I am sorry, Joanna. Is there a reason they went with Rinvoq over entyvio or xeljanz? I would certainly ask the nurse on Wednesday....
Glad they figured out what was going on, hopefully they can get both your UC and Lupus symptoms under control ASAP....
My insurance company opted for me to try Imuran before a biologic and it has worked wonders for me. It takes at least 3 months to get a beneficial level to work, so it is slow. There has been some...
My experience was the same- when the max out of pocket was paid my insurance covered everything. Do you have a max dollar covered with your insurance? Your other option is to call your doctor and let...
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....
Fantastic results! Congratulations...
You need a maintenance med for sure. The prednisone is just a band-aid and will not get rid of the disease. It is normal for symptoms to recur as you taper, but this will keep happening without...
I hate the "you look great, I would never know you were sick" line so very much. I don't have any real advice for nausea except to try drinking ginger juice if you can. Just make sure it is diluted...
DBrasco, that was always what my doctor has always said about tapering prednisone. Wait to taper until bleeding is gone. Miki-I would message my doctor for sure if I were you!...
Good grief, poor you! I am glad you are out of that hospital and I sure hope that the plan in place starts to improve things for you ASAP. Are you at a point where if you had to you could make it to...
Oh no! Are you still in the hospital or are you home again? Fingers crossed they find something in all those tests and can treat it quickly....
I agree that it could be your iron levels are low. As a general rule, I drink tea more than coffee as it irritates my colon less. Green tea is my go to when flaring....
I was flaring when I started taking Imuran so my whole gut was a mess. By biggest complaint was that it gave me nausea and I had to increase my dose very slowly to help with that. Are you taking it...
That's great progress! Glad to hear you are doing better....
Salads are totally fine for me, but raw cabbage is a hard no. I struggled with raw cabbage pre-uc, now it is a food I will never eat raw again....
All my scopes but 1 were done in a flare up, but other than feeling super dizzy during the prep I was ok. Honestly, I am sure I was struggling with light headedness before the prep, but it made it...
If I were you and there was an option to see someone else I would. Even if just for a second opinion....
My current GI says 5 years if you have been in remission for those years. For his patients who flare frequently he scopes every two. My previous doctor scoped every 2 years. I was diagnosed in 2013...
Those are the best days! Congratulations and hope the trend continues....
I found that when my periods are heavy I have an uptick in GI symptoms. For me, the worst part of my cycle is during ovulation. I am prone to ovarian cysts in my left ovary and I am convinced that...
I llHi Joanna, I would love to say welcome back but flaring isn’t very welcome. I also have horribly heavy periods and have had luck with progesterone. You should try a bio identical cream and see if...
Sounds like you are really struggling. Have you had any luck with retention enemas? I would try the steroid ones and see if that would help things calm down. I have always had good luck with those....
I have major photosensitivity when I am flaring, but I have always had terribly fussy skin. I get PMLE if my UC is out of control. Now I have to watch my sun exposure since I take aza, due to the...
Biopsies will be the deciding factor in terms of diagnosis. My doctor said the only major difference in treating one vs the other is if you have surgery, otherwise treatments are pretty much the same....
Hoping this is the start of a new trend for you!...
That's fantastic that you have had such a great outcome!...
Hope the improvement continues. Slow and steady can be frustrating especially after everything you have been going through....
Oh boy, that double diagnosis stinks. My husband took lexapro for a while and was super sensitive about coming off of it. He was on it for a year or so, also at 5 mg. He had a lot of nausea and...
So glad this was such a great option for you. Hope the hernia surgery is a success and the stones remain tiny....
This is so true! I have gotten so much from this forum over the years. Don’t know where I would be without it. We had a blizzard for Christmas this year, but thankfully we didn’t lose power and I was...
Cc, I was just about to post the same. I think UBTough was the person here who did these treatments. If I’m not mistaken it was in a Canadian hospital, also using IVIG therapy....
I split up vaccines whenever possible and do the same for my children, it seems to help minimize negative reactions and also helps determine the cause of reactions when they happen. Hope you feel...
I was diagnosed in 2013. Started having symptoms a month or two before I was diagnosed but I k ew what I was experiencing wasn’t “normal” but it took me a few weeks to see a GI and fry a scope. I’m...
Clo, i also used to get a sun rash for t quite some time. Mine started the summer before I was diagnosed with UC and lasted through the first 3 years of my diagnosis. Thankfully it has stopped, not...
Happy Stomaversary for sure! So glad you are still here to tell the tale and that your UC has gone....
I haven't been on a flight longer than 8 hours since I developed UC, but I found that bringing my own food on the plane was a great option. I also requested a gluten and dairy free meal from the...
Im willing to bet pred is a huge part of your elevated WBC. Whenever I take pred mine are crazy high, my MPV is all out of whack, and I have lots of irregular platelet sizes too. Pred is a wonder...
Not me, but my paternal grandfather had all kinds of "unexplained rectal bleeding" any time he quit smoking. He was never officially diagnosed with UC, but always had issues with inflammatory polyps....
Congratulations! Wishing you continued healing!...
I would experiment with it to see how it works for you but for sure, give it a try. My doctor is fine with occasional use of it as long as you don’t have an infection....
I am allergic to sulfites and sometimes the sulfite free formulation Rowasa goes out of stock for months on end. When that happens and I am flaring my only option is the steroid enema. I have used...
The fatigue is real and has always been a challenge for me. I know I am doing better when I don't feel so exhausted. Hopefully the entyvio will kick in and you will start feeling better soon....
I had no issues with Lialda, but when it went generic and I was getting NorthStar brand, my body could not break down the enteric coating. I use Colazal now and it works great. That being said, my...
Is your son taking steroids for his UC right now? If he is, steroid rage is real and it is horrible. I can't imagine what it is like to be on the receiving end of it, but I can tell you that I get...
This post got me thinking about how often I pee, so I counted yesterday and landed at 9. I drink a ton of water although not as much now since I am wearing a mask at work. I have a 22 oz water bottle...
I take it and get regular blood work to check for liver/kidney function as well as to look for signs of blood cancers. I was unable to get off of prednisone without aza so that made it an easier...
My GI gave me his cell phone number at my first appointment with him and said to call him right away if I start to flare. He also checks the portal and writes back wishing a few hours. My previous...
You can, but I opted to get just the new COVID booster because it always knocks me out. I typically wait to get the flu shot until October....
Sounds like good news overall, hopefully you will get more detailed answers on the remaining questions. Happy healing!...
Not seeing blood or mucus is a good thing. Hopefully the frequency issue will resolve as well and you will feel back to normal soon. It is a slow road to recovery and in my experience, not a linear...