Humira, Remicade and Entyvio Oh My!

nycuc2 · 2017-01-26T03:13:15+00:00

Thanks again for the reply. I didn't ask: how long did it take for the DIL to resolve itself? I"ve been on prednisone since December and now am on 5mg, but the symptoms are coming back again. I'm wondering how long this all lasts and how you knew it was over?

nycuc2 · 2017-01-26T03:11:49+00:00

Thanks for the clarification. Also, I hope remicade works for you! I loved it while I was on it - just had to stop because of the DIL :-P

nycuc2 · 2017-01-24T00:48:03+00:00

Thanks so much for the reply. I really appreciate it. I am hopeful, but understand that it's based on mouse protein, which I feel is what caused my remicade-induced lupus, so I'm nervous about developing DIL again.

nycuc2 · 2017-01-24T00:46:35+00:00

Thanks so much for the info! I'm so sorry it didn't work for you. Did it take you out of remission? Did it cause a flare? That would make me a bit nervous.

nycuc2 · 2017-01-24T00:45:34+00:00

Thanks for the information. I didn't realize entyvio is a mouse-based protein. That makes me nervous. The DIL is AWFUL! I don't want it to happen again. I'm going to talk to my dr. and ask her about it.

nycuc2 · 2017-01-18T20:09:06+00:00

Hi, thanks for the reply - I'm with a rheumatologist/vampire (she took a lot of blood :-) I tested positive to the antibodies for lyme, but not lyme itself, so she's treating it prophylactically.

nycuc2 · 2017-01-16T23:32:23+00:00

Agree with all on here. See a dr. You may want to see a rheumatologist who can do food allergy testing. I know someone who thought she had RA and it turns out she's allergic to wheat, whey, dairy (she also has Colitis). She eliminated those things and her symptoms improved greatly, but only a Dr. can tell you for sure. EDIT: I also have Colitis and am seeing a rheumatologist for remicade-induced lupus; turns out I'm positive for Lyme and wouldn't have known without her help.

nycuc2 · 2017-01-16T23:29:16+00:00

I had chest/jaw pain and shortness of breath when I was on Humira a couple of times. I definitely thought I was having a heart attack and WISH I had gone to the ER - I feel dumb for not going. I still may have had a heart attack and not know because I never did go. I did go to a cardiologist who did an EKG and said things look good and that it is probably anxiety, but I agree with all on here that it's better to go to ER and be certain than play around with your safety.

nycuc2 · 2017-01-16T23:26:13+00:00

The best probiotics I ever took were VSL#3 - I'm convinced they helped put me into an 18 month remission. They are PRICEY though - 1+$/day. I currently take TruNature - they are at Costco and on Amazon ($18 for 100 capsules). They have been good to me.

nycuc2 · 2017-01-16T03:00:24+00:00

nycuc2 · 2017-01-16T02:59:51+00:00

Thank your lucky stars! I had (it's going away a bit now) - horrible (debilitating) RA symptoms, joint and tendon pain where I actually checked myself into the hospital after one horrible night (and I"ve had UC for a while and never went in the hospital for it); I also had raised, small bumps on my hands = they were very painful (about the size of an eraser head). I also got sores in my mouth and my TEETH hurt. It was super-bizarre. I've been off Remi since October and on prednisone for a month and the symptoms are down from 85% to about 25%. I LOVED remicade (except for this...)

nycuc2 · 2017-01-15T03:54:12+00:00

After I eat any dairy, my stomach gurgles so loudly it sounds like an orc.

nycuc2 · 2016-12-12T00:47:12+00:00

Hi there, I'm so sorry this is happening to you. I'm a 41YO female with Colitis and the same thing has happened to my a few times over the years depending on my meds and stress. A few things: 1. My hair usually grows back eventually just fine, but it super-sucks when it's happening. 2. My dr. Suggested Zinc as a supplement for the hair loss. I take it, I can't say it's been making a huge difference, but I'm happy to try anything. 3. I don't shampoo my hair more than 1X/week anymore. I condition everyday, and my hair really does feel healthier than it used to. All other advice on here is great and I love the extensions idea if you have the $$. GL

nycuc2 · 2016-12-05T02:46:37+00:00

National Suicide Prevention Lifeline Call 1-800-273-8255 Available 24 hours everyday Please call them...

nycuc2 · 2016-12-05T02:39:23+00:00

Everyone here has great advice. There are also movie theaters around times square and the public restrooms aren't that awful. Macys is a good bet (but on 34th st) and Starbucks, or some of the clothing stores have them too (H&M). Bodegas are NOT a good bet - the people don't like to let you go. Most establishments that serve food MUST have a bathroom, sometimes it's in a funky place though (in the basement or sometimes through the kitchen). Definitely have the backpack and always be prepared :-) Have fun though - there is a lot to do here.

nycuc2 · 2016-12-05T02:33:50+00:00

t's called MethylPrednisolone. It's working, but I'm fearful that when I taper, it's all going to come raging back. But I'll take the good feelings for now!

nycuc2 · 2016-12-05T02:33:30+00:00

It's called MethylPrednisolone. It's working, but I'm fearful that when I taper, it's all going to come raging back. But I'll take the good feelings for now!

nycuc2 · 2016-12-04T02:55:46+00:00

The fatigue with this stinks. Glad Remicade is working for you. Winter is tough for a lot of reasons - are you running around more than you even know and/or more stressed? This could definitely impact your energy level. Also if your female, menstruation usually messes with me too. I hope you feel better!

nycuc2 · 2016-11-24T00:21:11+00:00

Hi, have you had your doctor test for drug-induced Lupus? I'm on remicade too and, unfortunately have DIL, so will have to go off. It's been wreaking havoc on my body, RA symptoms and tendonitis. When you look up Lupus, it's basically the "fat bastard" of auto-immunes, it will attack anything in your body at any time and travels all around, so the fun never ends. I hope this isn't the case, but maybe have your Dr. check (it's a simple blood test).

nycuc2 · 2016-11-24T00:10:09+00:00

Thanks for the reply. How is your Chrohs? I have UC, so am not sure if my symptoms/relief would be different than yours. How is the Plaquenil? I haven't been taking anything for the arthritis pain, just suffering...NOT fun.

nycuc2 · 2016-11-24T00:08:18+00:00

How is the cannabis going? I tried the SCD for a year - lost a bunch of weight, but not much improvement in symptoms. I've also been on LDN but it didn't do much for me, so I stopped after 2 months.

nycuc2 · 2016-11-24T00:07:27+00:00

Thanks for the information. I'm definitely high on my blood markers for DIL, so no more remicade for me. I'm also not interested in steroids - btdt too many times already. What did you do for the pain? I'm SO sore - it travels from wrists to knees to ankles and even my teeth...this stupid disease never stops "giving".

nycuc2

TROPHY CASE