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LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 1/19/2006 11:36 AM (GMT -7)   
:-)  Hi.  I have had RA for 14 years with years where it just arrested itself. about a year ago the RA hit me full force.  It is totally different now than it has been. I have been on methotrexate for 9 months.  It is not really helping as much as I need.  I had to quit teaching school last year.  I was not and still am not able to take care of myself, let alone work. I asked my doctor about writing a statement for social security.  He replied, no, he wants to get me able to work instead.  That sounds good, and of course, I want that also.  I have also worked these years with the RA not so severe.  My rheumatologist wants to put me on Humira and says that it will work for me and that it does for everyone.  I asked him if he was sure, and he said yes.  After reading here and elsewhere, Humira doesn't sound so much like a sure thing.  I certainly see how it has helped many, but I just know what is happening with myself at this time.  I only have hopes of being able to do for myself and enjoy living.  I am far from this now.  Also, I can't afford the Humira.  The only way I could afford it is with disability and medicare.  I was really shocked that my RA would not help me with this as he knows better than anyone just how disabled I am. Please help with any ideas or information about this.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 1/19/2006 12:18 PM (GMT -7)   

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

cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 1/19/2006 12:29 PM (GMT -7)   
Hi Lee:
Welcome to the forum. Nice to meet a fellow RA patient. I just started HUMIRA a week ago so can't make any great revelations but was told it could be an instant response or take 3 months or more to see a difference.

Was nice chatting with you earlier and I look forward to many more chats

Take care and good luck
hugggggs,
=^.,.^= Cindy


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 1/19/2006 12:30 PM (GMT -7)   
Thanks Elcamino. I am waiting to hear if my insurance will pay; however, I will still have to pay a goodly portion. I will give the Humira a chance. The thing I suppose I don't like about it is that if it does work for me, I have to stay on it. At best I will have to pay at least 20% of the 16K a year. If it is a miracle drug, then it would be worth this. I did not respond to the methotrexate so I have to try.

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 1/19/2006 12:57 PM (GMT -7)   
Thanks a lot Cindy. It was nice meeting you in chat. Everyone has a been very informative. I look forward to seeing you and chatting again. Hugssss LeeLee :)

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/19/2006 4:56 PM (GMT -7)   
dear LeeLee,
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

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 1/19/2006 9:03 PM (GMT -7)   
Thanks Erin.  I just saw my doctor day before yesterday.  After seeing him, I came on line to research the Humira and found this group.  I really appreciate the information.  I trust people who have had experience much more than information from drug companies, and sorry to say, but also what my doctor has to say.  You certainly have been through so much.  It sounds like a big battle for sure.  I hope you began to do better.  I have hopes of doing better.  During the last 14 years, I have had great periods of great improvements.  This time though is different in that the RA has attacked my entire body with full force, it seems.  I have to do better to just make daily living a little easier.   I am some better in that I can brush my own teeth and brush my own hair.  I can bathe and go to the bathroom by myself most of the time.  I won't mention what all I can't do as I am sure you know. At this time I cannot picture myself working.  Even if I had vast improvements I feel that I could not hold down a steady job of teaching or any job even part-time.  I am not being negative.  I just know from my past experience. I had RA that I could fight for 14 years.  I hope to be cured or have the RA arrested, but from what I have seen so far, it is not that simple.  I would like to hear from people who has taken the Humira and had their RA arrested, especially severe cases.  The studies that I have seen on Humira show only improvements, but significant improvements, I hope.  I would like that. Is it common for RA patients to also get Chrons disease?  It seems I hear that a lot.   I really wish you well.  I cannot imagine fighting both the RA and Chrons. LeeLee
 
 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/20/2006 5:01 AM (GMT -7)   

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 YESBut 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  
 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 1/20/2006 9:27 AM (GMT -7)   
Hi Erin.  I have to say that I have it good compared to you.  I have only the RA and probably fibromyalgia.  Except for all my bones and joints and muscles, I am in good health.  I tried to work last spring to finish up the school term. It is very bad to have to have a substitute at the end of the year.  Our schools here start August 1 and go to about the 24th of May.  I got really bad last April.  Other teachers would do my leg work and take my kids outside and my assistant would help and my principal would help.  My husband would drive me to school.  I could not turn the key to turn the car engine on.  Once he had to brush my hair and teeth, and I still went trying to help the kids finish up the year.  I would go and try and have to come home before 1 or 2 hours.  Some weeks I could only work a day or two or part of a day or two. I could not work any for a couple of weeks.  I am lots better than that now, but there is no way I could work. Soon new contracts will be out, and there is no way I would sign one.  I didn't know about the temporary disability.  I will check into that. Thanks for this.  I am so much older than you.  You are just too young to have this happen to you.  I pray and hope that you will get much much better soon. LeeLee

eduk8
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/1/2006 1:49 PM (GMT -7)   
Hi Leelee,
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

