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DENIED Prednisone

Sally doing some shopping!

Sally doing some shopping!

Intro:

My name is Sally and I have lived in various countries, taking my ulcerative colitis with me where ever I go. Born in South Africa, my UC started in Canada, I was ok in England, diagnosed in Australia (6 years ago) and well, pooped in a plastic bag on my sister-in-law’s bedroom floor in a moment of desperation (and occupied bathrooms) in Brazil – fun! Now living in an apartment with 2 bathrooms – makes the world of difference!

Some more about me:

I’m from Canada, I love to travel, I love to be in remission ;)

Symptoms:

Symptoms include – urgency, blood, volcanic like explosions, watery stools and lately, very little shame…

DENIED Prednisone

I have tried many things from enemas, salofalk granules, other things that I can’t remember and the only thing that worked so far was Prednisone. I have taken it twice (2 months each time) over the years and worked like a charm.

Now I am living in Brazil and was in remission for 2 years (yes – shocked to go that long but it was great while it lasted). I just had a flare (3 weeks ago and going strong- the flare that is, not me) and returned to the doctor to then be strongly denied my medication (Prednisone) by 2 different doctors (going to the 3rd tomorrow)! Two years ago I was in Brazil and received my Prednisone without any issues.

Since then they are marketing the “new” drug on the block: Mesalazine … but hey, … isn’t that the same as Salofalk (which I think actually made me worse!?) New? They said it probably wasn’t around when I last saw the doctor. I checked the prices at the pharmacy and 1 month supply of Prednisone is R$33 ($15) and Mesalazine is R$250 ($113). Big difference when you know what works and what doesn’t! I told the docs that I have done my years of experimenting and I know what I need to get better but they refuse to give me my solution – they said it is too dangerous! This now puts me in the vicious cycle of stress because I know there is my “temporary” solution just there… so close … almost in reach at the pharmacy but I can’t get it!

I have figured it out – laboratories! Yup – both doctors prescribed me the exact same medication/brand/laboratory. So instead of helping me to help myself, I am caught in this money making web. So if you live in Brazil and you see a tall blonde girl pushing everyone out of the way to get to the bathroom, please let me go ahead of you because if doctors can’t help me then maybe you can…

So what do I do? Fly to Australia, Canada or the UK to get Prednisone… I guess I will have too … but how would I survive the flight with the seatbelt sign turned on is beyond me :(

I know I shouldn’t be dependent on Prednisone but I am not a beginner at this disease and Brazil has some of the best doctors in the world (and trains the most doctors in the world).

Shame Prednisone is so cheap – if it was expensive, they would give it to me…

Ask Adam:

“Hi Adam,
Curious- any results on Mesalazine and if it has worked for anyone?

Something you may want to add as part of your next survey – I am curious if anyone finds there is a psychological connecting relating to urgency? I find if I know I can’t get to a bathroom I am ok or semi-ok, when I get closer to one the urgency picks up or I can be totally ok and then put the key in my front door and then it is a few moments of will I or won’t I make it…”

written by Sally M

submitted in the colitis venting area

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Hey Sally,

Thanks so much for sharing, and especially for keeping your funny side alive even through a flare up.  AND, congrats to you and all the travel you’re getting under your belt!  So as for the mesalazine…Great question once again, and yes indeed there are tons of different ideas/results with regards to that class of medication.  As  you may have learned, Mesalazine is within the 5-ASA class of drugs, and there’s actually several different medications that fit that bill.  What you should do is go and read through this page from wikipedia about mesalazine: http://en.wikipedia.org/wiki/Mesalazine.

You’ll see that there’s quite a few meds (including salofalk) which are under that 5-ASA group.

If you want to read some actual reviews, you can go to the ASACOL reviews page for some detailed reviews of that particular medicaiton too.  Here’s the page:  http://www.ihaveuc.com/asacol-reviews/

AND, about the urgency idea.  You are right on with your thinking….(I think).  Survey would be great on that and I’ll see what I can do about getting it into the survey mix.  Would be interesting if others had the same deal as you and me.

Best to you Sally.  I’m kinda shocked that the docs wouldn’t throw a prednisone prescription your way since its the most common band aid to flare ups from western med docs.  Please keep us posted on how things go.

You’ll be back in remission soon, keep your head up Sally:)

Adam





5 Responses to “DENIED Prednisone”

  1. JoannaMay 18, 2014 at 10:34 pm #

    Hey Sally,

    I loved reading your story, sorry you are going through this, but to do it with determination and humour is amazing!

    I was on Mesalazine only on my second bout (after 3 years remission) and to be honest should have continued on that between flares to stop this second bout coming on. They put me back on that alone (when a combination of Mesalazine and Prednisolone worked so well last time) – I think because of the side effects and what Pred actually does to the healthy bits of your body. But for me Mesalazine alone does not stop a flare up so I am currently on both – tablets and suppositories – 17 tables a day, reducing. This combined with Adams diet seem to be making me much better. Not there yet but MUCH better.

    Regarding the urgency.. YES – I went shopping once and got so anxious about where the bathrooms were that I was certain I was going to have an accident. When the assistant showed me where they were I suddenly didn’t even need the bathroom!

    I defiantly have had times when it’s not psychological and it’s definitely a physical urgency BUT I am sure anxiety creeps in and doesn’t help the situation at other times too.

    I hope you get your meds and the condition under control xx

    • RamonaMay 18, 2014 at 11:55 pm #

      Sometimes the post on this site overwhelm me. I have had uc since the sixth grade And I am 54 I can’t offer advice because I am not old or wise enough. I have a pouch now.
      Life isn’t easy now but i do I know it would have been different without uc. I don’t over exudate but I do respect that it could always have been worse. Find your balance and know I care.

  2. TarynMay 18, 2014 at 10:43 pm #

    Dear Sally,
    I’ve had UC for 12 years now, the first few years were a nightmare, taking mesalazine 1g a day and every now and then on prednisone with a doctor telling me I would need to go on Immunosupressants. As I am a vet I was a bit scared of them.
    Then I changes doctors and he put me on 3 grams a day of mesalazine. Since I’ve been with him I’ve had very few flare ups, I was two years with no symptoms and when the flareups come they’re not too bad, the worst med I’ve had is clipper which is a steroid that acts only in the gut. When I’ve asked my dr about being on 3g forever he’s tokd me that mesalazine works as a potent antinflammatory and offers protection for cancer too.
    I hope this helps.
    Congratulations Adam for your work! I love it!

  3. AdrianMay 19, 2014 at 4:29 am #

    Prendisone has always worked well for me too.
    My thoughts are, get some adult diapers, there just embarrassing, you’ll live through it and laugh latter!
    Get what works as soon as you can. No sense in suffering

  4. CindyMay 19, 2014 at 4:41 am #

    Hey Sally,
    Loved your post! I can relate to you on sooooo many levels!!
    I have been diagnosed with UC for 3 Years & A bit!! Never have been in remission YET!
    The only thing that has been working for me has been Prednisone & Mesalazine and now lately the Mesalazine has stopped working! Prednisone gets me through the day, but I get very bad Joint Pain! (Sometimes to the point I cant walk!)
    I have had reactions to every drug my doctors had tried me on! Ending up in Emergency!
    I am starting IV infusions next week! “Remicade” I am so excited about Remission
    I work for an Airline too…so I feel your pain about flying & Urgency has taken over my life!
    I hope you get your Prednisone! I can’t wait to get off it! ;)
    Cindy, Canada.

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