Not entirely impressed with my new GI.

Not sure what the equivalent is but I take three sachets of vsl ds a day.

Eight capsules = one packet of VSL #3 *DS*. I take four of those packets/day, which is a maximal dose equivalent to 32 capsules daily.

It's not an exact science. My concern isn't your precise dose, but that you'll likely run out pretty quickly, and be left with an expensive question about whether to buy more. It takes a while to work.

Your pharmacist is very unlikely to have a clue, and in reality no one, including your doctor, knows what dose might help best. A practical approach would be to try a dose you can imagine paying for long-term without unacceptable hardship, and see if that works for you.

Wow, that's a lot! I've mentioned the DS to her with no response. I guess I'll figure it out...and keep pressing the ins co....I'm not dead in the water on that front yet.

But the reply may not have been from your GI. It may have been from one of her office staff. I have a couple of doctors who I love but their staff is less than perfect. Sometimes it's hard to reconcile that love/hate thing but the 'bottom' line is that if you like your doctor, then try to ignore what goes on with her staff. Your GI sounds pretty awesome.

kathy

I'd go ahead and talk with the pharmacist. Pharmacists know a LOT more about the meds you are taking than the doctors who prescribe them. I'm actually somewhat impressed that your doctor gave you that recommendation.

P.S. I take one sachet a day, and I also take a couple other probiotics throughout the day to mix things up a bit.

VSL#3 isn't really a medicine, it's a probiotic supplement similar to Culturelle, Align, Walmart house brand and other probiotics which are sold over the counter. For some reason, VSL#3 is more expensive than the others and a prescription is required, but just because a pharmaceutical company needs to make a ton of money off of you does not change the essential nature of what it is you are taking. For me, VSL#3 was, and is, no different than the other above-referenced probiotics, but then again, my pouchitis has never been completely in remission such that any of them really had a chance at maintaining a remission.

For this reason, I really don't understand why you would hold this against your doctor. It's not really a valid objection, in my mind, because VSL#3 isn't a real medicine. It falls into the category of a health supplement.

When I had a prescription for VSL#3, my doctor told me he did not really think it would work curatively, but to try it anyway. You may have different luck if you achieved a true remission.

Also, I think there are different schools of thought on the proper "maintainance" dosage of VSL#3, so had your Doctor given you advice on a recommended dosage, it would not have been due to adhering to an "industry standard."

Thank you for all the suggestions. CTBarrister, like I said in my original post, there have been several issues with this doc that I was too tired to detail. However, she has been able to provide me with what I need for now. For that I am incredibly grateful.

Hope it helps you to know that others (myself included) are very frustrated with some things our docs do. I stick with some of those docs because I recognize the good they do for me far outweighs the bad.....not really bad, just highly irritating practices!

Yes, of course I won't throw the baby out with the bath water. I suppose the validity of my other concerns aren't clear bc I didn't detail them.

The short list....she felt there was no need to check bloodwork when I first came to her about my symptoms, including fatigue. I had to go to a separate doc to get that taken care of on my own. Given how weak I was, that was an extra trip and copayment I didn't need. She doesn't want to touch my stricture bc of the j pouch surgery I already had....no that doesn't make sense, but I had more pressing issues to clarify with her at a very rushed visit. I was given two months of flagyl with no instruction about how long to take it. Called the office to find out and was told to just take it until my next appt. that was from theNP bc the doc was unavailable. I took it for three weeks. I was exhausted and sleeping all the time, but she insisted it wasn't the flagyl, even though I've googled and found there are people impacted this way. At this point in my life, I no longer have patience for being told what I am feeling isn't real. As soon as I stopped the flagyl, the sleepiness and fatigue stopped. I discussed alternating cipro and flagyl to avoid yeast infections should I need to start antibiotics again. She felt there was no need and discounted my question about trying cipro given my reaction to flagyl (which, as I mentioned, she also discounted). Ins declined VSL3 coverage but said to have the doc office call for a peer to peer review. She wouldn't do it saying they don't call ins companies and recommended I write a stern letter. All well and good, but when the ins co offered a means to work thru it with the doc, an inconvenient call for her would have made a big difference for me.

So, yes, she absolutely gave me what I needed to get back on my feet, if I have recurring issues I hope she will come through, listen better or I may need to piece what I need together through other docs.

Ok, so I am finally back to trying to figure out the dosage for VSL and called the pharmacist, as instructed by the GI office to find out.

As I expected, the pharmacist thought it was an odd question. Of course, said it varies by patient, not a science, he doesn't know my medical history and the GI should be able to tell me the dosage. Yep, yep. I agree!

So I had him look up the Rx that was sent in for me....that I haven't been able to fill, bc ins denied it. It says to take 1 capsule 4 times a day.

I have never had such a run around over drugs. Maybe I have been lucky?

So now I am off to battle the ins co and see if I can get it covered....or purchase online for now.

I think the confusion may be from the fact that some people experience bloating and gas when they first start VSL#3 and they've found that starting out slowly, i.e., with a low dose, works best. And then they increase the dosage.

The VSL that a doctor can write a prescription for is VSL#3DS. Is that the one that was ordered for you?

kathy

No, she ordered VSL#3....not DS.

Ask her if she can order the DS - insurance companies often pay for that one.

kathy

Yes, I believe you or someone else mentioned that previously. I faxed this request to the doc along with other specific requests bc things have gotten lost in translation with the secretary.

All I got back was a generic letter from the GI at my 3/15 appt that she penned and instructed the office to send to me on 2/20!!! I never received that letter.

I was told by the ins that they don't cover DS either so I would still have to appeal.

She told me at my appt that she doesn't deal with ins co's and to use this generic letter to send to them.

With all the questions I had to get through with her, I didn't push on the DS. I'll do that if I still get nowhere with ins and her letter.

The problem is, DS or not, VSL#3 is not PROVEN to be superior to other probiotics. It just has been studied in some good clinical studies for pouchitis, where most other probiotics have not. The result is that VSL#3 proved to be better than placebo, for maintenance and for mild pouchitis. So, that really does not get insurance companies excited, especially considering the cost.
http://www.ncbi.nlm.nih.gov/pubmed/20556748

Bottom line, you may find that other probiotics might keep you in remission just as well. The only way to know is trial and error. You may find that taking antibiotics a few times a year is good enough for you, so spending a lot of energy trying to get insurance approval may not be worth the bother. For myself, I never bothered with it, because the occasional course of Flagyl was fine with me.

Sort of a "pick your battles" type of thing. Now, if it was proven to be superior to everything else, I might go there. But then, the insurance companies would probably be on board too.

Jan

Thanks, Jan. I will definitely keep that in mind and not make myself nuts over it, lol.

Who knows, maybe I will get lucky and this whole pouchitis thing will fade away as a distant memory. I can hope and I do hope, particularly given how quickly I responded to flagyl.