Prednisone to Entocort HELP!!

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dawnpice
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Prednisone to Entocort HELP!!

Post by dawnpice »

Ive been on prednisone fr 2 weeks and was starting to see a little improvement then yesterday had a major setback. I am back in the bathroom 20+ times a day and have no control. The Cramping is unbearable!!
So I call my GI and mention Entocort ad he says that is really expensive but if you want to try it I will order it. He told me I didnt need to ween off the Prednisone just stop it and start the Entocort. Is this normal???

I have called and made an appointment with a different GI DR for a second opinion, but cant get in til Tuesday.


Im confused and frustrated and just want to feel better!!
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Post by brandy »

Hi Dawn,

I can't comment on the prednisone conversion to Entocort but I was on Entocort and am now off. The Entocort WILL work. It does not work like immodium however. (i.e. it is not as fast as immodium.) I started seeing results within 3 days of starting Entocort (on highest dose of 9 mg) and by 3 weeks I had constipation. Suggest keep appmt w/ 2nd gi doc and get on Entocort with whichever Doc can get it for you quickest. I can't comment on the prednisone stepdown and even if it is required after 1-2 weeks as I have no experience here. I think someother readers have used prednisone but it seems like they usually end up going on Entocort anyways following their prednisone stepdowns. I found Entocort to be a pretty strong drug but kept improving while on it and it sounds like it is much safer than prednisone.

Know it is rough, hang in there, Brandy
dawnpice
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Post by dawnpice »

Thanks Brandy.
The pharmacy just called and it is going to cost $400 with my insurance!! I cant afford that right now so I guess I stay on the prednisone till I go to the 2nd GI DR.

I hate this so much I feel so hopeless right now!

Is there a cheaper way to get it fast??
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Joefnh
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Post by Joefnh »

Dawn you can order it through a canadian pharmacy for I believe right around a $100 for a months supply...I could be wrong and will have to look for the post here that outlines where to order it and the cost. It will not be super quick though, I believe it takes about 7 to 10 days.

As far as the prednisone, if you have not been on it too many times in the past years, this one event won't be too bad at all. You may find that you have to taper off it slowly though. I believe the systemic equivalency of the entocort is about 17% of the prednisone so while switching you may need to taper the prednisone as well while starting the entocort. The 17% is only the systemic equivalency as most of it stays in the GI tract where it is needed which makes entocort a better choice if you can get it at a reasonable cost.

I would hang in there and continue on the prednisone as it is very effective until you can source the entocort.

I'm sure someone will post the link to the Canadian pharmacy. Be sure to consult woth your doctor if you are on the prednisone much longer before you can get the entocort as a proper taper schedule will be needed.

Hang in there...I know it's tough right now but it does get better
Joe
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Post by brandy »

Hi Dawn,

Ask the pharmacy if that is the price for the generic of Entocort. I took the generic and had no problems with that. There are also some options of getting it from Canada and India but some of the other readers and Tex will need to chime in on that. I think India is the cheapest and no prescription required but I believe it takes several weeks but a number of posters use the product from India and have no problems with it. I believe you can get it from Canada faster but a little bit more $. brandy
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tex
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Post by tex »

Dawn,

You can order a generic version from India for roughly 120 bucks plus shipping, for a 3-month supply, but it takes 2 to 3 weeks to get it, since it has to go through Customs. It works just as well as the name brand stuff, though. Here's a link:

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Depending on how much prednisone you are taking, if it's not more than about 30 or 40 mg per day, for 2 weeks or less, you can probably just stop taking the prednisone and start taking the Entocort. If you take the prednisone for more than a couple of weeks, though, I would be concerned about the need to wean down the dosage, before switching to Entocort, (Budesonide), especially if you're taking more than 20 or 30 mg per day, at that point. Those are uncharted waters, despite what your GI doc may tell you, and uncharted waters can be treacherous, in many cases.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Joefnh »

Dawn a good link to use that you can order a supply for about $120

https://www.alldaychemist.com/1447-budez-cr-3mg.html
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Post by brandy »

Hi Dawn,

Might be worth a 2nd phone call or face to face with your pharmacy. I remember a lotta drama when I got my prescription from Walgreens. They had to order it in. First they told me $3000 then after about 10 minutes of key strokes it ended up being $30.00 with my United Healthcare for the first 6 weeks batch for the generic version. Specifically ask about the generic version. Sounds like you have some options. Regards, Brandy
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tex
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Post by tex »

Good point, Brandy. Also, be aware that there are, (or were, the last time I checked), two official versions of a generic formulation in this country. One is made by AstraZeneca, (the makers of Entocort EC), and their generic formulation is identical in every way, (except for the packaging), to the original Entocort EC formulation.

