Humira Reactions-Scared!

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LisaLee37
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Date Joined Apr 2005
Total Posts : 384
   Posted 11/4/2005 6:54 AM (GMT -7)   
Hi, I am new to this forum, as I generally post in the Crohn's Disease forum. I have had Crohn's for five years and have exhausted every drug imaginable. I was on Remicade for two successful years, until 6 months ago when I began building antibodies and was diagnosed with drug-induced Lupus. My doctors decided to try Humira (even though it is apparently not FDA approved for Crohn's). I had my first loading dose of 160mg on September 9th. I reacted 9 days later with the Lupus symptoms. I tried it again 3 days ago at a much lower dose of 80mg. I am feeling short of breath (almost like an anxiety feeling). I have heard so many good things about Humira. I do not want to stop but I am really scared that these feelings are real reactions and not just made up in my head. If anyone has experineced any reactions, I would appreciate your feedback. Thank you. Lisa.

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 11/4/2005 8:17 PM (GMT -7)   
Lisa,
Try taking your pulse. For a minute and see what it is. Normal is between 60 and 100 beats. And takke your temperature too. If you're feeling short of breath and feel like this might be a reaction, at least by taking your pulse and temp you can get some tangible numbers. Some reactions produce a fever (so get to the doc ASAP if you have a fever).
Do you have a rash?
I'm on Humira as well, and sometimes I feel like I'm about to pass out when I get up from sitting for a few days. And even just plain old flu like some weeks too.
How was it today?
I do get short of breath and chest pain but that was going on before the shots, so I can't really say if that's giving me those symptoms.
Do you have any allergies?
You can never be wrong by checking it out with your doc or nurse. Especially if it's happening still and every time you get the injections...something might be up...or it might be minor, and it just takes some time to go away.
But if you're worried, it's better to call and complain about it. I would. Never can be too safe, and at least you'll get peace of mind.
Take good care & please write back to let us know how you're doing.
Erin

LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 11/5/2005 10:02 AM (GMT -7)   
Hi Erin, thank you so much for your kind response and support. These last few days sure have been rough! I will definietly take my pulse and temperature. This was my second time of receiving Humira. The first time back in September, I broke out with a rash 9 days later on my injection sites and all over my arms. I just received my second injections last Tuesday, and have not broken out in a rash as of yet. I pre-medicated with Claritan and Prednisone for a few days before and they wanted me to continue for 10 days after. By Thursday, I thought I was losing my mind. I was so filled with anger and irrability!!! I am ususally a happy-go-lucky person, so I immediately called my doctors and insisted that I stop the meds. Since, then I have still been feeling short of breath and rapid hear beat. Again, the rapid heart beat woke me up out of a dead sleep at 4:00am this morning. I took a 1/2 of a Ativan and that has seemed to calm things down a little. I just wish I knew if this was a reaction or just plain old anxiety attacks. Nevertheless, I will take your advice and contact my doctors first thing Monday morning. Thanks again for your help! Take Care Lisa

savannahlady
New Member


Date Joined Nov 2005
Total Posts : 2
   Posted 11/7/2005 9:11 AM (GMT -7)   
Hi there, I can relate to your situation.  I have been taking Remicade for over a year now.  The problem is this: within a week after infusion, I develope bronchitis and a terrible cough.  I have been on antibiotics many times, but it always comes back. I have spoken to dr about it often but he doesn't seem too concerned.  That really bothers me!! I think he has too many patients!!  The main thing that frightens me so much is this: when I was 11 years old, my mom had TB.  So all of us children were exposed, also found that I had old scars that had healed on xrays.  I was told not to ever take skin test again.  Now, with Remicade, that is the main side effect, with death!! So I feel like I am a walking time bomb and can't seem to make dr. understand.  Please advise.  I need help so badly.  Thanking you in advance. 
 

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 11/7/2005 10:32 PM (GMT -7)   
I took Remicade for just under 2 years. The last 6 months I was a mess, I had liver problems, constant infections (lung, pneumonia, etc.) and so on. I felt like I was on my death bed most of the time. I'm 35 and have 2 little ones and was working (a good job I lost due to illness.)
 
You have to decide if the benefits of Remicade outweight the side effects you are dealing with. I was feeling so helpless and out of control, my children were starting to only remember me as being sick...though the drug was usually helping my arthritis, in the end it stopped helping that all the time as well. I knew that it was no longer to my advantage to continue taking it. I too felt like "a walking time bomb."
 
I'm supposed to start Enbrel, but the info/questions here re:Humeria causing issues is really making me even more hesitant than I already am about starting it. I fear that Enbrel will do the same thing to me as Remicade - knock my already weak immune system down to piddlings. I've had some close calls already and am not sure I want to take that chance with my life again.
 
Prednasone also made me quite unlike my usual laid back, easy going self as well.
 
