Prednisone

Hello Dr. Healing Well, inappropriately my best doctor at the moment.

2nd day not taking mesavant and I did not have diahrrea this morning! Thank you Jon for the 48 hour information. Could be a coincidence, I don’t know. I’m thinking I might take mesavant today because I still have no &$7@“&/ word or prescription from a &@$;/,?, doctor! Then, if I have diarrhea again in the next two days it wasn’t just the prednisone kicking in.

Day 7 on prednisone.
Side effects of pred: dizzy high feeling in the afternoon, needing deep breaths and worried I might pass out for an hour or so. It’s 7:00 am today, just took the pred an hour ago and I already feel numb and dizzy. I also love the feeling of pred. I have never taken recreational drugs or had trouble with substances, but I find myself thinking that when the pred is over I want something else to replace it so that I can live with this feeling. I don’t let my emotions get in the way any more. My presentation was excellent yesterday, even in my afternoon dizzy spell I was ready to step out if needed without worry. I sat and presented for one hour in the day. Nobody noticed there was anything wrong with me. I feel super normal and capable of being organized and productive.

My usual non-prednisone feelings are self loathing and sloth like laziness. Now, I am able to categorize and prioritize stresses in my life: Masters degree, work, family members I’m supporting, politics at work... all without worrying, and without neglecting the dishes!

I wonder if this is how speed makes you feel.

Glad you presentation went well.
Make sure to communicate the potential reaction to the mezavant to your gasteroenteroligist, and ask about trying a sample of a different brand, similar medication.

Worth a shot to see if the pentasa works better than the mezavant does.

You can get a C-Reactive Protein blood test, or get a Calprotectin stool test, and sometimes ESR from a blood test is used for inflammation levels level in a bit more simple, and less invasive way then endoscopy. If you go the endoscopy route, there is of course a colonoscopy and also a flexible-sigmoidoscopy. I like the flex sigs, as the prep is only two fleet enemas (not drinking a gallon of awful tasting liquid, fasting before procedure, etc).

Pentasa 500mg, take 2 tablets 4 times a day. 6:30 am, 12:00 noon, 5 pm, 10 pm. I’ll need to set an alarm.
Salafalk suppositories 1000mg 2 times per day

40 mg of prednisone a day.

I felt pretty spacey today. It will be interesting to see how adding pentasa makes me feel.

I’m also eating different foods today without worrying as much.

Post Edited (Rosiedays) : 9/6/2019 6:31:52 PM (GMT-6)

Side effects: I think prednisone is healing me and that makes me very happy. I think pentasa is making me feel drowsy all day long! Thank goodness it’s the weekend and I’m not driving. I hope I feel more alert on monday

I think you're reading way too much into daily changes. UC is a slow disease, both for getting worse and healing. You need to look a trends on a weekly-ish basis not daily, else you'll drive yourself nuts trying to figure out what changed. Prednisone can work very fast within a few days, however as you'll see with typical UC meds some (the heavy hitters, such as Entyvio) can take up to 6 months to show improvement.

^This. There is no linear progression from flare to healed. It is more akin to a rollercoaster ride, full of surprise and rather dramatic, ups and downs. It's perfectly normal and absolutely frustrating, but common to have a really good day immediately followed by a really bad day. Look for week-to-week progress, as there is just too much day-to-day variation to mean anything.

I can tell you have a lot of anxiety and/or hypochondria from your posts. You are worried about being sleepy or sleeping too much (and other, similar and minor concerns) and calling them side effects of a medication, Pentasa, which few of us have side effects from. You are making your journey toward healing a lot more difficult with all of this anxiety and worry! I know it is easy to say, and harder to follow, but just had to get that out there for you. Call them as I see them

Day 12 on prednisone. My tummy is flat. My sleep is more balanced. I still have that feeling of rational detachment which is good for me especially with some pretty destructive politics going on at my work lately. It would be nice if I can be a little more like this when I’m off the pred too. (Neurons that fire together wire together and all that) . Grateful to start tapering in two days.

Glad your'e doing well and healing. I was a total nutcase on pred (angry about nothing then euphoric, and got almost all of the side effects like bloating, insatiable appetite, insomnia etc), and it sounds like you're not close to that bad and handling pred like a champ!

