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Steroids not working??

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Ulcerative Colitis
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Posted 10/25/2013 9:54 AM (GMT 0)
Hello everyone,

I was diagnosed with ulcerative proctosigmoidosis in June this year. I have been taking asacol (250mg) three times a day since then. As bad as it sounds following diagnosis i went into denial and thought it was just a once off flare up so was a bit lax with taking the medication. So a few weeks ago i started getting very bad cramps, diarroeha (sp?) and frequent trips to the loo with mucas, not much blood but all the rest of it. I left it a while but when to the GP when the pain was too much who rushed me to hospital. After a full day of monitoring they said i was most likely having a flare up and offered to admit me to give the drugs via IV (my Bp was up and down). Now i hate hospitals so i decided i could manage taking the tablets at home, which i did.

They gave me a 7 day course of steroids (started with a P), 30mg on the first day, 25 the next and so on. It was horrible i had itching, rage, mood swings and nausia (well i had that anyway). Now the course has finished, 3 days later the cramps are already back. I dont have an appointment with my specalist for another 3 weeks and they cant fit me in before that. The Gastro who saw me on the ward was in a big rush, and filled out the perscription with little detail, the pharmacist siad he would give me what he would consider 'normal' for the flare up. Was this the right thing to do?

Im just worried i wont last till the appointment and am after a little advice. Its my first flare up and am finding work difficult with the pain/urgency, but they are fantastic with it all really!

So any words of advice? Please lol??

Posted 10/25/2013 11:26 AM (GMT 0)
From my experience, you need to be seen by someone before 3 weeks. The flare will just get worse and harder to control. I would call your GI and see if they can squeeze you in, if not go to your general dr again or hospital.

On a side note, I was just like you with being lax on medications for the first years after being diagnosed. My only advice is take your meds! I learned the hard way, it will always come back and it gets worse over time when let go.
Posted 10/25/2013 12:05 PM (GMT 0)
A seven day course of Prednisone seems adequate for a case of poison ivy not for a UC flareup.
Depending on the intensity of the flareup my GI would normally prescribe 40mg of Prednisone for 4 weeks and then taper down from there. It could take up to a week before seeing symptoms improving from the steroids.

And yes, the side effects are horrible. At some point they almost seem worse than the flare itself.
Posted 10/25/2013 12:09 PM (GMT 0)
Right, i suppose i better get sorted then! i still have some buscopan (anti spasmodic) and some asacol oral (400mg) so i have started taking what i have left (they said one week but gave me a bit more). I have also taken codrydamol for the pain so that may explain why i can sit down this afternoon.

I thought it was a case of not going away rather than returning so quickly. I had already spoken to the consultant who had moved the appointment forward by a week instead of waiting 4 weeks. Thats the problem with the NHS here in the UK, everything just takes ages!

I do feel very silly now for not taking the meds, i suppose i should have know what was going to happen, i just didnt expect it to be this painful!
Posted 10/25/2013 1:26 PM (GMT 0)
Well, Clueless-Buggsy you've learned two things: you gotta take your meds regardless of whether you are feeling good or bad, and each subsequent flareup of uc can be worse that the ones proceeding it and much harder to treat. Sometimes we need to learn the hard way. Lol, I've had enough stitches, scars, and such over my lifetime to attest to that.

My recommendations:

  • You will likely need to be on some sort of steroid much longer, at least until your symptoms are back under control, and your body has had time to heal properly. Oral prednisone is one option. Steroid enemas are also available and may give you less side effects.
  • 250 mgs of asacol, three times a day does not seem like much, I'd recommend asking for a higher dosage per day. A lot of us take 4,800 mgs, total per day, of it.
  • Consider adding some rectal medications, such as a Rowasa enema, or suppository such as Canasa. Treating from both ends helps to get a flareup under control much more quickly. Which you use depends on how far your uc goes, if you have only proctitis (only effecting your rectum) then the suppository would be enough. The rowasa goes much further for those who have more extensive disease.