The other generic is made by another company, and only the active ingredient is the same, so it may possibly be priced much lower, through certain channels, (such as through certain insurance plans). There is a huge variation in the pricing of certain drugs in this country, depending on the insurance plan, and the pharmacy through which any given drug is sourced. Some of the prices quoted are hundreds of times higher than the prices commonly quoted for the same drug outside the borders of this country. Yep, we're being ripped off, royally.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by brandy »

Hi Dawn,

Also suggest the following diet for awhile. If you have someone who can make you the old fashioned kind of chicken soup (no noodles) and no canned soups from grocery store or has homemade chicken broth that might be good diet choice for 1- 3 days. If you don't have some one available to make you chicken soup option move to next step. Suggest flare food of one protein, one overcooked veggie in moderation, and either mashed potatoes or rice.
Eat the same thing for days on end. For Tex is was pork and potatoes. For me it was chicken and rice and an overcooked veggie. Eat the same thing for breakfast, lunch, dinner and snacks for awhile....day in and day out. Switching to this diet plan even b/f drugs got me to 2-3 WD per morning pretty quickly. Cook large batches of your protein, your starch and your overcooked veggie and then reheat in microvave each meal to make it easy for yourself.

We've all been there, believe me. Brandy
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Post by dawnpice »

Thank you for the link guys. I will check it out. Im basically living on ensure right now so I will go ahead and try the diet you suggested Brandy.

Thank you all I so appreciate all the support and knowledge.

Im not usually this emotional or whiney :-)
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Post by Leah »

You poor thing! Ensure is not a good option since it is dairy based. Dairy usually means a fast trip to the bathroom. Brandy made a very good suggestion. I ate a lot of chicken soup ( that I made) at first- and white rice. I know it sounds pretty boring, but you will feel so much better. Roasted chicken is yummy :)

My Budesonide (Entocort) was made by Astra Zeneca. I'm lucky though because I have a prescription plan that can only charge me $35 a month- tops ( I was charged $20). I hope you get some soon. It worked very quickly for me. I started at 9 mg. And just stepped down to 6mg. a month later.

Good luck
Leah
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Post by carolm »

HI Dawn,
I was on my second round of Prednisone when I was prescribed Budesonide (generic Entocort). My GI did have me taper off of the Prednisone but it was just over a weeks time, like dropping from 30mg to 20 mg for a couple of days, then 10 for 2 days, 5mg for 2 days then off. I started the Budesonide 9 mg per day and did well on it. In fact since I'd been on Prednisone for about 5 weeks total, I was having lots of side effects-- constant thirst and dizziness--- that went away when I switched. I also use Walgreens and have CVS/Caremark as the prescription program for my BCBS insurance. At first the pharmacy thought my prescription plan wouldn't cover it. However they ran it through a second time and not only was it covered but it was only $75 for 90 capsules. So it really might not hurt to talk to the pharmacist and have them run the generic through again.

I lived on chicken broth, baked chicken, white rice and mashed potatoes too, just like Brandy and others have described. I went GF and dairy free as soon as I got my diagnosis. It made a difference for sure. Eat simply so you know what is aggravating you. The stage you are in is the roughest. It does get better after this, but it's not a quick process. Do get on Entocort if you can. You can take it much longer than Prednisone if needed.

take care,
Carol
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Post by DebE13 »

Hi Dawn,

I finally got off of prednisone after a July - February use. The side effects were horrible for me and I would recommend the Entocort route if it's possible for you. I'm taking it right now and it helps. I'm also on a rice, potatoes, and meat diet with a few other foods for variety. It takes effort but is worth it.

I just refilled my RX for budesonide (the generic) at it cost $1370.09. I am fortunate to have excellent insurance and only had to pay $5 out of pocket.
I'm wondering if other's costs are out of pocket or the total? If I can the RX filled for the $300 version I want to investigate with my pharmacy because even if I don't have to pay it myself- the insurance company is and that reflects in premiums so I am paying for it in a round about way. I can't help but get angry about our health care system. It's horrible that someone cannot find relief because the cost is too much to bear.
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Post by Lesley »

I have entocort that I am not taking. My constipation is too bad to use it.

I have the Indian one, not so expensive, Anyone who wants them - message me.
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