Diagnosed last week...

[kateel]

Hi all. I'm very new to all of this...
I started out in January having diarrhea. In March, I started with joint pain and erythema nodosum (I had no idea that's what it was, I just thought I hit my shin really hard, but couldn't remember.) I went to my General Practitioner with these seemingly unrelated symptoms. Nonetheless, I was there, so I thought I should mention them all. She quickly started linking them all together and ordered a battery of tests. My sedimentation rate came back at 61, so she referred me to both a rheumatologist and a gastroenterologist. I saw both physicians and ended up having a colonoscopy last week. I was diagnosed with Crohns. The doc wanted me to do one more stool sample and some more blood work to ensure it wasn't something else (infectious colitis, i think he said...) then I go back this Thursday to find out what my treatment plan will be.
I'm super scared/nervous about all of this. I am glad that I've had a week to do some research before starting treatment.
Can anyone share with me what their first course of treatment was? I'm reading a lot about prednisone and the side effects that go along with it. Was anyone started out on Entocort instead (and if so what were the side effects of that?)
Also, how long does it typically take for someone to go into remission after being diagnosed?
Any help anyone can offer would be greatly appreciated! I'm feeling really scared and alone right now...

 

[mom2twogr8tkids]

Everyone's body is different so it's hard to tell how long it will take for you to go in remission. Prednisone is always given to me when I have flare ups. I can't remember the exact name of the medicine I started out on bc it was so long ago..but it was 16 pills a day. It's gonna be trial and error to find the right medicine to fit you. Good Luck!

 

[Molechaser]

Kateel, I'm sorry to hear your story. Try to keep your chin up--you may have some false starts early on, but things will eventually get better.

Prednisone seems to be the most common drug for inducing remission (i.e., getting your symptoms to go away temporarily), but it tends not to be used long-term because of the side effects. Other drugs that aren't good at inducing remission are nonetheless good at maintaining remission, and they tend to be used more after the initial prednisone dose. During both major flares I've had (and during a couple of the smaller ones), prednisone has been the initial drug of choice.

Entocort shows some promise in inducing remission, and it doesn't have quite as many or as severe side effects as prednisone. But it tends to be used a lot more in Europe than in the US. I'm not sure why.

There are a whole range of drugs to try after you go into remission. I've tried Pentasa (16 pills per day, which makes me think that's the drug that mom2twogr8tkids was trying to think of), which didn't do anything for me but seems to help a lot of people. My maintenance therapy ever since finding out the Pentasa didn't work has been 6-MP, which works wonders and doesn't cause me any side effects (although it causes side effects in some people).

As with diets for Crohn's disease, drug treatments tend to vary a lot from one patient to another. What works beautifully for one person may not do anything useful for someone else, or it may cause enough side effects for someone else that it's not worth continuing. But there are a lot of choices, so the odds are high that you'll find something that works. You just have to persevere until you get there.

 

[kateel]

Thank you for this information! It's nice to have some support out there.

I'm really anxious about my appointment on Thursday. I have had a week to deal with the initial shock of the diagnosis and I'm now ready to start on a treatment and try to get myself healthy again. For now, I remain hopeful that this will happen in a somewhat timely manner...

 

[crazycanuck]

Hey there welcome to the forums.

I'll likely echo a lot of what Molechaser has to say here.

As he said Prednisone is generally only used in shorter stints or during big flare ups as a way of getting things under control in a hurry. This can be a common place for some doctors to start off with depending on the severity of symptoms at the time your diagnosed. I'm fairly certain my Aunt started at this point.

There is another family of drugs called the 5-ASA drugs. The most common of this group (after reading through these forums) seem to be Pentasa and Asacol. These are generally very mild drugs. I started with these but they ended up not working and well I moved on.

Next up the chain is the immunosuppresent drugs. These include 6-mp, Imuran (AZA), among others. These are well you guessed it used to suppress specific parts of the immune system within the intestines to prevent it from attacking the intestines. Generally a little more harsh than the 5-ASA family but may be more effective. Was on these and continue to be along with:

Then there are the biologics. Remicade and Humira are the drugs in this family. Generally only tried after other options have all failed or if symptoms are quite severe from onset. Just another step up the medication ladder. Potentially more severe side effects but can be extremely effective. I am on Remicade now along with Imuran and its working like a charm so far.

There are also the steroids. This includes the previously mentioned Prednisone and, as Molechaser stated, Entocort (which I believe is also known as Budesonide). As I said before these are meant to be for short term use to get things under control quickly. Potentially severe side effects from long term use but are proven to be extremely effective in getting symptoms under control.

 

[Snookums]

Hello Kateel,
The only advice I would like to share with you is that it could be a bit of a bumpy ride to sort out effective medication for you, so try to be patient. Unfortunately with a lot of medications they can take a little time to start working, so after initial dose of steroids( quick at calming things down) your long term meds may require some trial and error. As mentioned above what works for some doesnt work for others. All the best for appointment and hope they get onto something for the long term management of your diagnosis. Take care and keep us updated.