You'll have to get the prescriptions mentioned from your GI. Flares can be pure misery, so the quicker you can get treated the better off you are.
Posted 10/25/2013 1:47 PM (GMT 0)
ditto ipoop
Posted 10/26/2013 7:54 AM (GMT 0)
OK so the GP confirmed the course of steroids wasn't enough. So after a lot of consulting he has given me 30mg of the same one (begins with P) for another week. I am continuing with oral and suppository asacol (a total of 2350mg daily) and I have enough to last until my appointment. We agreed if after the 7 days I still needed more steroids I would go back for a check up.

I think I can say I have most defiantly learned the hard way!

Posted 10/26/2013 10:24 AM (GMT 0)
Good advice here already. What steroids are you taking exactly? You must know if you have the packet? 7 days worth is ridiculous, and tapering from 30mg to zero in 7 days is a recipe for failure. Hopefully you can seek a second qualified medical opinion in this. Don't be afraid to shop around.
Posted 10/26/2013 10:28 AM (GMT 0)
its prednisolone.

Unfortunately here in the UK you generally don't get a choice of specialist. The gastro who prescribed the first course I saw in the ER as that's where my GP sent me, not my normal consultant. Whilst he was from the gastro department he may not have specialised in UC type disorders. I am going to speak to the consultant about what happens next time in terms of who I contact to get the right treatment quickly.
Posted 10/26/2013 10:59 AM (GMT 0)
I'm glad to hear you were seen again. If the 30mg doesn't help make sure you go back, as it may need to be increased. Just keep fighting for yourself to be seen and get this flare under control.
Posted 10/26/2013 11:03 AM (GMT 0)
Thank you! I just don't react well to the steroid, I get really angry and emotional, I hope it all settles down soon!
Posted 10/27/2013 3:57 AM (GMT 0)
It seems pretty absurd to me that anyone would prescribe prednisone at such a quick taper of a week. The usual is 40mg for a few weeks then 20mg.. etc until you get to 5mg and the entire process can last two months or more. Anything less would cause a lot of side effects and withdrawal symptoms as your body starts to need the steroids. If you can't get a physical appointment with the specialist, most of the time they will give you meds over the phone too; I would think at least more asacol and rowasa/canasa enemas for sure.

Hope you get out of the flare soon, it certainly is difficult when you have your first big flare. And don't ever stop taking your meds... UC requires maintenance for life in many cases.
Posted 10/27/2013 8:55 AM (GMT 0)
The other thing to note is that prednisolone is more potent and a little different (usually stronger) than prednisone.
Posted 10/27/2013 9:05 AM (GMT 0)
Ok. Thank you everyone. The GP had said to come back in a week for a review so he may lengthen the course.

Just a question about flaring, I had a 'normal' sized meal, no dairy as I am intolerant, and 10 min later was in agony. I read 5 small meals may be better than trying to have 3 normal ones, is that about right?
Posted 10/27/2013 12:36 PM (GMT 0)
in regards to your last question about the food, in my opinion the less you put in at one time, the less you'll put out. maybe a "normal" size meal is too heavy on your stomach. im not 100% sure my "less you eat less you go" logic is true, as all i ate yesterday was 2 small pieces of sushi and a couple sips of soup broth and i had about 20 bm's.
Posted 11/7/2013 9:09 PM (GMT 0)
Hello everyone.

So after another course of steroids the pain came back (well half way through the 2 week course). The GP didn't want to put me on them again as they don't get rid of the pain, and as there is signs of inflammation showing in my blood they have moved me specialist appointment till wed.

My question is that with all of the pain killers and steroids having a constipatory effect I am very bunged up. In fact the only real symptoms I have atm is crippling pain and nausea. Could this be something else entirely? Do you get flare ups without the bleeding? Im so confused and fed up of being in pain!

Help??

 

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