Source
r/UlcerativeColitis•
ab355

Can anyone share their experiences?

Hi guys! I'm new here and i'm just starting to try to understand my condition & had a few questions! I've just started seeing my 3rd GI doc in the past 3 years. Doc #1 said all my symptoms were because of my birth control and i was fine (it wasn't and i'm). Doc #2 gave me mesalamine (Lialda) but never told me I had a diagnosis and never told me to follow up so I haven't been back in 2 years. (I found out last month by looking at medical records that she diagnosed me with Ulcerative Proctitis). I've been on mesalamine 1.2g 2 tabs daily for 2 years with no results. My new GI said "the dose you're on is kind of like pissing in the ocean" so he already doubled it to 4 a day & gave me a prednisone script but said not to start it yet (waiting for test results). So my first question is if any of you have had experience with prednisone and could let me know how bad the side effects are (it looks like the script i have is for 10mg 3x daily).

I've also for years like even before my GI symptoms started had occasional joint pains that show up in different joints every time and are really painful and the doc said it's probably inflammation related to the UC. Have any of you been able to do anything about the joint pain? I know mesalamine is an NSAID so I can't take advil or aleve and tylenol is basically useless.

Sorry for the long post but any input would be appreciated!!!

Posted Jul 31, 2020, 5:41 AM UTC

1024
bleedingcolon•

Pred is good short term, but it’s absolute fucking hell long term.

Push to change medication if you have to be on roids for longer than a month. It’s not worth ruining your bones, mental health, weight, and sleep cycle over.

7
throwwwwndbrhrbebdeb•

Just wanna say I’m outraged on your behalf about your previous doctors not keeping you in the loop. Omg. Especially because having UC is so tiring and it’s hard to advocate for ourselves!

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ab355OP•

thank you, i was so frustrated and i guess part of it is my fault for not following up when I knew stuff wasn't working but they always just seemed like it wasn't a big deal and they weren't concerned so I felt like I was crazy!

1
throwwwwndbrhrbebdeb•

It’s not your fault! This is so tiring and its not like any of us chose to have this disease.

2
kranki1•

I have proctitis too .. and joint pain etc. Only way I've found to get rid of it is find a meds combo that can keep you from flaring and staying active. Joint pain is like the canary in the coal mine for me .. impending flare incoming!

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ab355OP•

if you don't mind asking, what med combo have you found to work? i know everyone is different but i'm just curious how the GI symptoms and joint pain are handled together

1
kranki1•

I'm on mercaptopurine (6mp) .. relatively small doses. Use Mesalazine enemas when needed also.

The joint pain is a symptom of the flare so if I keep that in check .. no joint pain. Strength training has also helped I think .. particularly with my back.

2
fcdrifter88•

Prednisone is different for everyone, some people here hate it but I love it. It makes me feel normal and healthy and has been the only medication recently to do so. The only side effect I ever got was acne and it was on my back so it never really bothered me. 30mg daily nay not be enough but you'll have to wait and see.

2
doolargh•

This! Prednisolone is awesome. I know it’s killing my bones, ruining my immune system, and throwing just about everything off balance, but it feels amazing!

2
justinadkins09•

I started off on Mesalamine and prednisone, when I ran out of prednisone I felt absolutely terrible, I couldn't eat, I couldn't sleep, the Mesalamine by itself was making me feel just awful until I was out on Humira. Of course there are side effects, but it really helps a lot. I also had back pains for YEARS until I found out about my UC and since I've been on the Mesalamine and humira, my back hasn't hurt whatsoever.

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ab355OP•

If you don't mind me asking, was Humira the first thing you tried after the Mesalamine? I know if the mesalamine doesn't work i'll likely end up on a biologic but i'm curious what the typical first biologic might be that they might try me on

1
darthkarja•

I had good experiences with Prednisone, but after the last time I never want to be on it again. It's not the Prednisones fault, but I appear to have gotten Rheumatoid Arthritis (nothing diagnosed yet) while on the Prednisone, because once I stopped it the joint pain came suddenly, and very hard. I also had the joint pain just going randomly different joints each day. It could be inflammation from the UC you have, or you could have developed another auto immune disease. I would recommend checking with a Rhumatologist about the joint pain. The medications are similar for a lot of these Auto immune diseases. My Rhumatologist just took me off Remicade and put me on Humira, to treat the UC and the arthritis.

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ab355OP•

Yeah my primary care doc told me i might end up having to go to a rheumatologist so i think i'll probably try to do that soon because the joint pain although not terribly frequent is really bad when i do have it

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poncho388•

I want to slap Doc #1 and yell at Doc #2 on your behalf. Doc #3 seems cool so far but keep them on a short leash.

