budenofalk vs prednisone for crohn's

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Hi,

Is anyone on budenofalk or prednisone for crohn's and do you have any side effects.

I am currently on budenofalk but they are very expensive, although I have only been on them for 7 days, I only feel slightly better (sometimes)

I understand that prednisone have a lot more common (severe) side effects, so I was just wondering if anyone can shed some light and how it took before you started feeling better.

Thanks

 

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11 Replies

  • Posted

    Hi Grace,

    I'm very newly diagnosed and have been on Prednisolone for 4 weeks. I was petrified when I read the side effects, but I have been very lucky and feel that they have worked so well.

    Prior to starting them I was in horrific pain for over a month which was always constant and this started to disappear after 3-4 days of being on Prednisolone. I was really emotional and had mood swings for the first 2 weeks and I have terrible problems sleeping - which are the side effects I suffer with - but it's helped so much with the pain that I can do things on a day to day basis now rather than being doubled over in bed.

    I hope you manage to see the benefits from your medication and don't have too many side effects. You can also get a prescription card (search on NHS) where you pay £10.40 a month via direct debit for 10 months and it covers the cost of all prescriptions rather than having to pay £8.40 every time you get given a prescription.

    I hope that helps. Good luck

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    • Posted

      Hi Fran,

      Thank you so much for your feed back, I really appreciate it and I'm so glad this medication has worked for you.

      I did forget to mention that I live in Australia so the health care scheme is  different to the UK, however I do believe that I can get prednisolne alot cheaper than budenofalk which is why I am trying to do some research myself but I am also petrified of the side effects sad

      I guess I just have to wait and see what the outcome will be on these tablets and then perhaps re-think changing the prescription if necessary.

      Thanks again Fran and good luck to you too.

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  • Posted

    Hi, I was on prednisone for Ulcerative Colitus for 9 months and the only side affects I had was settling me down, if you call that a problem thank goodness l.o.l..  I did have some hair loss but nothing that was noticable and not great clumps. I  also had to be very careful of being in the sun. They took about 4 weeks to get into the system and before I started noticing a difference but after that I was on the right side of the illness.  Yes I did feel a bit down now and again but not sure if that was the tablets or just me.  After 9 months I was taken off them and put on to Azathioprine.  Again no problems although I had blood tests every 3 months to check on all my functions and luckily nothing was affected.  I was on these for 4 years and left them off. I have been without Azathioprine since January and touch wood, I have been OK.  I also take Pentesa which I am told I will have to take continually and I have taken this ever since I was first diagnosed at the same time as I was taking Prednisone and Azathioprine.  I hope this helps and I hope you start feeling better soon.  Although please bare in mind that Crohns and Colitus effects people in so many different ways and what is good for one is not for others.
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    • Posted

      Hi Maureen,

      Thank you for your post, it does shed some light on the this drug and good to hear that the side effects haven't been too bad.

      I'm so happy that you're in remission and I hope you continue being healthy.

      I've just been recently diagnosed and put on budenofalk so I guess I'll have to wait and see how it pans out for me.

      Fingers crossed and good health to everyone with this horrible disease.

      Take care.

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  • Posted

    Hi Grace,

    I believe budenofalk is the drug budisonide (name varies between companies).

    I'm recently diagnosed and just had a 12 week course but may be going back on them. I think it was 3 mg taken 3 times a day.

    After 4 or 5 days I felt a little better but didn't really get going until 10-14 days in total. Every one's different but they changed my life with significant reduction in symptoms and fatigue. Coming off I'm feeling worse - so they definitely worked for me.

    No side effects to report. Fingers crossed they get going in the next week for you.

    Matt

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    • Posted

      Hi Matt,

      Thanks for you reply.

      You are correct with the name of this medication and the mg is the same (3mg)

      I also take 3 tablets a day and like you I haven't had a dramatic change in the pain and yet I've been on them for about 8 days now, it's a terrible shame that they are so expesive, which is why I am comparing prednisone & budenofalk, but thankfully I have not had any side effects so far.

      I'm so sorry to hear that you're feeling worse since coming off them, what does this mean? do you need to continue taking this medication?

      Well, I hope you feel better soon and take care.

      Thank you for your kind wishes.

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    • Posted

      Hi Grace. I have always found  prednislone(oral) helped to calm down colitis flares in 2-5wks depending on severity of flares. the only side effect i had was puffy face which disappeared once i tapered off them-no other problems at all. my skin was super smooth & i didnt need to exfoliate for weeks!!! i know thats not good really as steroids can thin the skin, but again after i tapered off, skin normal again & i had to start exfoliating again...... important to stay out of the sun/put high sunscreen on while on them as you can commonly get skin sensitivity to sun. i also tried "clipper" steroids which target the bowel but they were useless compared to the high effectiveness of oral pred. i found 35-40mg daily for couple of weeks, then next few weeks tapering down to stop were very effective. Hope you feel better soon hun. xx

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    • Posted

      Hi looloo,

      Thank you so much for your reply.

      This is so reassuring knowing that the side effects haven't been all that bad so far, perhaps it's something I should look into should I need to continue taking steriods.

      I'm curretnly paying $133 for a box of budenofalk and that's just for a month cry.

      It's good speaking to others with the same/similar conditions  because you get more satisfaction than what you would  speaking to a doctor, they only tell you the bare mininal, then it's up to us to research, thank goodness for Google, hehehehe.

      Take care darling and continue being healthy xo

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    • Posted

      You're welcome Grace.

      You probably know though that steroids are only for short term use to get you under control again, & your specialist needs to sort you out with other  meds that you can use long term to keep you in remission once your crohns is more stable again.

      xxx

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    • Posted

      Thanks Grace for your reply. Not terrible but not great. Having a month or two of feeling good is pleasant and easy to get used to!

      I'm hoping to go on to Pentasa v shortly which apparently works well if the Budisonide has helped - based on them both having an anti inflammatory effect, although Pentasa isn't a steroid and is safe for continued use - subject to side effects blah blah blah smile

      Some doctors would prescribe budisonide indefinitely as it's predominantly absorbed in the gut but they prefer not to if at all possible. I'm no expert but have quizzed my doctor heavily!

      I hope they're starting to do the trick before your bank balance starts to hurt too much! I'm sure they'll kick in soon...

      Matt

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    • Posted

      Hi,  I have been on Pentasa since I was diagnosed 5 years ago and have been told I will be on them all the time unless things take a turn for the worse.  When first diagnosed I was on Pentasa and prednisone, then left prednisone off and was put on Azathioprine and now only on Pentasa.  My consultant was very good and I am sure that by using all the medication  as above, has hopefully sorted me out for the moment.  Plus I watch very closely what I eat and my stress levels.  I think all this is what is keeping me under control at the moment.  I hasten to add that I am touching wood as I type this.  Good luck. 
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