 20packet quantity is because they come in boxes of 20, and they do not want to be paying the pharmacist to split boxes.

You can refill this every 20 days. Or, you could say that the insurance covers 1 DS packet a day at about $2.50 per packet. So for 30 days, it would be $75 - but you cannot get a 30 day fill.

If they do mail order for 60 days, likely you could get 3 boxes for less than $50/box. Worth checking.

Also, if you script was written for 2 packets a day, then it should be 40 packets for 20 days, but might cost less than $100.

Check out the various combinations.

Also, start with 1/2 packet for about a week before moving up to a whole packet. You may get gas for a few days when it starts to work. You should notice increase in stool volume and odor. IF things work well, you will stabilize with solid stool. Some, me included, actually got looser stool after about 3-4 weeks. I had to cut back to 1/2 packet every other day.
Posted 12/10/2012 5:22 PM (GMT 0)

ceecee600 said...
I have BC/BS Federal program, the 20 days for 20 packets is going to cost me $50.00 copay, but the pills cost at least that much and I am only taking 2 pills a day for the past week, but I do notice a difference, hope it continues.

When I started VSL#3 DS, I was on 1 packet for day. At that time, I received a box of 20 packets for 20 days too. And the package said that I can refill after 20 days, and not 30 days as with all other medication. So maybe you can check if you can refill every 20 days instead of every 30 days.

Once I felt that it is helping, I discussed it with my doctor and they increased my dosage to 2 packets per day. With this prescription, I am now getting 3 boxes (60 packets) each month for the same co-pay.

My understanding is that VSL#3 DS will be refilled with multiple of 20 packets only. Hope this helps.
- RayOfHope
Posted 12/10/2012 6:25 PM (GMT 0)
Thanks everyone for your suggestions,  I cannot get mail order prescriptions with my insurance so I will try to get doctor to write prescription for 20 packets for 20 days and use the 1/2 packet which would deliver more good bacteria than the pills do (even at 2) and would cost less than buying the pills.

I will keep you all up to date on results.  Thanks again.

Hopefully my dr will prescribe it for me.

Posted 12/10/2012 7:41 PM (GMT 0)
You might have to educate your GI about it. Mine knew nothing about it. He knew the Reg VSL3 but not the DS. The nurse new more! Good luck
Posted 12/10/2012 11:43 PM (GMT 0)
Hooray Doc called in the prescription for VSL#3DS so I will pick it up sometime this week from CVS pharmacy.  Again I am only getting 20 packets for 20 days so I will take half a packet per day and see how things are.

Fingers crossed.

 

Posted 12/11/2012 12:14 AM (GMT 0)
If you can get a 30 day prescription, your pharmacy should be able to break up a box and give you 30 packets for the month.  Rite Aid did it for me.  After that, I had to switch over to the Medco mail order pharmacy.  Find out if your deductible changes if the Dr writes you a prescription for a higher dose.  Say 2 or 3 pkts per day instead of just 1. 

 

Posted 12/17/2012 4:13 PM (GMT 0)
Eph you still have not done a FT? I thought you were going to try it?
Posted 12/17/2012 4:38 PM (GMT 0)
twiggs -- no I have not tried FT.
I've been in remission since starting VSL#3DS and LDN a while back. However, if I ever flare again, I'll probably give it a go!

Eph
Posted 12/17/2012 4:50 PM (GMT 0)
Wonderful and thanks for replying. I started a thread about enemas and suppositories and see you replied. Take a look at the probiotic suppositories link in my undate on my new thread.

Congrats on your success and hope you stay well..If you did the FTY wouldnt that possibly mean you would not have to take meds like sas? I am just curious if you are happy with meds and remission or doing a FT and then remission without any meds? I beleive sas doesnt take meds and is in remission?

Steve

Post Edited (twiggs) : 12/17/2012 9:53:57 AM (GMT-7)

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