Starting Pred soon-- any advice?

[Catharine]

Hi All-- newly diagnosed with crohns and my GI wants to start me on prednisone followed by imuran.

I have never had any pain from my crohns, its always just been diarrhoea and my day-to-day life was very livable. . so I was surprised when she said there was a lot of inflammation that would need to be handled through prednisone.

Her recommendation is 40mg for 3 months (or however long it takes for the imuran to kick in I suppose). Any idea how they make the decision to start tapering?

The weight gain is not something i'm particularly worried about as I could stand to gain 10 pounds or so, its more the moon face and the physiological side effects like mood swings that have me a little worried. I guess i'll have to wait and see what side effects I encounter, but I was wondering if there's anything I can do to help with the side effects? Some have told me to drinks loads of water and others have told me to try and be conservative with it.

All suggestions and advice are welcomed!

 

[DJW]

Hi Catharine.

Its been a long time since I was on prednisone. I did get the moon face. It went away after I tapered off. I don't recall mood swings - I do remember how great I felt.

I'm very happy to hear the doctor is taking the inflammation seriously.

 

[Catharine]

I hope I'm like you and avoid the mood swings! I am a little vain, so the moon face is a little spooky to me.. but i'm sure in the long run, it will all be forgotten about once i'm better.

 

[alex_chris]

Her recommendation is 40mg for 3 months (or however long it takes for the imuran to kick in I suppose). Any idea how they make the decision to start tapering?

Hey there again.

The usual process is you take pred for some time (actually less than 3 months) and start tapering it off when you generally feel really good (that is no symptoms or virtually no symptoms) plus your blood tests does not show any inflammation. For me that always went quite fast, also because I personally did not want to stay on corticosteroids long. So I tapered after 3-4 weeks (reduced by 5mg per every 5 days). It all depends on the person and the situation.

Of course as you are only starting with imuran now, it makes sense to do a probably 6-7 weeks course of 40mg and then taper down over the next 6-7 weeks (so 3 months in total). Have I asked before how much imuran your starting dosage was? Just make sure that the maintenance dosage is 2-2.5mg per kg bodyweight. Several studies (and at least in my case from personal experience) showed that too low dosages means the effectiveness as a long-term med of azathioprine (imuran is the brand name) goes way down.

The weight gain is not something i'm particularly worried about as I could stand to gain 10 pounds or so, its more the moon face and the physiological side effects like mood swings that have me a little worried. I guess i'll have to wait and see what side effects I encounter, but I was wondering if there's anything I can do to help with the side effects? Some have told me to drinks loads of water and others have told me to try and be conservative with it.

The weight gain is sometimes just "fake" in the sense that is liquid/water that accumulates in your tissue. I had the moon face and it looked really awkward as in REALLY awkward. I was otherwise lucky, no mood swings, no sleepness nights, no restless legs etc. Drinking a lot of liquids is definitely a good suggestion - not just for cortison, but generally.

One more thing, as you haven't started with pred yet, did your doc tell you about the alternatives (budesonide (also called Entocort) which is a newer steroid which for Crohn's can help nearly in a similar way than pred, but has fewer side effects; although it depends on where your crohn's is located)?

Well, good luck and I hope your inflammation goes away (even though you say you barely notice it, it's absolutely right to get that under control).

 

[Catharine]

Hey again- Thanks so much for all your help so far. You have made me feel so much better in the past day through your responses, plus I feel much more informed.

The Entorcort is not an option for me unfortunately because the inflammation is also in my colon. It was one of the first things I asked about when discussing my options. If i'm not mistaken, I think my GI wanted to keep me on the 40mg dosage until 3 months and THEN start tappering.... perhaps that's something I need to discuss more fully with her in my next appointment. I haven't actually started the steroids yet, but plan to get the prescription from her during my next visit in a few weeks time.

As for the imuran, we haven't discussed dosage yet-- but i'll certainly keep that in mind to broach with her when we do get into those details.

 

[alex_chris]

Hey again- Thanks so much for all your help so far. You have made me feel so much better in the past day through your responses, plus I feel much more informed.

You are welcome. If you have the time, also check out old threads others have started. It usually helps to just read about things discussed from several different angles to get a good overview.

P.S. It's good you only have diarrhea and not many other problems, which means you hopefully can quite easily get things under control and manage it from there.

 

[Catharine]

I will definately continue my research, starting with a read through of some stories on this forum.

One last question I have-- is surgery something that will be inevitable for me do you think? or is the whole point of starting the pred an effort to avoid surgery. Part of me wants to just opt for the surgery if its looming in my future anyways... but I suppose its better to avoid it if possible

 

[alex_chris]

I will definately continue my research, starting with a read through of some stories on this forum.

