Bloodwork to check antibodies to Remicade- insurance won't cover it?

Congratulations on the Remicade antibodies blood work results.

What's with the "undiagnosed low blood oxygen saturation condition"??

If it hasn't been Dx'd what makes you think you have it? What "proofs" or indicators do you have that you have this "condition"? How low is the undiagnosed blood saturation level?

CrohnieToo- Thanks much for they reply. I honestly have a ton of health problems with tons of doctors and none of them have a clue as to what is wrong with me. That's why I really like when other people in the Crohn's community ask questions/give opnions on certain things. Much more likely to find some answers.

I was on Remicade briefly from 2009-2010, but had to immedaitely go off it when we found my thyroid cancer. Now that the Humira has not worked, we were hoping that I would be able to go back on the Remicade.

The low Sp02 rates are a complete mystery to everyone at the moment, though I am in the process of being referred to a pulmonologist. It was absolutely crazy what happened. I had two doctors appointments on the same day and both checked my vitals. At both times my Sp02 rates were 80 and dropping to 78. We tried several different Sp02 readers. The first vital check I figured was just an equipment malfunction. In my entire life, I had never had any rates lower than 98. I was completely baffled.

Immedaitely I was sent to the ER and my rates were still the same. Couldn't figure it out, admitted to the hospital. X-rays showed something going on in my chest/lungs. After lots of misdiagnoses, they believed it might be either thymus hyperplasia or myasenthia gravis. Ultimately, after going home and having further testing, it was determined that I DO have thymus hyperplasia but I also have two lymphnodes/masses on the lungs. All of this all seems important, but has actually up to this point been determined as irrelevant.

Thymus hyperplasia does not cause low oxygen sat levels. Nor could the modes around the lungs. So despite the whole ER/hospital stay, the low Sp02 rates were incidental findings. Because I have so many health problems, it is believed that I have physically just adjusted my body to having the low numbers. I don't notice it. At any time, my Sp02 can read 78 but it can also read 90. The number is all over the place. By trying different reading methods, they were able to diffinitively say that it is my rates that are off, not the equipment or an inability to read the rates due to my body for whatever reason.

Additionally, I do have the random autonomic dysfunction symptoms as well. We are in the process of testing for answers to this. Symptoms here include: severe sweating, resting heart rate of 170, fatigue, etc. It's hard to say if the low bloog oxygen sat levels could be related in anyway but my guess is that it is involved in some way. It really is difficult to say.


Hope that wasn't too long! I am more than happy to add to this. I've actually been wanting to make a nice, long post on here about everything I'm going through and if anyone has any ideas or thoughts but as my history is quite long and complicated, I do not look forward to such a tedious and tiresome task.

Thank you! :)

I have COPD as well as Crohn's. When my Crohn's began an active streak roughly 10 years or so ago my gastro and I discussed and agreed upon Remicade. The day before my first infusion appointment I read that a clinical trial of Remicade to treat COPD has been ended early. I called the company and asked why but they just told me to ask my gastro. Instead I called the infusion center and cancelled the Remicade infusion.

That clinical trial had been discontinued early due to serious side and unintended undesirable effects on COPD. Remicade (and I believe, Humira) are contraindicated in any one w/COPD (and I would assume other lung problems as well).

CrohnieToo:

I have COPD as well as Crohn's-Colitis as well. I have just never mentioned it till now to be honest. I have a condition called Vanishing Lung Syndrome - Started when I was around 14 years old.

I took Remicade for two years recently - For me I noticed an eventual improvement in lung function. That being said I was terribly, terribly nervous about the whole thing, especially as I also took Methotrexate at the same time when I first started. Both together caused major issues with lung function, so I stopped the Methotrexate - Remicade on it's own going forward made an improvement.

Perhaps I was just lucky about the whole thing.

CrohnieToo- I seriously have to thank you on this information regarding lung issues and Remicade. This is the first I have ever heard of it and will ask my GI about it ASAP. Thanks so much!

asc- That information is interesting. We are in the process of trying to appeal the decision and I am optimistic about it, but your info is very good to know. As I am on SSI and have no income other than my SS, that price for the testing would be much more accepable than $2500. Thank you!

Big thanks for that number! I'll take a look at that avenue if I need it. Thanks, I really appreciate it!