I'm sorry your insurance sucks so much. My boyfriend has only ever had one flare and has been on Xeljanz 3 years now. His first flare was bad and had him hospitalized, he got steroids and was put on...
They made me get one during covid. :/ Every 3 or 4 years if I stay healthy would be nice....
That's bizarre. I've been on both nearly the entire time and my GI had zero issues with it. CVS specialty pharmacy had no issues with it. Too bad I can't give you some of mine. I have 3 full bottles...
Good for you for not burning bridges. I don't think I would have been able to hold back on the phone. It usually isn't the best long-term solution for me though. Although part of me always thinks...
I had a similar experience dealing with the corporate office of a nationwide infusion center chain. Susie is right that once they were out of the picture, everything was fine. Moving forward, I could...
It all sounds so complicated. I'm only 39, but good to know there are people here who can help with sharing this info....
Please report those total bitch nurses. Copy and paste what you wrote here and PLEASE send it to the office administrator. I hate nurses because they are almost always incompetent and so many are...
I eat salads often and with no issues. I eat all kinds of raw veggies, nuts, beans, etc. Food never seemed to affect my UC though....
Nicotine patches and the gum absolutely destroyed my sleep. They also both gave me the worst nightmares of my life. NRT was a horrible experience for me. I hope you don't have to take steroids either....
I wasn't responding to you. I was just sharing information....
https://www.crohnscolitisfoundation.org/what-is-ibd/colorectal-cancer The CCFA backs up the recommendation that I listed above: "Patients who have had symptoms for eight years or longer should get a...
Oh ok. Good luck!...
I googled it before responding and I don't think they're right. You shouldn't have any. I can't imagine taking a medicine that made my throat swell up. Good luck....
I mean, you stopped your medicine so I guess I wouldn't expect him to be thrilled you didn't follow his advice. And now you're back on it and feel fine except for some unexplained joint pain, right?...
Could be. How are you now? Have you tried restarting the Pentasa? I'm still ok so far. Still on 6 a day....
Oh, I always checked the bag. I'm so glad I no longer get infusions....
Sorry to hear. Those patches can cause diarrhea sometimes when first starting them (they did for me but it went away after a few days...I was quitting smoking). They could definitely be making you...
Sorry to hear. Are you sure it's okay to take Uceris twice a day? I was only ever told I could take it once daily (9mg pill). I just want you to be safe. At least you have a scope already scheduled...
After you've had UC for 7-8 years, you have to start getting them every 2 years....
That's great to hear! Did your doctor ever get back to you with any recommendations for a treatment plan or did you end up changing any meds?...
Your remicade is at a normal level, but the antibodies aren't good. Do you even want to continue with it after it made your throat swell up?...
Most I've seen were pretty terrible. I found one I liked shortly after diagnosis, and then I moved out of state 9 hours away. Nearly a decade later, I finally found another one I loved, and then...
I don't know, but I personally love Xeljanz as it worked for me when nothing else would other than steroids. I have no side effects and neither does my boyfriend who has been on Xeljanz since early...
I don't have a deductible for my medicines. I've never heard of that before. My medications are just copays....
I flared almost immediately when I tried Cymbalta many years ago. I have UC, but some of my symptoms and other issues (I got it as a smoker, smoking makes me worse, etc.) sound more like Crohn's....
I don't know about Rinvoq, but for Xeljanz, I did not have to get a shingles vaccine before starting. I got one after starting it because I asked for it myself and wanted it, but I was told the...
Mine usually take at least a week because my hospital has to send that one to an outside lab....
Yeah, they were the worst migraines of my life to the point I could barely leave bed for days. I was in too much pain and too nauseous to drive to the ER 40 min away, I live alone and was seriously...
That's super scary. When I took Humira back in late 2019/early 2020, I developed some really scary side effects once they moved me up to weekly injections. I had a very scary lightheaded or almost...
Thanks. Yeah, my doctor said I could taper off pretty quickly, like 1 or 2 pills a week (can't remember). I don't even know if tapering would matter at all for mesalamine or what the point would be...
My Xeljanz copay is zero dollars. I pay nothing for it with their copay assistance program. I don't have a deductible for my meds so I don't know if that would change anything. You can call the...
I've been down to 6 a day now for a week. Still feel fine. Going to stay at 6 for a at least another week though. Just mentally worried because 6 seems so low after being on 12 since 2007!...
If you have a blender, you can make fruit smoothies and add in ground flaxseed, soy milk and protein powder if you want. If you want extra protein, I've read pea protein powder is easy on the gut....
Same here. I feel terrible overall if I don't eat regularly. My boyfriend can go all day long without eating, workout and go hiking, and eat one large meal at night and be fine. I don't know how he...
I had really scary side effects from Humira. Different than yours, but I remember how awful it was. Humira wasn't helping my UC anyway though. It took about 2 weeks after my last injection and then I...
Off topic, but wow--your insurance covers a gym membership?! Thats awesome....
I totally understand. I hope I never need pred again. I hope the Humira works for you again. You can ask for budesonide instead of pred if that works for you. It did for me sometimes, if I caught a...
I hope it works for you. Do you have a GI doctor you can reach out to if you haven't already? You may need a course of steroids to help while waiting for Humira to kick in. It sounds like you're...
Interesting. Thanks for sharing. I read a book called "How to be Sick" several years ago when I was steroid-dependent and having very bad side effects from Humira. It is written by a woman with CFS...
That sounds scary! I'm sorry you had to go through that. I don't think I'd stay with a medicine after that in addition to all the other issues it seems to be causing you. Yeah, that antibody and...
I've also seen studies saying there is no conclusive evidence that NSAIDs cause issues for those of us with UC. Every time I post that here though, people dont seem to like it so I didnt say...
Yeah, no one will ever just offer you anything stronger, ha. I've had to basically beg. Hope you find relief though!...
Have you tried asking for something like Tramadol for the cramps? My old GI gave me some when I was having severe UC pain. It's not as strong as opiates like hydrocodone and less addictive as well,...
Thank you. Yeah, an infection would be preferable. However, if it is a flare, maybe a change in meds will get rid of your side effects, too. I read a few of your posts in your history. I don't have...
Welcome back! I remember seeing you around a lot back in my earlier UC days. Sorry to hear you flared again, but wow, nearly 10 years of remission had to be amazing! What is the plan now? New meds?...
Interesting! Thanks for sharing. Hope you're doing ok....
Remicade only worked for me for 9 weeks, after which I went right back into a major flare, so I can't comment on the side effects but they do sound like antibody side effects to me. Let us know what...
Gritty--Thanks for sharing that info. That's really interesting and I hadn't heard about that. I'll have to check out the links you shared earlier. That jives with what I remember Dr. Fauci...
Yeah, this is the place where I got the scar tissue idea from. Unclear if anyone's doctor had ever said this though. Would be interested in reading if this is actually a thing....
Ok, thanks....