RA and Humira

Hi LeeLee,

Will your insurance not cover Humira?  I know for many, insurance may deny the claim the first time.  Eventually, though, they all covered Humira.  My rheumatologist told me, prior to putting me on Humira, that an RA diagnosis justifies the use of Humira and that most insurance companies will not balk at it.  Granted, they still make you jump through hoops.  For my insurance, my doctor had to write a lengthy justification for prescribing Humira.  Financial assistance is also available for those prescriptions that insurance just will not cover.  For example, in Maryland, we have the Maryland pharmacy assistance program.  Not too sure how it works because I've not had to use it, but you may want to check into your local state and/or jurisdication to see if such a pharmacy assistance program exists.  Insurance companies also seem more likely to cover remicade treatments than Humira, probably because remicade is much older and there is more research out there on it.  If your insurance absolutely refuses to cover Humira, you may want to inquire about remicade, as it is a similar drug.

As far as effectiveness, as you may have read on my previous post, I've been on it for 7 weeks, and it has not done much for me yet.  My rheumatologist says it can be a very individual thing.  Some people may respond to it; others do not.  I'll ask him more about that when I go to see him next. 

Elcamino

welcome to HW!  wow...what an ordeal to be going through.  as you might have read i too deal with very severe, active and disabling RA along with Crohns and complications.  i am on the Humira assistance program.  it is a form yourself and the rheummy have to fill out.  if qualified, it will cover a percentage of the cost or the entire cost depending on your income and insurance.  unfortunatley i had to stop working in May.  was cut from my HMO and had no income & no insurance.  and in very very poor health.

for starters...it was quite pretentious for someone to state that Humira works for everyone! oh boy oh boy!  if i were that doc...i would definitely NOT put that in writing.  do RA sufferers have success with it?...of course.  does Humira work miracles for everyone?....heck no.  and no medication does in that aspect.

you may find that MTX plus Humira will get you back to a point where you are able to function.  that would be wonderful, and i truly hope that will be the case.

i've had joint pain related to RA since the age of about 16.  also started testing positive since 16 as well....but was told to ignore it because i was YOUNG, and that it was most likely to not cause a problem.

well, now at 24 years old...if i can shower & get dressed, that's a very successful day.

i have to say, that  being on Humira since August...what i found to be the greatest benefit it gave me was relief from RA fatigue.  i suffered MAJOR pleuritis and costochondritis pain from RA and also heart valve problems, and the Humira improved that as well.  BUT....when i hit a flare....those problems DO get worse again.

i wasn't happy with the progress i was making after 5 months of Humira.

so the rheummy put me on Humira weekly.  have not been much better since beginning that regime in december.  so now i am on a Humira once a week, plus Imuran, plus prednisone to try to stop this flare.

i was advised to give this combo some realistic time and look to feel a noticeable change around March.  if not....am onto adding MTX.  Remicade would be after that if all else fails. 

if you do go on Humira and find little success you can also go onto Enbrel.  i was on Enbrel for a year and a half. on Enbrel..i was good enough to finish college.(i mean the bare minimun of showing up & sitting there and going to the hospital [nursing]).

this is a very difficult disease to get a grip on.  when caught and treated very early...it is easier granted.  but a long standing case is tough.

i want nothing more than to have my career as well.  i definitely feel for you!

what can you do now?  if you seriously cannot function and take care of and support yourself, i would pursue filing for SSD or at least some sort of assistance in the meantime.

it's terrible i know.  i forced myself to work all the way to the end...but when ya have to be carried out of work and to the ER, you're a bit in trouble ya know? 

when do you see you doc next?

my heart goes out to you.

sincerely,

Erin

Hey LeeLee,

It's very common to see a person with 2 accomanying autoimmune diseases.  RA & Crohns is terribly common.  The real kicker is that Crohns disease carries with it, it's own family of arthritis! Ugh!  

I hear you and can empathize.  For me, even getting to a point where I am 70 percent better than I am now...that would not be enough to work and support myself!

This is what kills me:  Since being on Humira and stronger meds, when friends & Dr's ask if I am managing this better...I say YES.  But my YES equals BEING ABLE TO AVOID THE ER!  So is that really better? Not really.

That's terrific you were in a remission for such a time!  Your chances of going into another remission are very high if you have been able to in the past.  It might take a real long time...but maybe your body is capable of doing so.

Yeah, sounds like you're very similar to me right now.  I can shower maybe at least every other day or even every day when I have good mobility.  I can put my hair up.  Typing hurts, but I do so from laying down in bed which makes it less painful.  But I have a real problem with preparing food and actually eating ya know?  When you're in pain, one really have no desire to eat.  And on most days....don't have enough mobility to cook.  Good thing I have CD....the less my gut is active the less chances are I run into trouble!

I think you are being very realistic!  It takes a strong spirit to assess what you are capable of.  I attempted over Christmas time to "volunteer work" @ my old job.....didn't last more than 2 hours.  And that was just for one day....and shot me into an even bigger RA flare that I haven't been able to kick.