One last question I have-- is surgery something that will be inevitable for me do you think? or is the whole point of starting the pred an effort to avoid surgery. Part of me wants to just opt for the surgery if its looming in my future anyways... but I suppose its better to avoid it if possible

No, surgery is of course not inevitable, thankfully Crohn's is much better understood than in the past. The problem why so many people have had surgery is that in the past there were just no effective drugs and generally doctors also didn't quite understand the whole disease. There are basically two reasons why someone would opt for surgery, a. there are strictures/stenosis (basically narrowings in your smaller intestine which happen due to scaring from inflammation) and they cause all kinds of discomfort and pain or even blockages - in a surgery they are removed or b. Some more severe cases have fistulas which are tissue strings that are caused by inflammation build up in or around your intestine. In any event, surgery is always a remedy that comes pretty much then when things have gone wrong (for instance in my case I had three scrictures from years of virtually untreated inflammation that were quite painful). I understand you are generally doing ok, and if you manage your Crohn's well there is no reason for surgery ever.

Also, when you read stuff about surgery you need to differentiate, there are those who really are hard hit by crohn's or UC and those who got some problems, but very localized. If your doc didn't say anything about any narrowings or other problems at this time, I would not worry about surgery. While I had surgery 11 years ago, I am doing well now and am pretty confident there won't be any surgery any more ever.

 

[Catharine]

If your doc didn't say anything about any narrowings or other problems at this time, I would not worry about surgery. .

My GI actually did see some narrowing in the opening leading into the small bowel. She wasn't able to get in with a scope.. so I think that's probably why she wanted to start me on the pred right away.

 

[alex_chris]

My GI actually did see some narrowing in the opening leading into the small bowel. She wasn't able to get in with a scope.. so I think that's probably why she wanted to start me on the pred right away.

Even so, don't worry about that narrowing (if there really is one, sometimes it's just swelling from inflammation) now. I hope the steroids work and imuran kicks in and works for you, which would mean no more diarrhea and no more inflammation.

You mentioned at some point above you actually would not mind adding 10 pounds (if I read that right), if you got issues with underweight due to the diarrhea, you could also ask your doc about those liquid medical nutrition bottles (just make sure you take a neutral flavor as the ones with flavor are usually much too sweet...). Keeping a healthy diet/nutrition intake is important, as the inflammation and diarrhea means that your intestine doesn't take in all the calories you eat and all the nutritions, vitamins etc. it would usually take in if everything was alright.

 

[VangoghBot]

Good luck! I had better results with budesonide, less side effects- but everyone is different!

 

[Susan2]

I took Prednisolone, in varying dosages, for 25 years and didn't seem to have the extreme side effects that others have experienced. Rounder face, yes, but as I had become very thin beforehand I probably looked better while on the Prednisolone. In fact, once I stopped, people commented on how gaunt my face looked.

 

[DJW]

As previously mentioned. The reason for all my surgery was because non of the drugs at the time worked for me. I'm now on Imuran and remicade. I wonder how different life would have been if those drugs were on the market when I was diagnosed.

 

[Justanothercp]

Katharine,
Sorry your having to go through all this. 40mg for 3 mo. seems like a lot to me. Especially if it's not urgent enough that you can wait a few weeks before starting on them. Maybe you can talk to MD about a lower dose (help avoid side effects). I have taken prednisone in the past, I believe it was 20mg. It made me feel a lot better, but I couldn't get off and ended up having surgery. That was 12 years ago. Surgery made me feel way better, yet I still have to take Budesinide, Lialda, Remicade and Omeprazole.
I didn't have moon face or mood swings (although my husband may argue that). But I do remember feeling really amped up like I was on speed/uppers, that was a little unnerving.
Surgery isn't imminent, but statistically probable. If it gets to that point, you'll feel much better after.
Keep us posted on how things are going.

 

[Catharine]

Hey-- thanks for all the replies..

Katharine,
Sorry your having to go through all this. 40mg for 3 mo. seems like a lot to me. Especially if it's not urgent enough that you can wait a few weeks before starting on them. Maybe you can talk to MD about a lower dose (help avoid side effects).

I agree, I was not expecting my GI to put me on such a high does.. and for 3 months! seems excessive. The holding off for a few weeks was my idea though, if it were up to her i'd have started them last week. I'll definately check to see if the budesinide is an option.

 

[alex_chris]

Hi Catharine, how is the pred working? I hope you are doing better now!

 

[Catharine]

Hey Alex-- so a bit of a story on this..

It took me a while to finally make up my mind about taking the prednisone, but last week I finally picked up my prescription and was ready to begin the process of getting better. That afternoon however, after picking up my prescription I get a phone call from my GI who tells me she got some tests come back and it turns out I was positive for C. Diff (a gut bacteria that can cause flu like symptoms including diarrhoea, abdominal pain, fever, etc.). She said that taking steroids right now would be the worse possible thing I could do, given that they would weaken my immune system and make it near impossible to clear up the C. Diff.

As a result, she's put me on a 2-week course of antibiotics to clear up the c.diff and has asked that I postpone the pred until the infection is gone.

