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Ulcerative Colitis
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Posted 4/28/2023 12:11 PM (GMT -5)
Oh I love that... I need to start working that into my vocabulary!
Posted 4/28/2023 2:07 PM (GMT -5)
I have to admit.... I do say that to people when I am very upset.... Well bless your little heart.... How can I explain this to you....

And they sometimes know I am being mean.

The other one is..., You all must not be from around here? That's a bad one..... If you are a southern person you will whip out your ancestry credentials. I smile and say My family has been down here for well over a hundred years.. Yours? ... And you know what..... I'd still say it even if it wasn't true. I do not whip out my mother's family name unless I want to really thunk them on the head.... And if I do whip it out and they don't recognize it I say... Ohhhhhh, bless your little heart, your family is still newbies... LOL.

My Momma and Daddy taught me how to play that nasty game.... Unfortunately my Dad was from New York and that side of me doesn't like those games and goes straight into street brawler mode... Lol .. it amazes even me sometimes... And gives my southern and northern cousins pause. They never know which side is gonna come out to play.

Clo
Posted 4/28/2023 2:33 PM (GMT -5)
LMAO! Well that's not a game I can play. My family has not been around these parts for all that long, and no one here gives two hoots. If I even tried it, I think I would just get puzzled looks. Like... okay, so?
Posted 4/29/2023 2:29 PM (GMT -5)
BG,
How are you doing? Hope you are feeling better.

SN,
I know.... It's just silly. My Mom noticed things like that more than I did. It used to really bother her when we were in a different places and people would ask her if she was related to so and so. My Dad.... Not so much. He believed that family signified different things to different people.. In this, I can be more my Father's child at times--meaning it doesn't matter and it's nobodies business.

Clo
Posted 4/30/2023 6:49 AM (GMT -5)
Hey guys.

Nausea is better. I had been using fresh ginger pieces to make tea but it wasn’t working at all so I bought a CVS brand morning sickness supplement that is high potency ginger oil. I take it after every meal and it has been helping a lot. Definitely recommend it for people who have severe nausea that even zofran doesn’t help. Can’t wait to be off this poison! I can only imagine what my poor stomach looks like now. I read that prednisone reduces mucous secretion in the stomach so that is most likely the cause of all this nausea and stomach pain.

Insomnia is 10/10 bad. My body just doesnt wanna sleep on prednisone. I am going on a supplement ordering spree just trying everything! The only thing that helps is benadryl but it leaves me feeling so bad the next day so I need to find something else. My partner rearranged my entire bedroom (bless his heart haha) to see if a change would help but alas, it did not.

Pooping is currently less than 4 a day. Still have pain and urgency but diarrhea is gone. I can fart freely now thank god and have been farting a lot. My dad installed bidets on my toilets and this has been so helpful with my butt irritation. I wish I had known about this back during my last bad flare.

Still wondering if Rinvoq is doing anything or if its just pred and culturelle helping. It is day 26 on Rinvoq. I will say my acne is now horrible. Not sure if its prednisone or Rinvoq but my face and neck are just a disaster. I remember reading some of you guys having Rinvoq acne so maybe it means it is working?? Haha

I currently feel like my life is in limbo with this. Just so unpredictable and I can’t make any plans for the future. I really hope Rinvoq will work like it has for a lot of you even if I am a slow responder. A pill is so much preferable to my Simponi injections but I will take anything at this point to be in remission.
Posted 5/1/2023 4:30 AM (GMT -5)
10/10 insomnia to me would mean no sleep at all, but since you sound coherent I am guessing you are getting at least a couple hours. At least I am hoping you are getting at least a couple hours. Our bodies can only survive for a few days with zero sleep. I don't have any suggestions for getting more sleep while on pred. It will get better as you taper to the lower dosage.

Good that the rest of your symptoms are better! Hopefully the Rinvoq will take over as you come off pred and you will have a smooth transtition.

btw .. I read somewhere that it's never a good idea to make any big plans while on pred .. that stuff really clouds our judgement and and can make us feel like Superman (or woman) lol You will be down to a sane level in a few weeks and you will have your life back. Hang in there!
Posted 5/10/2023 4:19 AM (GMT -5)
Things are going better here mostly! I got my Rinvoq bloodwork yesterday so waiting to see how that looks. Pooping is 3 or less a day. Farting is insane- often and loud and forceful. Nausea is better from the ginger pills. Pain is still here but less. Insomnia is still bad but I started melatonin a few days ago. I had been averaging 1-2 hours a night for many weeks and some nights no sleep at all so my average sleep was like 7-10 hours a week. It is now 4 hours a night on melatonin which actually helps a lot. I read that prednisone reduces our own melatonin production so its actually necessary to take if you have insomnia on pred. Definitely worth it for me. Im still super exhausted and have no spoons for anything though.

