ENTOCORT, OSTEOPOROSIS, AND TAPERING

[bevfromwa]

As usual, it looks like I'm going to have to adopt a Do It Yourself attitude regarding my health!

I recently posted that my new GI, in Walnut Creek, CA had put me on Apriso, disastrous results, then on entocort, overlapping the 2 for 5 days. He is concerned that giving me a full dose of entocort will worsen my osterporosis, so made it 2 a day, then after 30 days dropped to 1 a day. I have ten days left on that prescription. I wasn't happy to discover that a co-pay for a 30 day supply of 2 a day, and for a 30 day supply of 1 a day are the same, $100. I guess that's just how part D Medicare works, but that means if the script read take one every 30 days it would still be $100. Crazy. I've had some discussions with him via email and his assistant re tapering. He responded that he would be open to prescribing a taper. In my recent post Tex said he hadn't heard of doses less than the prescribed 3 a day helping.

I've spent hours researching entocort & osteoporosis, and it doesn't seem to be all that dangerous. Am I misreading this?

Results: after 30 days of 2 a day, and experiencing a few days of almost formed soft serve, when I dropped to 1 a day it was back to D. To further confuse this situation, I'd been having leg cramps, one so bad i limped the day after. So decided on Magnesium Glycinate, 120 mg, supposedly least likely to cause gut problems. After 3 weeks, went to 2 a day, took them both at night hoping for help sleeping. I think this might have entered in to the D problem, but not sure, since I've been off mag entirely for 2 weeks. Still relatively loose, lots of gas, several movements a day.

So what do I do now? Ask for 3 a day for a month, then taper to 2 a day for a month or two, then 1, etc., or stick with the 1 a day for another month, then try every other day etc.

I realize there are very few doctors on our board, but a LOT of members who are smarter than a lot of doctors!

I'd really appreciate guidance on the osteoporosis question and the tapering.

Also I'd asked about trying cholestyramine, and he said oh, no, that could cause constipation. Well, duh, as I've read on the posts from members taking it, don't you just adjust the dose?

Any assistance in de-quandrying me will be much appreciated.

Beverly

[tex]

Hi Beverly,

I've spent hours researching entocort & osteoporosis, and it doesn't seem to be all that dangerous. Am I misreading this?

As far as I am aware, you are correct — the risk is very slight. Generally less than the risks of other serious issues associated with the more powerful drugs that are commonly prescribed to treat the disease.

Magnesium works best if you divide it up with meals, spaced throughout the day. You can take the last tablet with the last meal of the day. If you're taking enough magnesium, that should take care of the leg cramps. Most people here take Doctor's Best brand magnesium glycinate. It has 100 mg of elemental magnesium per tablet. Use topical magnesium if you're concerned that oral magnesium might contribute to diarrhea.

Have you tried taking an antihistamine? Many people find that taking an antihistamine each day as they are beginning their budesonide taper helps to maintain control (prevent a relapse). I can't recall all the details of why this works at the moment, but if you are interested in seeing why it works, the explanation is in one of my books (Understanding Microscopic Colitis)

All medications prescribed to treat MC are constipating, so your doctor's comment about cholestyramine is irrelevant. You are correct that when using cholestyramine the dose has to be carefully regulated.

I hope this helps.

Tex

[carolm]

HI Bev,
As Tex said, you are correct. Very little entocort is absorbed by the body (I believe around 15%) since it doesn't open until it reaches the gut. While you have so much inflammation you won't be absorbing many nutrients, so the question might be: which is more problematic to your healing and osteoporosis- Absorbing a little entocort or the lack nutrients? I'm thinking your doctor might want to reconsider his strategy. I also question whether a few months on entocort will have a profound impact on osteoporosis over the long haul.

I took entocort for 4 and 1/2 months- 9mgs a day for 3 months, then when constipation set in, it was time to titrate down to 6mg, and I stayed there until constipation set in again, the down to 3mg for a couple of weeks. By that point I had my diet in order and I had much less inflammation, so once I was completely off of entocort I didn't rebound or regress.

I can't speak to cholestryamine but I know others here can.

I'm sorry I don't have any profound words of wisdom but my experience and my own research says that entorcort can be very helpful. Nine mg is the typical beginning dose and that may make a difference. It may be worth trying it for the short term.

Good luck,
Carol

[brandy]

Hi Bev,

Untreated inflammatory bowel disease is heavily linked to low bone density. (Even taken out the effect of steroids).

http://gut.bmj.com/content/gutjnl/40/2/228.full.pdf

Clearly we are absorbing more bone healthy nutrition when we are not in a flare.

I have used cholestyramine. It comes in a "packet" or the Europeans would say a sachet. It is a powder so you can use as much as you want within the scrip guidelines. It really helped me and I was able to use a small amount.

Cholestyramine must be taken several hours before or after meals and meds/supplements or it can negatively effect bone density (It blocks the upload of nutrition.)