So yeah... haha, that's the latest! I keep wondering if maybe this crohns diagnosis is all just a bad dream and it was just c.diff the whole time.. but I know that not to be true

It is possible however that the c.diff has worsened my symptoms! I'm really hoping that i'll come around once the antibiotics have done their job.

 

[alex_chris]

When things go bad, chances are that the go really, really bad...

Sorry to hear you got an infection as well now and can't start with pred, but well, one step at a time.

Hope you are otherwise doing somewhat ok with symptoms etc. If you can't start meds, one way to see to decrease inflammation is always to try one of the diets suggested on this forum or to even think about exclusive enteral nutrition for a few weeks (basically using liquid nutrition for some time).

Cheers,
Alex

 

[UnXmas]

Hi, I hope the infection is cured soon, and that the prednisone will be effective when you can have it.

I found I had no side effects from prednisone, even at a high dose... at first! The side effects accumulated over time (some over weeks, some appearing only after a few months).

It actually boosted my mood, in a fake, euphoric kind of way, and gave me tons of physical energy. But the worst problem was this combined side effect of insomnia and restlessness and boredom. There were so many hours in the day and I could settle to nothing. It was horrible, and I'm still a little anxious even now about not being able to sleep properly. I know that sounds a bit weird, for restiveness to be such a big problem, but I found it awful. But my doctor tried to help, we tried different sleep meds and eventually tried Amitriptyline. This med allowed me to sleep, and somehow fixed my mood (it's also used as an antidepressant). I know it's unlikely that the same med combination will work for others, but I would say that if you keep trying to find medications, and keep asking your doctors when side effects bother you, you may find that there are ways of dealing with the side effects.

I didn't gain weight on prednisone, but I am underweight, so when I got the moon face, it actually made me look healthier, and you may find the same thing.

 

[UnXmas]

No, surgery is of course not inevitable, thankfully Crohn's is much better understood than in the past. The problem why so many people have had surgery is that in the past there were just no effective drugs and generally doctors also didn't quite understand the whole disease. There are basically two reasons why someone would opt for surgery, a. there are strictures/stenosis (basically narrowings in your smaller intestine which happen due to scaring from inflammation) and they cause all kinds of discomfort and pain or even blockages - in a surgery they are removed or b. Some more severe cases have fistulas which are tissue strings that are caused by inflammation build up in or around your intestine. In any event, surgery is always a remedy that comes pretty much then when things have gone wrong (for instance in my case I had three scrictures from years of virtually untreated inflammation that were quite painful). I understand you are generally doing ok, and if you manage your Crohn's well there is no reason for surgery ever.

Also, when you read stuff about surgery you need to differentiate, there are those who really are hard hit by crohn's or UC and those who got some problems, but very localized. If your doc didn't say anything about any narrowings or other problems at this time, I would not worry about surgery. While I had surgery 11 years ago, I am doing well now and am pretty confident there won't be any surgery any more ever.

Just to look at this from another perspective: I'm young, so I don't think I come under the category of people who were ill when meds were not yet so effective. I've had I think 7 or 8 surgeries (I really have lost count!), though some were minor, and not related to Crohn's. But I feel I am better off for having surgeries. I don't view them as a last resort. It's something that needs to be decided based on individual circumstances - the risks of the surgery, what meds have already been tried, etc. - but with some meds coming with pretty severe side-effects (if used long-term anyway), sometimes I think surgery is the better option.

My ileostomy has given me such massive improvements in my quality of life, improvements that could never have been achieved with medication. I have had some complications that needed to be dealt with, but I still wish I'd had the surgery earlier, rather than trying the more conservative options for so long. It was not a necessary surgery - I wouldn't have died without it - it was done to improve my quality of life.

I have two wonderful wonderful surgeons, and I trust them to help me make the right decision when it comes to surgery. I think this is crucial: we can't be expected to weigh up the pros and cons on our own, we need expert help (and the same goes for choosing medication treatments).

Surgery is not inevitable - you may well not need it, and if you have a preference for keeping it as the last resort or are very uncomfortable with the idea of surgery (which is completely understandable!), that personal preference should be weighed in to the equation too. But if surgery is suggested at some point, I wouldn't necessarily view that as a very terrible thing; in some cases in can achieve more than medication can on its own.

I've also had emergency, middle-of-the-night kind of surgery, which is a whole different thing from planned surgeries, but without that surgery, I would have died, and so I find it's possible to see surgery as something I am grateful for.

 

[Tony H]

Hopefully the pred will work for you Catharine , I have been on and off pred for over 30 years , and no surgery yet (fingers crossed) .

 

[Susan2]

I didn't gain weight on prednisone, but I am underweight, so when I got the moon face, it actually made me look healthier, and you may find the same thing.

This was me, too. And when I eventually stopped taking it, my face fell in and people commented on how ill I was looking!