But overall, I have gained most of my weight back and its definitely all fat and some water retention from pred. My belly jiggles like a water bed. I ended up getting moon face the longer I have been on pred and feel so fat and unattractive. I hate seeing myself in the doctors telemedicine visits. I was in a virtual waiting room for 90 minutes looking at myself yesterday because my doctor was so late. But hoping that does away once I am off prednisone because my self esteem is at a 0/10 and now I want to cut my hair into a slimming look! Haha

All in all, I have no idea if Rinvoq is doing anything just because I was in the hospital and so sick most of the time I have been on it. We shall see what happens once I get below 10 mg of prednisone. That will be later in June since my taper is so slow.

Hope you guys are hanging in there!!
Posted 5/10/2023 9:32 AM (GMT -5)
So glad to hear you are doing better. Prednisone—the med we all love to hate!!!!
It does help so much with symptoms but the side effects are horrendous!

Fingers crossed your taper goes well. But I think it will. After all prednisone alone wasn’t getting you this far in symptom management so the rinvoq must be helping! Hang in there. Just starting to think ahead and make plans, even simple ones like a haircut, is another good sign as I believe our degree of symptoms equals to the same degree in depression. (Depression from our disease I mean. I truly believe there’s a very strong correlation and the better we are physically, the better our mental attitude is.
Posted 5/10/2023 3:32 PM (GMT -5)
That's some pretty major improvement UC wise! I cannot sleep on pred either so what you are doing sounds like it is working. Fingers crossed for your taper.
Posted 5/10/2023 5:36 PM (GMT -5)
So glad you are doing better Joanna!
Yes the path to recovery is alway a long one especially after such severe flares. But try to focus on the small improvements.
I hope you continue to get better and that Rinvoq gives you a very long remission! Lifelong remission (the holy grail).
Posted 5/10/2023 5:52 PM (GMT -5)
Walking outside for about atleast 20 min daily, getting some sun, and reducing screen time all I find really help with sleep for me. I have chronic issues with sleep and tried many things. Also, keeping the bed for sleeping only (no smart phone browsing -which iam doing now hehe- or other stimulatory activities) helps alot.
And yes with the moonface i hate that so much too! It almost is the one thing, besides the weight loss, that makes our disease visible. I have a couple of photos from my last stint on pred and entocort last year and I hate looking at them, with the double chin and huge pear shaped face.
But June is close so hopefully by the time summer rolls you will be feeling great again!
Posted 5/10/2023 6:44 PM (GMT -5)
Good to hear you are doing so much better!!
Posted 5/10/2023 11:53 PM (GMT -5)
Glad that things are going better. Crossing my fingers and saying lots of prayers that it continues.

You might want to delay any new hair decisions until after your taper. I always make the worse decisions regarding my hair while in Prednisone. Oh gosh.... I'm remembering... Last time I cut it so short that with the moon face.... I looked like a shiny bowling ball with a hair fringe around it .. the time before it was a perm that broke off most of my hair at 2 inches because of the Prednisone weakening my hair.... Then there was the red hair that turned purple green at the new growth because of the chemicals from Prednisone in my hair.... The rest of my hair was a beautiful golden brown with some Carmel colored low lights. Truly an amazing experience. My hairdresser was so upset that I didn't tell her about all the meds I was on.. plus I absolutely howled when I saw her face after rinsing the color off. LMAO just thinking of it...

Prednisone helps my symptoms but plays havoc with so many other things. It is funny but sad when you can point to pictures and say... Oh this was 40 mg. Of Prednisone daily .. but that is nothing... Wait til we get to the pics of 80! Lol....

Hang in there!
Clo
Posted 5/19/2023 7:37 AM (GMT -5)
Hey guys. My flare is doing better but still not sure if its prednisone working or Rinvoq. I have 11 days left of the 45 mg loading dose and then will drop to a lower dose. Note sure if it will be 30 mg or 15 mg. I assume 30 mg. I will hopefully be off prednisone by the end of June. My current symptoms are very bad gas, upset stomach and now constipation. I am not even pooping daily anymore but I will take constipation over excessive diarrhea ANY day. I haven’t even worn a diaper out of the house in over a week now since my constipation just hit really strong. My acne is very bad and I am trying so many things to help it but think I will just have to suffer until I am off of prednisone. I am just covering myself in hydrocolloid patches all day haha I had some pretty troubling labs come back from my one month bloodwork- prediabetes, poor kidney function, very low wbc, and my lipid panel went up about 100 pts on every marker. Both my pcp and gi said they are 100% med side effects and not anything I am doing. They said everything should improve once I get off prednisone and lower my dose of Rinvoq. I am pretty nervous about the lipid stuff since I don’t want to clog all my arteries either and have a heart attack. I have 3 month bloodwork/stool tests and 6 month bloodwork/stool tests (reoccurring for as long as I take Rinvoq) so everything is tightly monitored. The maintenance dose will depend on my inflammation markers and how my lipid panel, cbc and liver enzymes are doing. I just wish I could take the meds without them doing damage to other organs in my body. Definitely annoying but I am a slave to the meds and have no quality of life otherwise. Hopefully I can get off prednisone and be able to live my life again in remission.

