How Long On Prednisone

I didn't notice any weight gain or moon face until probably about the 8th or 9th week.  I've been off it for a couple of weeks now and have lost about 4 of the 10 pounds I gained.  It really did help in getting my flair under control and totally got rid of the joint pain until the other meds kicked in.  I think most everyone here has been on it at one time or another.  And although it's not something you want to be taking for long periods of time, it really seems to do the trick when you're in a bad flair.

Prednisone is best reserved for emergencies, as it is not really safe. It is possible to have lifelong issues with diabetes after being on prednisone for just a few days, so nobody can tell for sure what it will do for your wife. It's like a roll of the dice. In most cases, prednisone can be used for a few days or even weeks without major side effects.

But Entocort is far safer. She's not taking it three times a day, is she? It's supposed to be taken all at once, just once a day. How long has she been on Entocort? If it has been longer than 8 weeks, then it probably won't help. The Pentasa dosage is low for somebody who is in a flare - the best results are seen at 4.8g but on the other hand, Pentasa is not that effective for most people.

Her best chance of effective medication is using Imuran, a biologic, and/or changing her diet to SCD. If she wants to experiment, she can try LDN.

The word "flare" means different things to different people: what are her symptoms?

I just wanted to weigh in and say that when I am on prednisone I start getting side effects almost right away, within the first 5 days for sure. Insomnia starts first, then the crazy eating, moon face, and emotional feelings all kick in during the first week. The other stuff, like cramping, night sweats, and heartburn seems to take a little longer. I don't tolerate it well though. If she is on Entercort then maybe they think prednisone will be too many steriods all at once. If she does well on Entercort that is far easier to be on that prednisone for sure.

John -

It's tough to get through the first couple years after a Crohn's diagnosis. Treatment is often a process of trial and error until the right combo of meds is found. A lot of doctors don't seem to be able to explain this very well to new patients, who are left confused and uncertain about everything from what meds they are taking to how soon they should be feeling better.

When I read your question about side effects of prednisone, my reaction was to think that you are really asking if your wife should be on prednisone.

This is the kind of question you need to take to your wife's GI. Asking here about side effects other's have experienced is fine. Asking for medical advice here is not so good.

We are not doctors. We can make suggestions of things to explore with your doctor but it's not a good idea to think because someone on the board says to try something that that is the right course of treatment for your wife.

If you are dissatisfied with that doctor's care then you need to seek a 2nd opinion ASAP. How long you wait before reaching that point depends on a lot of different factors. If you trust and get along with the doc then I would be upfront with him/her about your frustration and concerns and see what response you get.

It seems to me that your question reflects much of the newbie's frustration in trying to understand the drugs used and the possible treatment options for active CD.

Prednisone is a rescue medication - much like albuterol for asthma. It suppresses inflammation without really healing anything. It has many potentially serious, even life-threatening side effects.

Most people experience almost a high feeling when they first start Pred. This is especially true if it gets rid of pain and boosts them emotionally after they have been feeling bad for a long time. Like other drugs that can make you "high" prednisone is deceptive and that good feeling can come with a heavy price.

So, pred is not to be used lightly. For many years, prednisone and antibiotics (abx) were the only drugs that doctors had to use to treat Crohn's. Some GI's rely a lot on prednisone, others rely on Entocort, when a patient is very sick and needs to get into remission quickly. Entocort is preferred now because it has fewer systemic effects and is generally easier to stop taking. Getting off of prednisone often takes a long time - sometimes months - once it's been used for more than about 2 weeks at a high dose.

Your wife is already on a form of steroid - Entocort. Entocort may take a little longer to work but it has the same effect on a localized level as prednisone. It is generally much safer to use than pred.

I'm not saying your wife doesn't need prednisone. Just that you need to know all the facts and your doctor needs to be the one to make the decision that she is sick enough to warrant getting prednisone.

But if your wife has been in a flare for more than a year of treatment without achieving remission then the current standard of care would have her on additional meds by now. If she has only been in treatment for a couple of months then that is a different matter. It is not unusual for it to take several months - or longer - to get a flare under control, especially in the new patient.

Pentasa may be helpful in sustaining remission but it will not induce remission.

Entocort may induce remission but if she has been that sick for that long most doctors would have put her on additional meds by now.

There are 3 options for the next step of treatment.

1. Antibiotics - flagyl and cipro are commonly used to treat Crohn's. Xifaxan is another new abx that is growing in popularity but insurance co's don't like to cover it yet.

2. Immunomodulators - Mercaptopurine (which includes 6-MP, Azathioprine, Imuran) and Methotrexate are widely used to treat Crohn's. 6-MP is usually tried first unless you are unable to metabolize 6-MP. Also 6-MP is given orally and MTX is usually started as an injection. It takes several months before you know if these drugs are working. Typically, when your wife was started on Entocort, many doctors would also have started her on 6-MP - provided she is not pregnant. You don't mention this so I am assuming she is not pregnant or breastfeeding.

3. Anti-TNF Alpha meds (also called Biologics) - includes Remicade (IV infusion), Humira (injection every other week) and Cimzia (2 injections once a month). These drugs suppress a different part of the immune system than the immunomodulators. Some doctors might have started your wife on one of these meds almost immediately depending on their philosophy of treatment and how sick she was at the time of diagnosis. Generally, if you respond to these meds, you are much better in as little as 1 month. But, once started, these drugs are usually continued on a pretty much permanent basis. They are very expensive (Humira is $1400/month through our insurance) and are much newer than the immunomodulators - so the possible long term effects are not fully known. Remicade has been safely in use for more than 15 years.

If I were in your shoes, I would be seeking a 2nd opinion from a GI who has a lot of experience treating Crohn's patients. You are most likely to find an IBD specialist at a large university medical center or other teaching hospital. Ask your current GI for a recommendation - most doctors have no problem at all sending patients for a 2nd opinion and don't take it personally.

Best wishes,

Patricia

My ankles started swelling after about 2 weeks and I got really bad shin splits, but I felt so good otherwise I didn't care. I did have night sweats, nightmares, mood swings, and minor acne too but like I said, I felt GREAT compared to before. The first time I was on for 8 weeks along with Asacol. However, after I was off the prednisone I started having symptoms again about a month after. I begged my doctor to put me back on and he was really reluctant but did any way for another 8 weeks, and then a few months after that I flared again so I spoke to another doctor in the practice and he prescribed me more. I made that last for 3 months while my doctor took his good old time giving me an answer for a long-term treatment. After all that, my ankles still swell very easily. They never did before that. My face never swelled when I took them though. I wouldn't recommend your wife take them as much as I did. But it is good for almost immediate relief and short term use.