This is rough LeeLee and I hope you get some security.  I never had a "Plan B" because I took for granted I would be good enough to work.

Seriously? THIS IS WORK ENOUGH! When you have it BAD...it's a 24 hour nonstop/no break/under-paid(well NO pay) job!

So are you pretty much systemic in your disease? RA effects my heart & lungs as well as the joints. 

What are your major problem areas?  Would you/could you file for temporary disability at the least?

Sincerely,

Erin  

I just saw your posting today.  You inspired me to become a member.  I have had active RA for 5 years.

I have been on Humira for a year and it has changed my life for the better.  I went back to teaching!!  I do half days for a 5th grade class.  I also take methotrexate too.

Recently, I have had some heart trouble, and wondered if it was related to the Humira.  I have been unable to find any relation other than if the patient already had heart failure.  I put in heart and Humira and found your posting!

I hope you are able to afford it, because, it can work.  Can you run remicade or embrel through your insurance if humira has been rejected?  Oops, I just realized two things.  I just repeated what someone else asked you and the date on your posting was a while ago.

Let me know what has happened over the last few weeks.

There is hope.  Yes, there is still some pain, yes there is still some fatigue, but compared to what it was.....this is heaven.

Good luck,

eduk8

To answer your question it took 6 months.  However, the improvement was gradual. I did see it happening after 3 months.

Your story is so sad and yet so typical.  I have been there to some degree or other.  It is very discouraging not to be able to work or volunteer.

Would you mind sharing with me how you noticed your lung and heart involvement?  I have been having intermittent symptoms of heart palpitations, cough, shortness of breath, chest pain, since December.  I just had my complete work up yesterday.

Do you have a family?  If so, how do you take care of them all too?

Thanks,

Love and Light

eduk8

I haven't gotten back on line until just now and saw that I had a reply to my post.  I have been very sick with an infection that occured after taking the Humira.  My insurance did pay for the Humira, and I took my first injection Thursday evening.  I ended up in the emergency room with a high fever and chills, highly elevated blood pressure and pulse, an extreme rheumatoid attack and headache .  I think we have the infection in check now.  I got immediate care at the ER and was fortunate to get a doctor that knew his stuff.  In a matter of 15 minutes with no waiting I had my blood test results, and the doctor had a serious antibiotic going.  I see the doctor every day, and I will be on this antibiotic for 10 days and then have my blood checked to see if the infection is completely gone.  I still have a bad headache and face and gland pain.  I still have heart palpatations and much crippling left from the attack or reaction. I am feeling much better now.  It is good that the Humira works for some people, but I just had a serious reaction to it.  I think I won't try anything else for a while.  MY Rheumatologist has not returned my call.  I told his nurse that I nearly died.  She said okay.  I think I am here only because of the immediate action that I took to get to the ER and then the immediate attention and action that the hospital and the ER doc took.  I think there will be no report of this reaction to the Humira people unless I do it.  The ER doc said to tell my rheumatologist that I cannot take this again that the infection and other problems were a reaction to the Humira.  So I am going to the Humira site to see if I can tell someone there.  I don't know if it is important for people to report reactions to drugs or not.  I feel that if I had died, it would not have been reported.  leeLee

   Erin,

I don't get my results until next Friday.    That figures.

Here I wait.  My mother is dying from scleraderma.  It has given her ILD and she is in the last stages.  I recognized that we have similar diseases (autoimmune in nature).  We were dignosed 2 years apart. I was diagnosed four years ago. The interesting thing is that I am adopted.  My biological mom died of lung cancer 5 years ago.  There is no RA on her side of the family.  I often wonder if we were exposed to something.??  It has taken me four years to talk about this.  This is the first time I am writing about it and sharing in this manner.  (about having RA.)

  I have a husband that I married only 5 years ago and two teenage daughters from another marriage.  I was active and working full time when I "got sick".  Now these darn connective tissue disorders/auto immune diseases run my life.

I am very fortunate that I too lived many years uneffected.  I too went to college and traveled some.  I still do when I can.

I am 41 years young and deal.  I watch my mother suffer through this.  I feel badly for her.  We are best friends too.

Well anyway, I was also wondering what they have done for the cardiac involvement that you do have?  Do you take any meds?

Take care and I hope you have a good weekend.  Go Broncos!  Oh wait.  That was last time.  (From Colorado)

GO Steelers?

Bobby Sue (eduk8)

also did you know of any sinus infection that you had before the took this drug?

i ALWAYS have a sinus condition because i live in fl and the trees and flowers are always in bloom and i am allergic to dust which there  is plenty of down here in fl as everything is sand.

i hope you feel better son.

by the way how many people have died on this drug, do they give you this info at the time of you taking this drug? the package inserts are so small can anyone read the,m at all anyways?

 i cant unless i had a micrscope

everyone always says dont let those inserts worry you. well i do let them worry me. since there are bad reactions, then i wanna know about it and what my chances are in taking this drug also.

btw, you are correct in assuming that had you died, they never would ahve reported this to the drug company. they would have said it was from the infection and not related to the drug as a way of protecting the drug companies from being sued