So yeah. Everything is still spotless btw. My house has never looked so clean haha I am delirious most of the time but then go on these cleaning binges for an hour or two. Still deciding on my new living room furniture but I have all the color and fabric swatches for the couch. I also decided the room needs painted so I need to get some samples for that as well.
Posted 5/19/2023 9:06 AM (GMT -5)
I have been diagnosed as severe Pancolitis. I just started infusion Renflexis) and doing another round of prednisone.
Posted 5/19/2023 9:11 AM (GMT -5)
Banana Girl, good to hear you are doing a little better at least. Oh I hear you about wishing you could take meds without doing damage to your organs... that's is what I worry about everytime I swallow a pill after my liver enzymes came back elevated. Where is that magic wand cure I keep waiting for????
Posted 5/19/2023 10:03 AM (GMT -5)
I was also diagnosed with Pancolitis. Got my first infusion (Renlexis) two days ago along and also taking prednisone on a daily basis tapering down every week. Still going at least 15x a day/night. How are you doing?

Post Edited (WayneTX) : 5/19/2023 10:43:00 AM (GMT-8)

Posted 5/19/2023 5:08 PM (GMT -5)
I am doing a lot better ... I feel like I am on the verge of remission but I am stuck at this "on the verge" stage for quite some time now. I am going just in the mornings. Sometimes only once! Sometimes 2 or 3 times. Sometimes solid normal stool... then the next day it's back to slimey/bloody mess. I don't like to complain though when I see what others are going through. 15x day/night, that is rough. And look at poor Banana Girl. I will just keep soldiering on.
Posted 5/20/2023 1:25 PM (GMT -5)
Wayne, I hope things getter better for you soon. I do not want to go back to the diarrhea times. IV steroids are usually the only thing to at least get the diarrhea under control for me. I think I just end up pooping out the pills so maybe that is what happens to you as well. Just no absorption of the medicine. I’ve had to be hospitalized for every flare I have had and always on IV steroids unfortunately.

Serenity Now, yeah the drug makers really need to find a way not to kill us while also treating the disease. I was on 6mp and remicade a long time ago and got into remission fast but my liver enzymes were horribly high. They took me off 6mp and then remicade stopped working as soon as I wasnt taking 6mp. So weird. Seems like the combo was necessary but deadly. I remember they did an mrcp and liver ultrasound because my levels were so bad. What medicine are you on now? Not sure how long ago you updated your signature
Posted 5/20/2023 1:33 PM (GMT -5)
I am just on the Mezavant, 4800 mg, so my signature is still up to date. All we're doing about my liver is just retesting in a couple more months. I guess my doctor was not all that alarmed by the number on my blood test.
Posted 5/20/2023 1:34 PM (GMT -5)
Bacon Girl, are you allowed to continue on the high dose of rinvoq for a bit longer? I'd be reluctant to drop the dose if you're not in remission and still on steroids.
Posted 5/20/2023 2:02 PM (GMT -5)
Serenity Now I have never heard of that drug before. But thats good your doctor keeps up with the tests. Mine is the same. Almost too bloodwork happy for my tastes.

Poopydoop, No I am not. I did ask them since I heard of that on this forum (maybe from your posts) but both my Gi nurse and Rinvoq nurse said that has never been done before. They said the risks outweigh the benefits and based on my bloodwork, they will definitely not keep me on that dose. They did say 2-6 months to fully see benefits so I am almost at 2 months. I havent had a colonoscopy in almost 2 years so idk what my colon looks like at the moment.
Posted 5/20/2023 3:24 PM (GMT -5)
I might be remembering this wrong, but I think Mezavant is similar to what you call "Lialda" in the US?? In any case, it's a type of mesalamine.
Posted 5/21/2023 6:16 AM (GMT -5)
I doubt it has "never' been done before as there are plenty of experimental GIs and the clinical trials will have tested different doses but whatever 🤷🏾‍♀️ I would have thought it makes more sense to try getting off prednisone first. I hope either way things continue to improve!
Posted 5/21/2023 7:24 AM (GMT -5)
Serenity Now ah ok! I took Lialda a while back. Wish I could have tolerated it better.

Poopydoop Yeah I cant remember where you are from but doctors don't extend loading doses here (at least the ones I have seen). You do the loading dose and then go to the maintenance dose and let it work from there. The clinical trials here don't do extended loading doses as far as know and my doctors always follow the rules. But yeah. That is the plan- to get off prednisone and just be on the maintenance dose of Rinvoq. I was on prednisone for every other biologic Ive taken so this doesn’t seem any different for me. My inflammation markers right now are very low so I hope it stays that way. What is your maintenance dose? 30 mg or 15 mg? My nurse said they do the lowest one that works.
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