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/1/2006 4:07 PM (GMT -7)   

Dear eduk8,

I am so glad you found Healingwell!  Please come back & post here and share your story with Humira.  It's always needed to hear a good success story!

I too am on Humira for RA.

How long were you on Humira when you started to notice results? 

Teachers are wonderful people.

Take good care.

Erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.


eduk8
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/2/2006 8:28 AM (GMT -7)   
Hi Erin,
 
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 :-)

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/2/2006 9:52 AM (GMT -7)   

Thank you eduk8,

6 months eh?  That provides some hope here for me!  I'm in the 6 month area now with Humira.  I would really like to see the combo of Humira weekly and Imuran get my RA in check.  Having been on Enbrel for over a year & have that not work...it's hard to get your hopes up. 

It is very discouraging.  Thank God for a sense of humor and I'm happy I did a lot of livin' before this all became disabling.  I'm grateful that between the age of 16 to 20 I travelled Europe and the Islands, worked a lot, went to University (had to leave though), and was in the most part VERY HAPPY AND ACTIVE!  So in a way, I'm glad I grew up fast and lived hard...or else I'de really be pouty now. Growing inpatient NOW! 4 years of waiting AGAIN!  And I want things to get going! 

With the heart & lung?:  about 2000 I started to, more than usual, hit the floor!  I do have an underlying seizure disorder...but sometimes I feel they weren't seizures.  It was like I couldn't get enough breath in sort of feeling.  Like I could be sitting, but it would feel as though I was climbing stairs.  I ignored it till 2004 when I ended up going to the ER for shortness of breath and having my chest hurt so bad I couldn't breath in.  Also, I could feel my heart "squeeze"?....sounds weird, but it would happen when I would lay on my left side and when I was active.  Also, my blood gasses were off.  And it just got to a point where it felt like I was sufficating.  And for years I was freezing! My extremities would be ice cold even in 100 degree weather.  My BP was also very low always. Keep in mind though, the RA was left "ignored" by doctors because they thought I was too young and would most likely get it when I was older....they thought that perhaps it was just genetic and at 16, I was still able to do "normal" things.....so I ignored it best I could as well.  In fact, growing up, even in grammer school and highschool...I thought everyone had bad knee and back and hand and jaw pain!  I never knew anything else. 

Had an echocardiogram and PFT and XRAYS done...and then that's when they found out what was the matter.

Do I have a family?  Unfortunately no.  If I were able, that's what I would be doing.  I have 4 cats and a WONDERFUL boyfriend of over 2 years now.  I have my mother live with me during the week....as I cannot cook/laundry/keep up house and sometimes not even take care of myself.  And I take off on the weekends to upstate NJ where my honey lives....he's low mantainance, LOL!  Does on occassion require a good foot rub, and if the hands are up to it....I'm happy to do so!  

When should you get your results back?

I wish you well.

Erin 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/2/2006 8:04 PM (GMT -7)   
Hi All,
 
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.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/3/2006 9:57 AM (GMT -7)   

LeeLee,

You can and should report it.  When I was on Enbrel I used their hotline many times and periodically they would call & conduct surveys to see how I was on the med.  I haven't done so yet with Humira.  But call their number, register yourself as a Humira patient & then they will gather information on you and take down the incident that happenned to you.  Don't worry, they will be nice! And VERY APPRECIATIVE of the information because it will then go into the % of people with reactions sort of thing ya know?

They rely on things like this.  You're thinking the right responsible thing...so do it when you feel better ok!  The number should be on the paperwork or even the box of injections.  You should get an RN that takes the history/interview.

I called many times with Enbrel for burning/infection/discoloration of the skin etc....and they take all that information and report it for their studies.

Rest up, stay cozy, take it easy!  {{{{{{{{{{{{{{{ big hug }}}}}}}}}}}}}}}

I am so glad you went to the ER. Relax & get lots of rest.

Erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avanza 30mg & too many others.


cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 2/3/2006 1:22 PM (GMT -7)   
Hi LeeLee:

So sorry to hear of your reaction to HUMIRA. I started on my program on Jan 11/06 so have now given myself two injections, with the third due on Wed. (Feb 8). I am cautiously optimistic because I felt a bit of relief from my shoulder pain after the second one.

All meds definitely do not work for all people, and I have failed to get results from many. Your rheumy needs to know what happened...keep calling til you get a response !!

The HUMIRA/Progress program here in Canada is fantastic, and they really do care about their patients (and hopefully it's the same in the USA).

I've missed you in chat and I hope we can connect one of these days.

Feel better hon
hugggggs,
=^.,.^= Cindy


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/4/2006 8:49 AM (GMT -7)   
Thanks Erin and Cindy :))! Today I feel lots better. I do plan to find the Humira number to try to speak with someone to report my reaction. I also have to contact the company to not send any more injections. The nurse at my rheumatologist's said they would stop the medication. I said but you started it without discussing it with me even. Anyway her entire and complete response to all that said was "okay". I feel that even with great consideration I would have tried the Humira, it is just that my doctor did not even slightly discuss it with me. The nurse threw me a phamplet and a CD. I thought I had until my next appointment to decide after my doctor and I discussed it some. It came so I took it. I was one of the unfortunate ones that had a reaction. So yeah, I was angry because I could not even speak with the doctor, and the nurse was unconcerned. My rheumatologist is a quack. He is just taking money and running people through. I won't be back to him. Also, I will try to report him or find a way to say how he has done me. My doctor here is not commenting, but I see his face. The doctor does say that this is a very serious infection caused by the Humira. It is a sinus infection affecting my head, face, throat, gums, and ears. Finally today, I have belief that I will live. I will be seeing my doctor here regularly and will be on the antibiotic for another 10 days, and then he will check my blood for any remaining infection. Thank you for your support. I hope to feel like chatting soon. I hope you are all doing okay. {{{{hugs}}}} LeeLee

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/4/2006 9:04 AM (GMT -7)   
Oh yeah, Cindy. I don't actually know, but it would be my guess that if you had no bad reaction to your first dose, that you will be able to take the Humira. My reaction actually began in just a couple of hours after my first and only injection. I then thought I had a bad tooth that was causing my headaches and face pain. My dentist saw me and said no, he didn't think so. I have the arthritis in my jaws really bad. We thought that was the problem. Then I had the all over body reaction and high fever and went to the ER. The real bonafide serious infection took 5 days to materialize. I may could have done better if I had realized I had the Humira reaction to begin with, but for the first 4 days I had pain only. My advice is for a person to be overally cautious with the first injection and to not blame their arthritis for anything. I loved chatting with y'all and hope to get there soon. :)

cc^
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 2/4/2006 1:36 PM (GMT -7)   
Hi Lee:

Glad you are starting to feel better and look forward to having you back into chat when you feel up to it.

From what I have read on HUMIRA, you can react anytime, as we were told when I was on REMICADE too, you have to be acutely aware of 'anything unusual'. Hopefully that won't happen, and I will keep my paws crossed (but it makes it very difficult to type that way) tongue

I hope you can find a new rheumy ... I am sure glad I did. When the last one told me my pain had NOTHING to do with RA, it was the final straw!!

Take care, talk to you soon .....
hugggggs,
=^.,.^= Cindy


eduk8
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/5/2006 12:23 PM (GMT -7)   
 
 
 
 
   Erin,
 
I don't get my results until next Friday. confused    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)

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/5/2006 9:03 PM (GMT -7)   
Hi BobbySue,

I am so sorry to hear about your mom. I will have to look that up on the net here. I don't know what ILD is. Let us know how your tests come out. I hope you have good news. LeeLee

missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 2/12/2006 3:56 AM (GMT -7)   
hi leelee123- i am sorry to learn of your bad reaction to this humaira. did you have the TB test that the rhuemy was supposed to have given you before you began this drug?
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
 
 
 
 
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/12/2006 8:38 AM (GMT -7)   
Hi Missie,
 
Thanks for your reply and comments.  No, my rheumatologist didn't give me the TB test or ask me any questions or tell me anything about the Humira.  He just sent it to me through the BioPlus company.  I did not even know that I was on the Humira even.  I thought I had until March 6, my next appointment to decide.  I thought we would discuss it on that day.  The deaths for Humira are mostly from infections.  I got my information off the net here from the trial studies of Humira.  To me, it looked like a big percentage.
 