Good luck in your decisions, both of you.
** 
 


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 11/8/2005 8:59 AM (GMT -7)   
Savannahlady, have you thought about seaking a second opinion? I have many times. I live in Southern California and sought out one of the top specialists in the world at Cedars Sinai in Los Angeles. I would definitely encourage you to do so. It is so difficult to make the decision of trying and experimenting with such potent drugs. I have been told that many people who are allergic to Remicade do much better on Humira. Obviously not in my case!!! I wish you both the best!

gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 12/10/2005 2:17 PM (GMT -7)   
does anyone know of a delayed hypersensitivity reaction (DHSR)to humira if they had that type of reaction to remicade?  my daughter (27) had serious delayed hypersensitivity reaction (DHSR) 11/15/05 after one remicade infusion on 11/7/05...had 5 other remicade infusions in past - last one was June of 1999 - didn't have the reaction back then but did obstruct 3 weeks after the remicade in june of 1999 and needed major surgery...has been well since then until relapse in Feb of 2005 (now Crohn's in small intestine -previously confined to colon which was removed) - not responding  to any meds (6mp, cipro, etc.) so doc tried reintroducing remicade last month which resulted in that severe reaction which was treated with major doses of iv solumedrol and benadryl...just had first humira treatment (80mg) this past Thursday and is worried about the same type of reaction..my searching hasn't indicated that type of reaction in all the studies of RA and the clinical trials for Crohn's but wanted to know if anyone out there has had it...thanks for letting us know asap.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/12/2005 9:46 AM (GMT -7)   
Oh boy, I see why such a concern. I haven't read anything either of that happening with the Humira. If anything, I would feel more comfortable knowing that humira is going into the sub Q tissue and absorbed slower...rather than shooting through an IV.
The best thing is to just stay by her and watch. I haven't known anyone who has had a humira reaction after bad Remicade sensitivities. I'm on humira also for RA and also the CD.
My heart goes out to you...perhaps someone here has a similar experience & can provide more information.
Sincerely,
Erin

LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 12/12/2005 10:02 AM (GMT -7)   
Unfortuantely, I am one of the few who had very bad reactions to Humira. I was succesfully on Remicade for two years (no problems at all), until I developed antibodies, which caused drug-induced lupus.

My doctors felt that it would be worth it to give Humira a try. After I received a loading dose, I devloped the lupus symptoms 9 days later. The second injections, they decided to pre-medicate with Claritan and Prednisone. I did not have any lupus symptoms, however, my blood pressure sored to 166/105, chest pains, lung pressure, dizziness and a rapid heart beat for about three weeks. Apparently these symptoms are very rare. Needless to say, I am no longer on Humira and I am begining to flare-up again. The only other option now, would be Methotrexate. After reading many of the postings, I am not sure if I am willing to sign up for this one!

Take Care. Lisa

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 12/12/2005 11:17 AM (GMT -7)   

Question - could that reaction, Lisa, been from the prednasone and not Humeria?

I have not taken Humeria, but I know my PCP had a bad reaction to it. I think it started soon after she started treatment gradually getting worse with each injection. Her reaction was mainly hives I believe - but they got bad enough that she had to be hospitalized and they spread over her whole body. She said she was basiclly one giant hive.  Even with her being a physician, HER rhuemy dismissed the fact it was the Humeria and told her to keep taking it - she had to be wrong.

We ALL know that rhuematolgoists stand by the idea that NO drugs give side effect! (sorry, I needed to vent for a minute.)

Good luck.  

**


 


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 12/13/2005 7:28 AM (GMT -7)   
Actually, I did have a reaction with the Claritan/Prednisone combination. I had horrilbe iritability for the days that I was on them. However, once I stopped both of these drugs, the symptoms went away by the next day. I know that my reactions to Humira is rare, however, if you read the side effects...I had almost all of the "rare" ones. Yep, I agree, about the Rhuematologists. When I was on Remicade, he never figured out that my skin condition was the start of drug-induced lupus. At least my G.I. is smarted enough and leary of drug reactions. If it wasn't for him, I would probably be pretty sick just from all of the reactions I have had from different meds.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 12/13/2005 8:06 AM (GMT -7)   

Yeah, I had to stop the Remicade no thanks to my Rhuemy. He insisted the constant pneumonia and liver problems were not the cause of the Remicade....yet here I am a year after the problems were at their high and my liver measured back in the 'normal' range and though my immune system is weak (but always was, just not quite this bad) I'm much better than I was for the first 6 months of this year.

Also, while taking the infusions I started having problems with latex and other adhesives. Never had a problem before that.

GOod luck in finding a medication that helps you out. I know I can't tolerate prednisone either.

**


 


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 12/13/2005 9:19 AM (GMT -7)   
Thank you! Best of health to you.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/19/2005 11:16 PM (GMT -7)   

Hey Gail & Lisa,

Just wanted to see how you are making out with the Humira.  Wishing you well.

Erin


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 12/20/2005 8:02 AM (GMT -7)   
Hi Erin...Thanks for checking in on us. Well, I had to stop the Humira. Now that it has given me hypertension, they won't allow me to take anymore risks. I just pray that the high blood pressure will reverse itself. It has been over a month since my last dose. Needless to say, I have exhausted all of the major Crohn's meds that are available at this time. The only drug available would be Methotrexate, and I am not willing to go on it after doing some research. My name game plan is to try Intergrative Medicine. I am going to a clinic that is staffed by medical doctors who try a more natural approach. I am so desperate... will try anything!