I don't have any experience with the prednisone other than short treatments for asthma. But just wanted to show my support.

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ab355OP•

Haha I appreciate that because that's how i feel too! So far i think this new doc is going to be much better, I got such a better impression from him and he seemed to actually listen to me and care about helping me so i'm optimistic but i'm certainly not letting my guard down quite yet!

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Trying_My_Best_75•

Meslamine is a good drug to help with general issues and to soften to everyday blow but is hey no means the best drug for helping to get healthy. To get out if a flare up (which it sounds like you’re in) you’ll need to talk about biological such a a humira or remicade

2
chowbird•

I’ve been on 20mg for multiple months now and I’m not doing bad with side effects

2
rosamy1994•

I’ve had GI problems my whole life. Colic as a baby, daily severe heartburn and meat intolerance as a kid. It was like food poisoning every time I ate meat, including poultry and fish. Lactose intolerant. Basically my body was begging to be a vegan. I also had eczema and ADHD.

At 15 I started taking Concerta to treat the ADHD. After 6 months my hair started falling out. I lost probably 3/4 of my hair after a year. I started getting tendinitis in multiple joints. In hindsight, the Concerta kick-started my real symptoms. I didn’t have any noticeable GI symptoms yet, so my doctor just chalked the hair loss up to stress.

During college I stopped taking Concerta. After college I started taking Adderall, and all of a sudden I was bleeding into the toilet. Finally things started to make sense. I’ve basically had UC from birth, resulting in eczema, joint pain, hair loss, and brain fog.

Now, under the supervision of two doctors, I’m on oral Lialda, rectal Canasa, budesonide, and lots of anti inflammatory supplements. I have an anti-inflammatory diet that basically boils down to lots of vegetables, lots of protein (I’ve learned over the years that if it smells bad it’ll make me throw up, and if not it’s safe to eat), and a little bit of fruit. No simple carbs. I’m not in remission yet, but my eczema is gone, so I’m hopeful.

2
Throwawaywbcrbc•

Prednisone usually shows improvement very quickly but it cannot be used long term like Mesalazine, it has horrible side effects in the long term like osteoporosis, diabetes, glaucoma etc.

Did the doctor tell you to take Prednisone longterm or did he write any time period?

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ab355OP•

so basically he just said he wanted to do bloodwork and stool tests to judge the inflammation instead of subjecting me to another colonoscopy and since i've never been on prednisone before he said he was giving me a prescription for it and to fill it but not start it yet. The rx itself is for 10mg 3x a day but that's all it says. I imagine once the results come back or when i have my follow up in a few weeks i'll get more detailed instructions if he decides he wants me to start taking it.

1
stan232•

Sorry to hear about your suffering. You will get better in time. You are your own best Dr. I'm 64 years old and was diagnosed with colitis when I was 20. I became 90% healthier when I stopped eating glutin. The hormones and antibiotics in all Meats kill good bacteria in the intestines. Those were contributions. My Core cause of colitis is picking up something over 20 pounds. It Crushes a disc in my back and neck that pinches nerves that goes to my colon. L1 on a chiropractor chart says "Colitis". Everybody's different. I hope you find your core cause and not suffer for 20 years like I did. Medicine free, surgery free and symptom-free for 25 years. I hope this info helps. Get well.

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sonicviewelite•

Are you having GI symptoms for ulcerative Proctisis ? I was first diagnosed with it in 2014, asked to take mesalmine 1.2 GM one tablet twice a day with mesalamine suppository. Took it for a month and went to remission. I stopped the medicine until this July I was out of remission due to too much stress related to mother’s health. I immediately started the same dose and went for colonoscopy, mesalamine suppository put me on remission again in a week. And the colonoscopy results were better than even first time. I am on the same regime will do for a month and probably stop. Overall good health, healthy lifestyle and lot of physical activity helps. I am regular gym guy. I avoid spicy food tho. And now I know extreme stress cause the flaring, so I am learning to calm down not thing too much about future.

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ab355OP•

Yes, I've had diarrhea for about 3-4 years now and I take imodium either daily or every other day to control it which i really hate doing but it's the only thing that helps. I've been taking the mesalamine for 2 years and I don't think anything has changed I've felt no different on it than i did before i started it :(

1
achilleamilli•

I had a similar diagnosis story, doctors kinda suck. I've been on basically all the drugs at this point, personally had a hell of a time with prednisone, but it will get rid of the joint pain fast, so it sounds like the right move here. I struggled with the anxiety it gave me, and moon face isn't fun, but it does work, just start tapering off as soon as you can, and take calcium supplements! Don't be freaked if they decide to go with biologics, I've had nothing but good experiences with both humira and remicade.

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