Can anyone offer any insight? long

Hello,

I am new to the forum, but have been browsing over the threads, and am overwhelmed with the information on here.

My little brother was diagnosed with Crohns about 5 years ago (he is now 27) after wasting away to almost nothing, and almost dying. He has been on prednisone pretty much constantly since, with a few months he was able to be off of it. He has been on and off Remicaid as well. He lost his health insurance, and went for along time with no treatments, care, etc. He has found a Dr. that helped him get on the Remicaid program that provides free Remicaid, but he pays $500 for the infusion. He has had a fissure from his colon to his bladder for almost 5 months now. He was given Remicaid 4 weeks ago, and was due for it again, when he was hospitalized with severe limb/joint/muscle pain, not being able to move, etc. After a week in the hospital, going thru joint swelling and high temperature,  heavy antibiotics for an apparent bladder infection, he was feeling better and released. He was scheduled for another Remicaid treatment today, and 5 minutes into the infusion, his throat swelled, he turned red, and they stopped the infusion and gave him a shot of Benadryl and oxygen, and he was ok in an hour or so. He said that they did not give him Benadryl before the infusion as they usually have in the past. He has an appt. with his GI Dr. on Monday.

My questions are: is is standard procedure to give Benadryl before Remicaid? I have read a few posts on here that mention they have taken it first also.

Does anyone know of any health insurance thru the state of FL, or IL that would help him cover his costs, and get the "good" medical care he needs?

Is it possible to get on disability for Crohn's? He has lost SO much work, and is only employed now because he works for our brother.

Any and all other info anyone can offer would be so appreciated. He is currently in FL living with my brother, but I am trying to get him to IL so I can help with his care as he is depressed on top of all this. Thank you all so much for this wonderful forum. I will certainly keep reading thru posts.

 

To answer...

I was always medicated with benadryl prior to my remicade infusions. Some people don't need it, but most people seem to be premedicated with it.

I don't know about health insurance in Florida, but there is an organization called the Patient Access Network Foundation. They have helped me pay for all of my Remicade and my Humira too. They are AWESOME. I do believe, however, that they are designed for people who "have" insurance, but like my Medicare, the insurance just sucks monkey nuggets. PANF covers what the insurance doesn't. All of it.

If he's getting his Remicade for free through Centocor (the company that makes it), that deal shouldn't break if he moves to Illinois with you. It shouldn't have anything to do with Florida, so it should transfer right along with him if he moves.

There's also Medicaid, which applies if his disease has drastically reduced his income to within the Florida range of qualification. It's a lot of paperwork, but probably worth it if disability/medicare don't work or aren't an option.

Medicare leads me to your next question about receiving disability or SSI. YES, a crohn's patient can most definitely get disability for this disease. There is a ton of paperwork, and it can take a long time, but it can be done. Some people have had a terrible time. Other people, lucky people like me, got it in a matter of 5 weeks. You need to have his doctor willing to back him up, and his crohn's has to be severe enough - but it sounds like the latter shouldn't be a problem. Just find a good doc if he doesn't have one already.

And last but not least - if you DO get him to Illinois, and you're anywhere near St. Louis, I HIGHLY HIGHLY recommend the Washington University School of Medicine doctors in the area and at Barnes Hospital.

Best of luck to you and yours.

Thank you for the replies so far. I will ask him about the B-12 shots, and if he has ever had those. I am not sure where his Crohn's is located at this point? I will ask him and see if he knows. It has been very hard for me to keep good tabs on what has been going on with him, since he is so far away. But my other brother has not been able to really help him much and I need to step in and try to keep tabs on what is going on with the Dr.s etc. Unfortunately, my little bro who is sick, is not very good with keeping good records, or even paying attention to what the Dr.s are doing or why..he just goes with whatever the current doctor says, without asking questions, etc. He isn't losing weight right now, instead, ballooning on he pred. I know he does drink ensure, etc. regularly and am reading that its very easy on the colon.

Patientspiders, thank you SO much for your legal info side. I am going to look into PANF and see if that is an option for him. I am also going to work on him hard for disability. He is afraid he won't be able to work at all on it, and that isn't helping his life outlook much. I would think his Dr. would back him up on that, as they worked hard to get the Remicaid program pushed thru for him quickly and have tried to work with him as much as possible, being uninsured.

I am near Chicago, and he was finally diagnosed at Northwestern U, within 10 minutes of being admitted...when we had spent almost 2 years at other hospitals and Dr's trying to find what was wrong. I will defitinely keep in mind your Dr. recommendations near St. Louis though! Thank you all again, I am feeling like we can get this under control for him.

Graco - I'm so sorry to hear about your brother. I was on remicade for 6+ years and YES, benadryl is standard PRIOR to the infusion. I quit taking it a few years into it because I had never had a reaction and the one time the nurse started the infusion too fast I got a reaction and they quickly gave me i.v. benadryl to stop everything.

As far as disability goes - yes, he can apply for it. I was approved within 6 weeks. I am a severe case. Here's what you need to know - they don't care how bad he feels. They only care in the context of how it causes him to be unable to work. SO - when you fill out the paper work he needs to say all of the things he CAN'T do because of his disease and the meds he has to take. Instead of saying "The prednisone makes me weak and shaky and I feel terrible." He should write, "The prednisone causes me to have tremors that make it impossible for me to cut food with a knife, sign my name with a pen, or drive my car." Get it? It's almost like you have to put exact qualifiers on what he CAN'T do. Say things like "Explosive diarrhea and severe bleeding" and "unable to leave my home because of I MUST be near a toilet at all times." (Of course only say it if those are all true, I'm not saying to lie, I'm just saying do NOT sugar-coat anything) List EVERY negative side effect that he has experienced due to any and all of his meds. His doctor's notes/file also will play a big part- so ask the doc to get on board. Also - any official paperwork from his employer would be helpful. No need to mention that it's your brother - if there is another co-owner have that person write the letter so you can use a different name. For example, I was a school teacher and had received a "disciplinary action" letter from my principal basically reprimanding me and threatening my job because of missing so many days of work. She actually wrote that my absences were causing me to be unable to do my job. It really helped my case because it helped to "prove" that I was too sick to work. If you search the government disability website there is a huge list of criteria that they use to determine whether he will fall in the guidelines of what they consider disabled. You can check it out.

I'm sorry he's going through so much. You are good to help him with all of this.

Thank you all for all your help and thoughts about my brother. I am looking into the mentioned programs, and see if there is a way to help him out. He went to his Dr. today, and they are going to get him on the Humira lowcost/free plan and have decided he is not to get Remicaid again, after his reaction, even though they did not administer the benedryl beforehand. Hopefully this won't take too long, and the Humira will help. He has never gotten that before. Thank you all again for all your help, and I love this forum. You are ALL so open and helpful about such a horrible and private disease. I hope that someday soon, there is a cure found for this disease. I will keep reading and learning.