Hello Gang - New Here!

[Crohn's in LA]

Greetings to my fellow crohn's sufferers.

I am new here, and just wanted to introduce myself before I began to ask any questions.

I was diagnosed with Crohn's @ 9 years old. I've had three surgeries, and have been on a few drugs to treat it. Prednisone, AZASULPAHDINE or something like that when I was 9 or ten, pentasa comes to mind for some reason, and 6MP. I am on 6mp and have been since 1995. Currently I do not seem to respond to it anymore. I will be purchasing HUMIRA ($1,800.00) in a couple of days. I really hope that goes well. If anyone has had a really bad experience w/ HUMIRA I'd like to know. Outside of headaches.

If it doesn't work my GI is thinking more surgery.

I'm glad I found this forum. It was lonely in 1987 when diagnosed. Nobody knew what my condition was, and there was no support. Who would think 21 yrs later I'd finally find support and add'l help.

Again, hello and I look forward to speaking to you all.

 

[Kittee]

Welcome. =) You'll find it very friendly here. I"m just recently diagnosed. (Last week.) LOL

So our experiences are different but I'm sure we can all sympathize with each other. I hope your new treatment works out.

 

[Crohn's in LA]

Kittee,

Thanks. I read your post. Sorry to hear your news.

I know that as time goes on good and bad, you'll find a way of dealing with certain pain. Also preventing certain pain through what your body dislikes etc. That's where I am now. I had a wonderful stint from 1995 to 2001 of being pain free. I really thought it was over for some reason.

 

[Kev]

Hi, Crohn's in LA Welcome to the forum. A couple of folks have posted a diary on their experiences with Humira from day one.. Several other members are either currently using it, or have used it in the past. Think if you read the diaries, you'll get a good understanding of what it can do for you, and some very good info on tricks of how best to take it, store it, or contact info on the Humira hotline and resources available to all patients.
If reading those doesn't answer your questions, you can post them here, or Private Message folks who have 1st hand experience with it. We all try to help each other out here, it's a very friendly and supportive environment.

 

[Crohn's in LA]

Indeed it is a very friendly environment.

Thanks for the info KEV.

 

[Guest]

hi there, and welcome

my first round of ops was in 1986, and like you i felt very alone with it all. its recently recurred, and this time around i feel so different, simply because i've found this forum. so i know exactly what you mean. its good to have you here - hope things settle for you soon.

 

[My Butt Hurts]

Hi C in LA.
I've had nothing but good experiences with Humira.
I just did my 4th injection yesterday, so I've been on it for 6 weeks.
No headache, no nausea, no rash - nothing.
I went from "going" 12 times a day down to 6 times a day with prednisone, then once I was on Humira, on day 6, I started going once or twice a day, and it's been about the same ever since. I feel really great!
Do you not have insurance? My doses only cost $30. (I think for 2.)
Anyways, welcome to the forum and good wishes for your Humira treatments.
Really ice up good. It's a bad sting, but completely gone as in 10 seconds.

 

[vickyoddsocks]

Hello! Welcome!
Hope you find this forum useful!
If Humuria is the same as infliximad (which i have a feeling it is) I've had 18 infusions and they've all been great, ive had no side effects what so ever! Good luck!

 

[Crohn's in LA]

Hi C in LA.
I've had nothing but good experiences with Humira.
I just did my 4th injection yesterday, so I've been on it for 6 weeks.
No headache, no nausea, no rash - nothing.
I went from "going" 12 times a day down to 6 times a day with prednisone, then once I was on Humira, on day 6, I started going once or twice a day, and it's been about the same ever since. I feel really great!
Do you not have insurance? My doses only cost $30. (I think for 2.)
Anyways, welcome to the forum and good wishes for your Humira treatments.
Really ice up good. It's a bad sting, but completely gone as in 10 seconds.

Thanks for the replies you all!

I have a very high deductible because Blue Cross of CA is so doggone expensive.

I'm not sure what I will pay after this first $1800, but I need to figure out something quick.

I inquired getting assistance through HUMIRA, and they have sent out a packet to me. They say I qualify for their assistance up to $1000. I will then have an organization they recommended I call assist me with some add'l $$$.

I am definitely looking forward to this. I need it so bad right now, I will buy it Monday and simply try to get reimbursed.

Thanks again.