 

[lj3]

I too was just dx and started on entocort right away. The good thing about it as compared to prednisone is that it is not systemic like prednisone so it goes directly to the cells in the intestine to reduce inflammation there instead of into your bloodstream reducing inflammation body wide. Because of this the side effects are much more mild but i will have to wait and see how effective it is im still def symptomatic after 2 weeks but given more time i expect to improve.

 

[lola99]

I started out on asacol and antibotics. Then I went onto prednisone 20mg and then I was supposed to wean from the prednisone while taking the entocort that way i didn't flare up. Well I didn't hear my doctor right and started to wean from the prednisone before i started the entocort and my cramps came back. Now im on the entocort and prednisone but have weaned down to 5 mg. I've only been on prednisone for a few months and have gotten cushings syndrome. moon face,buffalo neck/acne/night sweats/peeing at night,etc. The buffalo neck isn't horrible nothing like the "google" pics. Hoping it goes away soon. But i'm feeling alot better my cramps are 90% gone and 90% less painful. I'm also taking a calcium supplement because the steriod causes bone density loss. My doctor told me the entocort would take around 6 weeks for me to feel better. Predisone does have bad side effects but the other options are just as bad if not worse. And prednisone is usually a temporary thing. I hope everything works out for you.

 

[kateel]

Thank you again to all who replied! I am just getting back from my follow up appointment and my doc prescribed the following:
Prednisone (40 mg for 7 days then taper off over 21 days)
Asacol (800mg 3x daily)
Prilosec

I am anxious to get started on these meds, so I can get myself feeling better. My doc says that I will be in remission when I am done with the prednisone. I am hesitant to believe him, as that seems too good to be true, but we'll see.
One more question for everyone...How soon can side effects show up with prednisone? (particularly mood swings?)

 

[Astra]

Hiya Kateel
and welcome

Ok, deep breath
Try not to worry about any side effects, take your meds and hopefully they'll do their magic immediately.
Take each day as it comes, and cross each bridge as you come to them.
I've been on Pred and it healed me nicely, took a year but I'm in remission now.
I have to say tho, it's a bit presumptious of the doc to tell you that you'll be in remission when you've finished Pred. Has he got a crystal ball?
That's not being snide, that's being realistic.
Just go with the flow and see how it pans out, and don't stress about it. I didn't get mood swings, I was dead happy on it!
good luck!
Joan xxx

 

[kateel]

Astra:
thank you!!! For your reply! This is just what I needed to hear. And don't worry, I don't think you're being snide at all. That's exactly what I thought when he told me "you'll be in remission in a month" Now again, I'm new to all of this, but I just thought it was a bit odd that he was so sure of that even before I've started on any meds...

Not sure if it's a bad idea or not, but I've decided that I want to wait until Monday to start the meds. I need a few days to get myself used to the idea of taking these, and I am planning a big party for this weekend and I really don't want to risk having any side effects until that is done.

 

[Astra]

Hiya Kateel

Honestly, you won't get any side effects that quick, it's with long term use of this med that's the problem.
what you will get however is some relief from diarrhea and pain.
Quick tip for ya, take your Pred very early in the morning, about 6am is ideal, this will reduce any insomnia side effects you may encounter.
You may be jittery and wizzy too, this is normal, just go with it, I was sooooooooooooo energised with Pred, I couldn't stop cleaning!
It has amazing ampthetamine (speed) qualities!
I only got the 'moon face' about 5 months in, and that's it really!
Oh, I couldn't stop eating neither, if it wasn't nailed down I'd eat it!
Have a great weekend party
xxxx

 

[Thunderous Finale]

Suberb post from Astra101...reiterate every comment!

Best wishes Mark. x

 

[e13 boy]

Hi all. I'm very new to all of this...
I started out in January having diarrhea. In March, I started with joint pain and erythema nodosum (I had no idea that's what it was, I just thought I hit my shin really hard, but couldn't remember.) I went to my General Practitioner with these seemingly unrelated symptoms. Nonetheless, I was there, so I thought I should mention them all. She quickly started linking them all together and ordered a battery of tests.
Any help anyone can offer would be greatly appreciated! I'm feeling really scared and alone right now...

Hi Kateel,

Sorry to read your news.
One of the major symptoms i had for two decades of suffering with crohn's was erythema nodosum.I only ever met two Dr's who understood what it was & how it was a symptom of Crohn's.It sounds to me your GP has a good understanding(mine was hopeless).
I always found it was a real 'mirror image' of how active the Crohn's was in my gut.
In the 18 months before i underwent right side hemi the front of my shins had deep purple bruises.On my calf i had patches of erythema nodosum.
My Crohn's fluctuated from mild to severe.
The erythema nodosum would be light red patches when mild - and be deep red/purple when severe.
It would only go away fully when i was on steroids(Pred).
3 years ago when i was in hospital(a month before my 2nd resection) the Dr i was under asked my permission to take photos of it.

Thankfully now i am in complete remission.The erythema nodosum is no longer on my legs.

Best Wishes