Take Care Erin...and Happy Holidays!

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/20/2005 8:51 AM (GMT -7)   

Dear Lisa,

Smart move on the integrative approach.  I sorta know how you feel, for the RA I've been through almost all of the meds except methotrexate & Remicade.  All else has failed so far. I'm hoping that the Humira I'm on now will eventually help or Remicade in the future.

It's scary & discouraging when running out of options.

The path you are choosing sounds wonderful.  They might look at the BIG picture and treat evrything as a whole.  With natural and medical treatments, diet, etc...those docs may hold the key to helping you.

I really do wish you well & hope you get success with future treatment.  And who knows what the FDA is working on NOW!  You never know.

Take care,

Erin


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 12/20/2005 12:06 PM (GMT -7)   
Thank you Erin, for your support and encouraging words. Be well and best of health to you!

gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 12/20/2005 6:53 PM (GMT -7)   
Thanks Erin for checking on us..my daughter is scheduled to have the next Humira shot this Thursday and of course we're worried about a reaction after what happened with the Remicade.  She actually felt better a few days after the first shot but we're guardedly optimistic -hoping she'll be able to tolerate subsequent doses. 
Do most of the patients on Humira give themselves the shots, have a family member do it, or a medical professional?
Also, we've tried integrative medicine approaches - from yoga, meditation, reiki, naturopath to total ng tube feeding and no food for 12 months, at all..the only thing that really worked was the ng tube and no food but it's no way to live!
Two great books I'd recommend for anyone with a chronic illness- Anatomy of Hope by Dr. Jerome Groopman and Just Fine by Carol Sveilich...let me know what you think.
 
Good luck LisaLee - please keep me posted on your progress.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/20/2005 9:25 PM (GMT -7)   

Hey Gail,

I wish you luck upon the next Humira shot.  You're right, the NG tube is no way of living especially for such long terms.

Typically when going on injectables like Humira, the first shot is given in office by the doc or nurse and then sometimes they make you demonstrate how you give yourself one.

When I started giving myself injections I was already an LPN, so they skipped me on the demo!  I was very comfortable handling needles etc...

Some people just cannot do it, and that's understandable; so therefor a family member can do the injections.  Then again, a person who self injects their meds gains a lot of confidence and a sense of control over their condition, so it's a definite boost!

I really do wish you the best & I pray for success with the Humira therapy.

Sincerely,

Erin   


gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 12/21/2005 8:31 PM (GMT -7)   

Thanks Erin...one question re the shots...the instructions say to put the needle in at an angle and then pull back slightly on the syringe to check for blood and if some is drawn not to give the shot...our nurse said that she doesn't do it that way because the odds of hitting a major vessel with a subq injection are rare and if blood was drawn, she wouldn't have another syringe to use since they only give us the one we need..since you're an lpn, any thoughts?

 

also, my daughter felt much better within a few days of the first shot and it lasted until today (day 13)...her doc said that the half-life of the humira is around 8 days so it's probably worn off and that's why it's given every few weeks...does the humira ever bring someone into remission or must it be continually taken every 2 weeks for ever???


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/22/2005 5:28 AM (GMT -7)   

Hi Gail,

(Actually, I'm in grad school with my RN now! weehoo!)  They always write and we're actually taught by protocol to aspirate (pull back on the syringe to check for blood) BUT...for intramuscular inj. yes.....SUB-Q shots like Humira??  It would be a very very RARE occassion to see a blood return.  So no....you need not pull back the syringe & check for blood.  Just inject at a 45 degree and you'll be fine.

Where is the shot going?  I've found that it feels the best in the abdomen.  The humira stings....and once I did it in my thigh.....OUCH!  But the abdomen is super, much more comfortable in my opinion.

That's wonderful she felt a little better.  True, the Humira has peak effect in the days 1 to 8 and then it starts to deplete.  I am on Humira every 4 days.  So, it may be that if she has success with this, and starts to notice that after day 12 she starts to feel badly/worse...the doc could increase the shots to once a week.  The FDA and docs are really getting into the higher doses of therapy now.  It's a great thing.

With remission...well, in my rheumatologists words, "You're in this for the duration".  That's what I was told.  I've been on injectables for 2 years now.  If your daughter is pretty bad now...it may take a while, OR it could help rather quickly, but therapy will need to continue.  How long will one need the shots?  I don't know.  To me, as long as they are working, and things aren't getting worse, I wouldn't quit!  Even with a full remission....the meds might be needed to MAINTAIN the remission.  I'm sure the doc can explain things even more.

I wish you all the best in the world!  In my prayers.  I'm very happy there was a difference noticed after the injections.  Hang in there!

Sincerely,

Erin 


gail878
New Member


Date Joined Dec 2005
Total Posts : 14
   Posted 12/23/2005 7:26 AM (GMT -7)   
Erin -Thanks so much for taking the time to reply and for your comforting words.
 
Best wishes to you for a happy holiday and a very healthy New year.
 
Gail
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