 

[Kev]

Yeah, good luck with getting the financials worked out... think you'll find that is the 'biggest' thing you'll be dealing with, cause I can't recall anyone who has not had some success with the Humira itself as far as treatment goes.

I don't know whether (and am not sure if anyone on here as 1st hand info) the humira route poses the same or similar potential 'anti-body' issues that Remicade does if one is forced to go off it for purely financial reasons (and that can occur)... Think (but don't quote me, my memory isn't reliable) it (Humira) has less potential issues adverse reaction wise than Remicade, but as to if it DOES present the anti-body issue, I don't recall any discussion of that (at least in recent history).. Maybe it's a topic worth discussing with your doctor... you know.. "What happens if I start this treatment, then find I can't afford to continue it?" "Can I stop, then successfully re-start?"

It's a human tragedy that many folks CAN'T afford the meds they need to get well, and stay well... Like, there's no way I can afford Remicade...

 

[BWS1982]

No Vickyoddsocks, just to clarify, Infliximab is the same as Remicade...Humira is different than both....but ALL cost more than an arm and a leg (US expression if that confuses you)....

I'm on Remicade, seeing slow results, but those are results that nothing else thus far has been able to produce, so I'll take them....


And CrohnsinLA, is that LA as in Louisiana or Los Angeles?

 

[Junky Janet]

The big difference besides cost between Remicade and Humira from what my GI told me is Remicade is made with a mouse protein and Humira with human protein.

 

[Junky Janet]

Hi My Butt Hurts,
I saw you are on line now, glad you are having good luck with Humira, just did my first day of injections last tues. wow does it sting. I may be line the LA person, don't know if I'll be able to get a second round or not my ins. is at a gap now, and I'm also getting assistance from a foundation, but if they don't pick up the next round totally , I can't afford the 5800. with out ins. I had a really bad reaction from the Remicade infusions, took 2 and had to quit, they are a meer 9800. without ins. My trips also slowed, don't feel so hot, but I have numerous other problems also. So I'm just hoping for the best.

 

[Crohn's in LA]

All I can say is WOW WOW WOW.

Those prices make me feel alot better about buying it for $1800.00. I had no idea it cost so much.

Thanks for the comments KEV.

BTW: Someone asked if I were Los Angeles or Louisiana. It's Los Angeles.

 

[saidinstouch]

Humira presents nearly no antibody issues like remicade. It is a humanized protein rather than a chimeric protein like remicade. Basically this means the only portion of the protein that is mouse protein are the Fc receptors which contact TNF and the rest of the protein itself has been converted from mouse to human. On the other hand a chimeric protein is part mouse and part human so only a portion of the remaining protein has been converted to a human form. This is where the antibody issue can arise because the body can recognize the mouse portion of the protein in remicade whereas in humira there is such a small amount it basically cannot happen and any antibody reactions would be the result of your body simply rejecting the protein.

So far the humira has worked reasonably well for me except for a stress induced flare I had in January. I would say its a great option for you and hope it works well. I stop by every day or two so if you have any questions, don't be afraid to ask and I will do my best to answer them for you.

 

[Kev]

Hmmm. would it be just the difference between the mouse Vs human protein?

Reason I ask is the rejection factor/anti body development in perfectly matched transplant recipients that thereafter requires them to take immuno suppressors... I would think the chances are less in Humira vs Remicade, but I really wonder if it is NOT a potential risk factor.

 

[saidinstouch]

From my understanding (which granted isn't that high but comes from some experts in the field who pioneered the monoclonal antibody technology), humanized proteins have the proper post-translational modifications to be recognized as a human protein rather than something else that is deleterious to the body. As far as I know that is where the biggest issue arises. I think transplants are different simply because it is an entire organ that has its own genome that is different from the new host which makes it a lot harder for the body to 100% accept it even if it comes from a parent it is only ~50% matched (sometimes it is more or less depending which chromosomes you get from which parent with which genetic traits being expressed). In general I think that is why transplants require continued immunosuppression and why even well matched organs can be rejected, though I could be wrong seeing as I'm not an immunologist and my biology isn't perfect either

 

[Crohn's in LA]

saidinstouch..

Thanks for the info, and very nice to met you.

 

[Jeff D.]

Just wanted to pop in and welcome you here. I'm a little rushed so I just read a few bits from your post. I'll be back later to read some more.

Glad you found us