Just diagnosed with colitis...given Budesonide $$$$

Posted by pacodennis @pacodennis, Dec 14, 2023

I am having diarrhea/constipation issues and this medicine might work for the awful feelings. How did it work for you? I can't afford the cost, so is there alternatives? I am taking plenty of supplements and some herbals. Maybe a special herbal mix might work, or a different medicine?

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@pb50

Hi. Just checking in to see if you had any issues using one of the discount programs.

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Hi. I just started budesonide a few weeks ago. I had tried in the early fall. Tapered off and go system freaked back to crazy pain levels. So now planning to stay on 9 mg daily indefinitely. It's costly. Any hints on getting the cost down?
Thank you

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@pagray24

Hi. I just started budesonide a few weeks ago. I had tried in the early fall. Tapered off and go system freaked back to crazy pain levels. So now planning to stay on 9 mg daily indefinitely. It's costly. Any hints on getting the cost down?
Thank you

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Sorry about your discomfort. I have been on it for 10 days now. I am feeling better, but not out of the woods.

The posts above have some excellent instructions on how to use goodrx, to find budesonide at a fraction of the cost.

Good Luck

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@pagray24

Hi. I just started budesonide a few weeks ago. I had tried in the early fall. Tapered off and go system freaked back to crazy pain levels. So now planning to stay on 9 mg daily indefinitely. It's costly. Any hints on getting the cost down?
Thank you

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I took the drug at 9mg for 9 months with many side effects. If you go off, make sure you do a taper..mine was not long enough and caused many problems. Take care Kitty2

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@kitty2

I took the drug at 9mg for 9 months with many side effects. If you go off, make sure you do a taper..mine was not long enough and caused many problems. Take care Kitty2

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@kitty2 , Whould you mind sharing the side effects and any other details on how to take it to minimize side effects? If you are not comfortable here sharing but could on email, I will gladly supply my email address.
Thank you for any and all information.
Patricia

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@pb50

Oh that’s awful. You don’t have a Walmart pharmacy or a grocery store pharmacy?

Is he on a step down ? 2 a day would be 6 mg and that’s the level I was at by week 5.

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Dr hasnt talked aboutstep down so cant really answer that

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I take it for my Crohn,s currently because I am going through a flare. It’s way better than prednisone.

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I started this thread and it has been about 4 weeks of 9mg per day of Budesonide. I got very constipated and had to start taking 2 doses of MiraLax and a small tsp of Psyllium husk. That didn't do it so I had to take bisacodyl ( Duca lax ) pills. Then it was still "hard". Then a couple days later my diarrhea started returning.
If this is the cycle that will continue, maybe budesonide is not for me.? Also I am getting headaches. Especially it hurts when I bend over. There seems to be extra pressure in my head.? I have Peripheral Neuropathy that stems from a bad neck also. The combo is too much.
Maybe it would work best if I were only taking 6mg per day.? or I need to try another med.?

Thnx for all the replies. It does help to know others are having similar issues. It sucks! 🙂

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This was my regiment
9 mg/day for 8 weeks and then
6 mg for 2 weeks then
3 mg for 2 weeks then
off the medication

But you have to eat normally and drink fluids - I’m concerned that your stools are rock hard if you are ingesting normal diet and plenty of liquids. You should call Your GI doc in my Opinion. I had relief from incessant and sometimes incontinent diarrhea within days of starting. After that miraculous milestone, I stuck close to home for a week or so and then took the risk of picking up groceries instead of having them delivered. So I have no experience like yours.

Going to ducolax is something I would have run by my Gastro doc. Good luck.

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@pb50

This was my regiment
9 mg/day for 8 weeks and then
6 mg for 2 weeks then
3 mg for 2 weeks then
off the medication

But you have to eat normally and drink fluids - I’m concerned that your stools are rock hard if you are ingesting normal diet and plenty of liquids. You should call Your GI doc in my Opinion. I had relief from incessant and sometimes incontinent diarrhea within days of starting. After that miraculous milestone, I stuck close to home for a week or so and then took the risk of picking up groceries instead of having them delivered. So I have no experience like yours.

Going to ducolax is something I would have run by my Gastro doc. Good luck.

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Did you make any dietary changes? I did basically the same Budesonide regimen you were on but after a week at 3 mg I relapsed this past Saturday. Doctor put me back on 9 mg a day for a month and I have a follow-up in 3 weeks. I have struggled to identify my trigger foods, with the exception that I know I can't eat raw vegetables or beans. Since I've relapsed I'm wondering what else might be triggering me.

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@debhammel

Did you make any dietary changes? I did basically the same Budesonide regimen you were on but after a week at 3 mg I relapsed this past Saturday. Doctor put me back on 9 mg a day for a month and I have a follow-up in 3 weeks. I have struggled to identify my trigger foods, with the exception that I know I can't eat raw vegetables or beans. Since I've relapsed I'm wondering what else might be triggering me.

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I had soft stools for a few days toward the end - not diarrhea but not normal. I went off dairy and Cereals. And rich desserts. I took Imodium for a few days and the ship righted itself.

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