New to CC and needing help

[Gary]

Sheila,
Thanks for the information. We actually live in Marion County, but I will keep your suggestion in mind.

Jean,
Thanks for the contact on the Vit. D testing.


Gary

[Gary]

Hi All!
I went back on the sulfasalazine that I had a scrip for since things flared back up this past weekend, but I called my GI Dr. to get prescribed the Entocort. The SS was making me feel worse than better. Well after dealing with nurse Kratchit who shouldn't even be in the medical profession she called me back and said they sent in a scrip for the Entocort. Great! Only problem now is that my great HMO health care provider is saying I need a special referral to get it and it may take up to two weeks to get approved if at all. Is it ever easy????????

[Sheila]

Hi Gary, I hope the entocort works well for you. I also had to get permission for the entocort Rx. When I went to the drugstore to pick it up the co-pay was $800.00!!! The co-pay for budesinide (generic Entocort) was about $400.00. I use a Canadian pharmacy for other meds and found I could get it for under $100 from them. My GI doc, Bernie Stein, recently wrote an Rx for budesinide to be filled at a local compounding pharmacy. It cost $89.00. He did this for a paitent and an acquantance of mine, because of her lack of insurance.

Good luck and I hope you get relief with Entocort. It was a miracle drug for me. The WD stopped the first day I took it.

Sheila W

[Gary]

I have a good friend in So. Fla. that deals with a compounding pharmacy daily. He may be able to help if the HMO can't.

[Leah]

So frustrating! After hearing horror stories about people trying to get Budesonide or the high price, I realized how good my Kaiser plan is. I got my script for $35 a month. Sorry you have to deal with the red tape Gary. Hopefully, the silver lining will be that when you do get it, it works! In the mean time, have you tried OTC Immodium or Pepto?

Leah

[CathyMe.]

How frustrating Gary. I too have read the horror stories and am so thankful to have the coverage that I have. My GI was concerned when she first gave me the script but my insurance never blinked an eye and I think my co-pay was 10/month. I hope you can find a script Gary and it works for you. It was literally a life-saver for me and I got a reduction in my WD after a week of taking it.

[Gary]

Doing the Pepto. D isn't terrible, just the abdominal gas. Wish it would just go away. Taking 2 or more 180 Gas X daily. Sometimes it works other times no.

[Leah]

Are you staying away from sugars? They can wreak havoc when it comes to gas.

[Gary]

Not sugar too! I will have to check

[Pat]

That might include fruit too. Sorry.

Pat

[Chrisdat]

Hi all, I started taking Pepto 5 weeks ago, 9 a day. (Still on 9 MG. Entocort).

Seemed to have small positive effect. Some loose form to some BMs., which up until Pepto, all WD. But still had daily explosive WD. But, now it was black explosive WD. (TMI).

At about 3 weeks, the black disappeared. I was slightly worse. How curious all my BMs where light brown. My tongue was black, but not BMs, which were still D, but not always WD, and no trace of black. Why do you think this is? I told my Dr., she had no idea why I lost the black. Could it be I wasn't absorbing the Pepto? Not sure how Pepto works, but if someone knows, that would be interesting.

Now, 5 weeks into Pepto, amazing! My BM's are black, again. And, I now have some black loose stools, that are small amounts, with significant form. No WD, no explosive WD. Just 8 or more BM's, that are black, with less urgency.

How long can I stay on Pepto? My Dr. says indefinitely, but it seems I read 6 weeks. Why only 6 weeks?

Once off Pepto, do I risk relapse? In other words is Pepto only effective for the time I'm taking 9 a day?

Lastly, does anyone have a link to Dr. Fine's official protocal?

Thanks, Chris

[Sheila]

Good morning, Chris. I did the Pepto regimen before I was officially diagnosed and it worked for a very short while. After a few weeks of Normans, the WD came back and I never took Pepto again. You are supposed to take the pepto for 6 weeks and then stop. It is not something that is meant to be an ongoing treatment.

If you are still having D and WD, it is time to try Entocort (budesinide) and/or a strict diet of no gluten, no soy, no dairy and (perhaps) no eggs. I had Enterolab testing and it was a life saver. There was no more guessing about what to eat and I had confirmation that I have the celiac and gluten intolerence genes.

Go to www.enterolab.com. That is the Enterolab website and you will find links to Dr. Fine.

Sheila W

[Sheila]

Chris, I just reread your post and noticed that you are already taking 9 mg of Entocort. I think Tex will give you a better answer than I can about the appropriateness of taking both Entocort and doing the Pepto regime.

If you don't address your food intolerances and stop eating what is making you sick, the Entocort will stop working. Hopefully, Tex will give you the correct information about Pepto and Entocort use.

Sheila W

[Chrisdat]

Thanks Sheila for quick reply. I am currently:
DF/GF/SF/, alcohol free, chicken-free (I react) low fiber, low FODMAP, Egg-free, Nut-free, and most importantly for me, low-histamine, and avoidance of all DAO blocking food, drink, and meds.

So meat, peeled and seeded low-fiber veg, cooked well, and coconut oil or other healthy fats, is my complete and total diet. No cheating.

I see Dr. Hamilton at Brigham and Women's Mastocytosis Center June 20th. Can't wait. Mast Cell involvement is a real problem for me I believe. Anti-histamines, Pepto, Entocort, Histame, Querticin, and L-Glutamine all seemed to have helped. But, still losing weight (at slower pace), and D is still with me 100% of the time.

Just trying to hold on till Dr. Hamilton appt. my doc and GI doc, agree, we should explore what B&Women's has to offer, before Predisone.

[Chrisdat]

Oh BTW, I'm looking for Dr. Fine's writings on Pepto. Can't them at Enterolab link.

If anyone has - thanks. -Chris