Just started prednisone , advice,opinions...

[ontariomom]

After almost 4yrs I am on a treatment plan. Wednesday I started 50 mg of prednisone. I'm tapering down each week until Christmas when I will be off. I am also on methotrexate ad folic acid.

My bowel movements have definitely improved. But I am so tired. I got so much info that I feel lost. Can anyone maybe clear up the info. Like what should I be watching for in regards to side effects? And is this tiredness and general lack go energy normal? I don't have much of an appetite. Normal? Any of this a warning or just my body adjusting? How long til the meds kick in for real? How soon will I know If I have side effects?

Anything else I should know?

 

[Johnnysmom]

My son was on about the same schedule with Prednisone about 2 years ago. He started on October 11 and then his taper ended Dec. 31.

He immediately felt better, he was pretty hungry too. I know from labs that his inflammation markers were normal 6 days after starting Prednisone and his GI commented it was unusual to have such a quick reaction. He took it in the morning with breakfast, otherwise it was hard for him to sleep at night. That didn't start happening until he was on it for about 3 or 4 weeks.

I think the tiredness can be from inflammation or from the methotrexate. My son didn't have a lack of energy he described it as more of a nervous energy, never feeling rested or comfortable.

Prednisone is also sometimes hard on the stomach so some GI's prescribe a PPI (proton pump inhibitor) to take while you are on the prednisone. If you start feeling heartburn I would ask your GI about it. My son also had heart palpitations while on Prednisone. We realized that he was dehydrated and needed some potassium. Not uncommon while taking prednisone.

Otherwise, I would say to give the Prednisone another week or so to start working. You will probably have some minor side effects while taking it, but it should help get the inflammation under control and allow the methotrexate to work. All the side effects should go away once you taper off.

 

[Queeny]

Hi Ontariomom. I've taken prednisone on multiple occasions and I've always found it to give me lots of extra energy and almost a sense of happiness actually. I found myself in a better mood while taking the medication (possibly because of all the new energy). Some side effects I didn't like but always had were hair loss and acne. As far as the low appetite, I experienced the opposite. I was constantly hungry and would gain some weight while on prednisone. I was always on the medication longer than a typical treatment so these negative side effects shouldn't be an issue for you (hair loss, acne). They usually started after being on the medicine for a couple months. The medication should start to kick in after only a few days. There is a long list of different side effects that people experience so I'm sure they differ among people. What you're experiencing sounds pretty typical with this drug so I wouldn't worry. May try to Google the side effects and compare what you're feeling to them. I'm sure they will be listed as very common. Best of Luck!!

 

[DCannon]

I started prednisone 3 weeks ago for a 4 week period. The starting doseage was 40mg and tapering down to 10mg per week. I had the nervous tiredness like my body was on edge but my mind was exhausted, I also had trouble sleeping. It went away once I got down to 30 mg. I found that the 10 mg drop effected my ability to concentrate and made me irritable so I altered the reduction schedule to be a 5mg drop every 3-4 day's and that has helped make me more functional. It is a strange drug and I think most people have different reactions to it.

 

[ontariomom]

Thanks everyone. Been on the Pred for six days. I have issues sleeping but that's not new. I am just a little paranoid I guess. My bm have definitely improved. 2days after starting the Pred I had no more diahreea. So that is good I assume.

I hav some achiness in my chest, worse by the end of the day. I don't know if its just cause I am so nervous about these drugs or just unrelated. Maybe I am waiting for side effects and things just seem worse.

How long before the methotrexate will kick in? Should I feel better? How do I know if its working?

I drop my Pred dosage down next week to 40. Every two weeks I believe it drops.

 

[sandonn]

I've been on prednisone a couple of times and I hate it. It's funny b/c you're the first person I've found on a forum that has symptoms similar to mine from the Prednisone. I'm tired, weak, and not hungry - usually its the complete opposite. I've taken doses of 40mg for 6 weeks at a time in the past with a different doctor.

I just started seeing a new doctor. He put me on 60mg of pred and 6-MP. I wasn't too happy about going back on the Pred b/c of symptoms. He told me the "side effects" I was experiencing were likely from disease and not the Pred. I've only been taking it 5 days and I can't tell an immediate difference. And it doesn't seem to be helping me either. I'm still bleeding.

I'm going to call him on Monday. I'd rather deal w/ a little blood than the way I feel right now.

 

[crohnicaly stinky]

Pred will knock out the inflammation and do wonders for your crohn's symptoms. But while doing so it wreaks havoc on your body. It's a necessary but evil tool for crohn's management and the less that you use it the better, and I don't mean cut your doses it is very important you run the taper as directed, but just hope you can manage with other drugs once your flare is knocked down and you are off the pred. Pred is like a fire hose putting out a house fire, it's no longer burning but the basement is flooded. Along the you may experience memory issues and also become very emotional. from hot tempered to overly sentimental. I wish you all the best.

 

[Samboi]

Each time I take Pred the side effects seen to vary.
I resumed taking it about 2 weeks ago.
This time - insomnia and constipation.
The sweating has just started. Waiting for the acne to arrive.
Only mild heart burn this time - previous times it has been unbearable.
The voracious hunger is also absent so far.
Water retention is also considerably less too.
No uncontrollable rages so far either.

Early days yet.
But inflammation is gone and I feel fabulous.
Good luck with your Pred experience.

 

[sandonn]

So I've been taking 60mg for 3 weeks and its weird how the symptoms have changed/progressed.

For the first week I felt like death. Tired, weak, I couldn't concentrate. I wouldn't go as far as saying I was depressed, but I was definitely off. The second week it all kind of went away and I didn't feel much of anything.

This week I have all the "normal" symptoms. I take them at night b/c I'd rather deal with the symptoms at home than at work. But now I get nervous energy, slight insomnia, crazy sweats about 3 hours after taking them, and crazy hunger pains. I was telling my wife that it feels like a false hunger. My stomach hurts I'm so hungry, but when I try and eat I'm really full... I've been getting weird acne (which I've never had), and I noticed that at night right before I take the prednisone I get very irritable.

As far as my Crohn's, I still don't know if its helping. I'm going to the bathroom less. Probably only going 3-4 times a day, but I still bleed every time I go. The doctor is actually reducing my to 50mg starting tonight.

So here's my medicine list for now.
Lialda - 4 pills a day
Prednisone - 50mg
Mercaptopurine 6-MP - 50mg
Canasa supository - 1 a day
Furrous Sulfate - 325mg 2x a day

 

[kurtflies12]

If you are an athlete be careful.

 

[sandonn]

Actually, I do work out 4-5 days a week. Why does that matter?