The overthinking is awful. Today I felt a slight discomfort on my left side, kind of like how my intense for hours pain would start many times over the last few years (except over the last two years I denied to myself I was sick). Now, this slight discomfort that I can’t even detect right now even when I think about it, is making my mind say that the pred worked for a week and now that I’ve tapered from 40 mg to 35 mg it doesn’t work anymore. When I know that when I first was diagnosed with UC It took more than 2 months for the colon to heal.

Just needed to put that down and notice how my mind is making this even harder for me.

Symptoms this week are very little sleep, and hitting a wall of exhaustion in the late afternoons.

Go mark! I appreciate the inspiration.

Found a recipe for a spread with tofu, miso, almond butter, garlic, onions and dill that I’m going to try today on rice cakes. I’m also making a butter chicken sauce (creaminess from almond butter) to eat with rice and cooked veggies layer, and oatmeal and blueberries. Thinking I’ll have a soft food and rice day today.

Prednisone seems to be my friend right now. Yesterday night I indulged in a way that would have made me very sick last month: dal and rice; garlic bread; macaroni and cheese with prawns, beyond meat burger and deep fried onion rings, beer (first beer in months!) all within the space of three hours and no pain. The over eating along with the onion rings would usually make me ill.

I think I still need to remember that if my inflammation is healing, last night might not have helped the process. But i feel like I took a test and passed! Today I tapered down to 30 mg of pred.

I’ve been very tired all week, and awake at 3 am most days. Last night I slept better and feel just amazing from the sleep.

5 minutes later: The prednisone fog just hit me: I did feel alert and amazing about ten minutes ago.

Anyway my rambling over, self awareness is my friend and I appreciate writing it down here .

Thanks for asking Quincy.

I don’t know the location of my UC. Followup appt in November. I don’t think my symptoms were that bad before prednisone. I am taking salafalk suppositories.

I was diagnosed in 2017 by a general surgeon. Symptoms then were bleeding , just blood day and night, and with urgency when I ate. I had a colonoscopy and a sigmoidoscopy 2 months apart and was alert and wake for both so I saw the healing from taking safalolk suppositories inbetween.

My symptoms for the last two years have been fatigue, soft urgent stools or diarrhea in the mornings, very severe pain about 3 times a year (sweating, can’t move, lying in fetal position for hours). No bleeding except for once when I stopped using the suppositories. I don’t think I have suffered like many people do.

I saw a GI for the first time early this year. When I met her she put me on a waiting list for a colonoscopy, and I had the colonoscopy in August. We talked in the hospital when I was sedated so i don’t remember it and I didn’t know what she wanted me to take....the script she gave me was for oral pentasa and prednisone. I have called the office many times and communication is bad. She is on vacation now. My colonoscopy appt followup is not until November.

My council has been strangers online. When I finally talked to my GI on the phone she said she prescribed prednisone because I was actively flaring. I thought my symptoms got worse after I started taking mesavant (which she sent to the pharmacist because of phone messages I had left ) so on the phone she told me that pentasa is better for my location. (I have no idea where anything is) when I called the pharmacist he said that he had a prescription but it is for pentasa enema with oral instructions and he can’t fill it. I called the office every day for a week to fix this, and the pharmacist has sent faxes marked urgent. she has not responded to this day.

So now, after I also harassed the pharmacist for weeks, I have salafalk suppositories, oral pentasa four times a day (I made them retrieve my original script from the hospital ) and prednisone.

I can make an appointment to see my GP, and ask for copies of the colonoscopy results so I can discuss them here in the internet to better understand. They should be typed up by now. Dr problems in Canada.

Thanks Quincy, I will get all my information, and when I do I'll be sure to share here. (Thank you all moderators for your time, this place is a lifesaver and a sanity-saver!!) My GP is very quick to provide me with anything I ask for, and she happens to be in the same office as my GI so that is good.

When I finally see my GI doctor in November I will have a conversation with her, (I don't even know her,) before looking for a new GI. It might be that she was extraordinarily busy when I had my colonoscopy and then had a vacation planned right after. I do know that her receptionist is concerned about me now, and sounds empathetic on the phone, originally this receptionist told me that I was not allowed to talk to the GI. and I felt she was rude. I need to explain to my GI doctor that I need timely followup appointments after hospital procedures, and to find out how often and for what reasons she is willing to have appointments with me. I will need to look into finding someone else to help me if I don't have access to her.