I reported my reaction to the Humira company and the BioPlus Pharmacy.  The people from both of these groups were very nice and helpful.  The Humira safety nurse said that I had to speak with my doctor.  She said to be persistant and keep trying.  She then said that she was going to speak with him and for me to call later.  No, I could not speak to the doctor nor could the Humira people.  My rhematologist's nurse told Humira that I had a reaction to an antibiotic and not Humira and that I just had a sinus infection like she gets all the time.  I had to call the Humira people to tell them that no, I had taken no antibiotic until after the reaction and my blood count showed an infection.  When I called the Humira safety person, I found out that they were not able to speak to my doctor either.  The nurse practictioner told me that she was not taking me off of Humira as what happened to me was not a reaction.  The Humira company asured me that they did not write down one word that nurse said.  I was told by everyone else to not ever take Humira again that it was a reaction.
 
I ended up in the ER again this Thursday from horrible excruciating pain of the face, head, neck, ear, and jaw. I got another doc this second time.  He gave me steroid shots and a prednisone packet and then got  an appointment for me with another rheumatologist for this Tuesday.  I know Humira has done lots of good for lots of people.  It is just a fact that everyone cannot take every drug.  Most people also would not have a quack for a rheumatologist or even a nonprofessional ignorant nurse in charge of their rheumatoid.  I feel sure that Humira is a miracle for many people. I just can't be one of those people.  I am feeling much better now and feel that getting the new doc is going to be the most wonderful thing to come out of this all.
 
I just want to say to everyone that if you don't like your doctor for whatever reason, get another one.  Your reasons are very important and real.  You are paying for an office visit with a specialist. If your doctor is not doing right, he won't do right in an emergency.  Don't wait for your doctor to do better.  LeeLee

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/12/2006 9:10 AM (GMT -7)   
I forgot to address the sinus infection. No, I did not have a sinus infection before the reaction. I have never had any sinus problems before. I don't have headaches ever. One thing that I did have and still have is very serious facial pain. I have arthritis in my jaws really bad. This may have brought out the attack to this area. I did have a septic rheumatoid attack when the reaction occurred. At this time the rheumatoid attacked every bone and joint in my body. The second ER doc tested my blood again. It showed no infection. He even says that he thinks I didn't have infection that the blood count was due to the extreme level of inflamation in my body. I don't understand this at all. The Humira lists septic rheumatoid as a side effect. I know that I got a headache immediately and my jaws and face and neck started hurting really bad. Then I had the all-over attack of chills, fever, extreme fever with all the joints hot to the touch. I still have the facial and jaw pain, but the rest of my body is doing pretty well. I have to say that prednisone is some good stuff. I hear awful things about it, so I hope I am on this temporaily. Right now, it has saved me. I feel that I was dying nearly. I wanted my head cut off. :( so I am so glad to be over that pain. :) LeeLee

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 2/12/2006 10:33 AM (GMT -7)   
Lee Hi and Welcome to HW.I'am sorry that you are having these problem's but i can relate as to what you are going through and it's not easy having to deal with the pain and not being able to do for your self.I have RA,OA,ANKYLOSING SPONDYLITIS AS WELL AND I AS WELL HAVE CROHN'S AND I HAVE SJOGRENS DISEASE AS WELL.I'am on Humira when I was first put on it I had my first shot at my Rheumatolagist office and ever thing whent fine The first shot was 80 and then whent to 40 every other week and I gotta tell you it has helped me I was in a wheel-chair due to the arthritis and due to sever edma as well.I give full cridit to HUMIRA for getting me out of the that wheel-chair.But the one thing you must remember is that some times to where one med may help me does not mean it will help you.But this is something that you and your Rheumy will have to decide on.Now as for him not wanting to help you with SSD some Doctor's just don't beleive in it.I was very forchanet (speeling)that every one of my Doctor's were behind me all the way and I'am on disability now.I would rather be working but some time it's out of our controll.I do hope that you get to feeling better and please continue to come here.
Thanks
Curley......
a.k.a.Mela...........

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