Cholestyramine is pretty benign. I asked my PCP about it and he had no problem prescribing it to me. Going by what he said it seems to be pretty frequently prescribed to people with gut issues and even IBSers.

[bevfromwa]

Thank you Tex, Carol and Brandy, I really appreciate your help.

I plan to contact my GI tomorrow and ask him for an entocort prescription for 90 pills, marked take 3 a day. That way I will only have 1 monthly $100 copay and it is the standard dose recommended by the manufacturer so I shouldn't get any complaints from the insurance company. I think I should say that I will only take the 3 a day dose until my condition has improved or if I experience constipation, then drop to 2 a day until the same thing happens. Same with 1 a day. Hopefully since I already have some entocort in my system, it won't take 1-2 months for improvement. I guess I'll cross the hurdle of dosing for a taper when I come to it because by then I'm bound to have gone through 90 pills. And I plan to offer my appreciation for his concern about my osteoporosis, but say it is my understanding that the med doesn't dissolve until it reaches the gut, thereby alleviating a lot of the side effects and the danger in that regard.

What do you think of that approach?

Thanks, Beverly

[carolm]

Bev, I think it makes sense given that you saw some improvement on 6 mg. I think that 9mg combined with your diet changes could be enough to get you started on a path toward some stability.

You’ve done your research so I hope your GI doc respects your wishes.

Best of luck
Carol

[tex]

I agree — it's certainly worth a try.

Tex

[bevfromwa]

thanks so much, Carol and Tex, that's all I needed to verrrry carefully (you know how these docs are!) word my request. I'll keep you posted, but you two gave me the courage to stand up for myself and go for what we all think is the right course of action.

Beverly

[brandy]

Hi Bev,

My nurse friend uses the phrase "What are your thoughts on......." "What do you think of" when trying to get what she wants from Docs--i.e. try to get it to be the doctors idea.

[bevfromwa]

Thanks for that--actually my daughter is trying to train me to do exactly that! I guess I need the old 2 x 4 across the head to get these things ingrained in my brain.

Regards, Beverly

[Sue777]

Hi there...... I hope you got the cooperation from your doctor that you were hoping for.

I'm in the middle of a debate with my GI about the effects of Budesonide on my osteoporosis. During a recent check up with him I told him I was doing really well on one 3 mg caplet a day and wanted to stay there. He said he was very uncomfortable with that and would be much happier if I got it down to one a WEEK. I reminded him that he told me a year or so ago that taking it at such a low dose would likely do nothing for my colitis. He then said we could compromise and he would be content if I could get down to one every OTHER day. I told him I would start tapering to that dosage when I get back from my upcoming west coast trip.

I asked WHY he was so opposed to me staying on one a day and he said that he was afraid it would cause osteo. I told him I already had osteo (mild, but established) and he really got worried. I told him I was probably due for a bone scan this summer and that if the results showed I had gotten worse I would agree with him that I need to stop budesonide, but if it's not worse, then we have no worries. I also told him I'd done lots of research and that docs in other countries have no issues keeping patients on it long term. He said he realized that but that there was no conclusive evidence that it does NOT do any harm.

Anyway, the debate is on hold until I get back from Oregon at which point I'll taper down to 3 or 4 caplets a week, and if I have a bone scan this summer, I guess we'll see what it's doing to my bones.
Sue

[tex]

Sue,

I suspect a lot of other members will be interested in following this to see how it comes out.

Best of luck with your program and the test results.

Tex

[Adele13348]

Am sitting in the ER right now in a terrible mess. I had made great progress this winter having weaned from my SSRI and slowly healed with the help of Entocort to the point where I was having formed stools and was looking forward to a summer of travel. I needed a new Rx on my Entocort when suddenly my dr decided he wanted me off the stuff, cold turkey, because he was convinced it was ruining my bones. Guess what happened? Nonstop D and inflammation, i.e. pain, no appetite AND I can't get an appointment to see him again for 2 months. So I went to the ER. My summer is shot. I'm hoping we can salvage things by September 6th when we're suppose to leave for 10 days in Ireland. Yes, Tex, you are right about GI head composition.

[Erica P-G]

Oh Adele,
I'm so sorry to hear this.

From what I've learned your Dr did a big dis-service to you by making you quit like that....it also appears that your 'safe foods' may not have been as safe as you thought perhaps. Something has built back up and you are reacting to it, it doesn't surprise me that stopping the steroid like that wouldn't create a bad episode in the first place, our bodies just can't handle that kind of change. A steroid, like we have learned, has to be weaned very slowly and that gives one time to adjust their diet, and watch for constipation so they can lower their level of the steroid just a little bit more until it is completely weaned off.

At this point I'm not sure if it is a good idea to try to get back on it or not since there is a chance of it not taking ahold like it was and causing more misery. Looking over your foods, drinks, any cosmetics, toothpastes, or stress level might be an area worth putting some time into. Are you getting good VitD and Mag in your diet still?

[Adele13348]

Am taking 4000 IU of D3 and 700 of ReMag.