Anyone on Humira...side effect?

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LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 7/23/2006 6:09 AM (GMT -7)   
Hi, I have crohn's disese and generally post my questions there. However, I was hoping that maybe someone here has some experience with Humira.
 
One year ago, I tried a loading dose of Humira (160mg). After the loading dose, I broke out with hives on the injections sites 9 days later. A month later, I had two injections (80mg). After second set of injections, I felt pressure on my chest, high blood pressure, and starting having vertigo.
 
I was so stressed out from being sick at the time, and was so deathly afraid of the drugs, that I am not sure if I was having anxiety attacks or if these were real side effects, so I decided to discontiue with the Humira.
 
My flare up has been so bad for the last 6 months that I am giving it a try again. My G.I. decided to start off with a very low dose to make sure I don't have any reactions. Last Thursday, I had my first injection (40mg) and everything went well. However, last night I felt like my heart was going to pound out of my chest. I took my blood pressure and it was normal, however, my pulse was 96 (and I had been lying down). Today I felt a little short of breathe on and off througout the day and my heart was beating fast on and off again too. When I checked my blood pressure again normal, and pulse was 86. HMMMMM!
 
My question, has anyone ever had these side effects? I don't know if I am just giving myself anxiety about worrying and possibly these are just symptoms from my crazy mind. I have also been on Prednisone (35mg) for four months, but haven't had any problems until last night. 
 
I really want and need Humira to help me out of this flare-up. I have been suffering since I stopped Remicade in Feb of 2005. I so bad want my life back and I just don't know what to do?? All of these drugs scare me so bad. Any advice is greatly appreciated. Thank you so much...Lisa

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/23/2006 5:55 PM (GMT -7)   

Dear Lisa,

I am so sorry about your current situation & my heart goes out to you.

My 1st thought is:  Do you have an allergy to Latex? Or sodium phosphate; sodium citrate; citric acid or mannitol? Rubber?

The needle/cover & ingrediants have these in them & if one is allergic to any of them they can have the symptoms like you describe...mild though. A bad allergy would be way way worse than what you describe.  Could be a sensitivity but mild.

A heart beat of 90 to 96 is still within normal limits.  Normal P is 60 to 100. 

What was your BP?

I tell ya one thing...that's super smart that you took your P and BP.  What about your Temp?

Do you have any heart conditions? Congestive heart failure?

An allergic reaction YOU WOULD be worried about would be one in where there is swelling of the face, a severe rash, and dificulty breathing (like throat is closing).

Skin reactions can itch, be painful and last several days.  Compresses of cool towels may help.  These reactions may occur immediately or several days later.

I take Humira every 4 days...so 160mg per week. 

One thing I can attest to is that Prednisone causes the same symptoms you describe!  I have a tremendous time breathing (can't get enough in) heart is so rapid it hurts to beat in my chest! It's around 90 to 110 per minute. Lasts ALL DARN DAY! And so dizzy as well. Wobbling when walking, get vertigo...and this is from the steroids!  At 80mg/30, 20, 10 or even 5mg...that darn pred is just awful!  So maybe it could be that??!!

Do you feel like you're developing panic attacks?

Awe, Lisa I wish you well.  I so want out of this flare too.

{{{{{{{{{{{{ big hug }}}}}}}}}}}}}}}}

write back soon.  and ps: what did the doc say? have you contacted him?

sincerely,

erin



Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.

Post Edited (erin kachmar) : 7/23/2006 9:18:44 PM (GMT-6)


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 7/23/2006 7:57 PM (GMT -7)   
Hi Erin, Thank you so much for your kind response! As far as I know, I do not have any allergies to the above mentioned. This is good to know though. My blood pressure has been between 100/62-123/78. I think maybe it is just anxiety with the help of the prednisone. I can't believe that you take 160mg a week!! Wow! I sure hope that this has put you into remission?? No, I haven't contacted my doctor, I am afraid that he will immediately think that it is Humira and will not let me continue. I am desperate to get well, so maybe my thinking isn't too smart, however, sometimes I feel that we are better at diagnosing our symptoms better than they are. If things persist or get worse, I will defintely let him know.

Thanks again for all of your advise and information. I wish you wellness....((((hugs back to you too))). Lisa

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/23/2006 8:31 PM (GMT -7)   
Hey again Lisa,
Your BP you listed is good. :) Well withing normal parameters 90/60 to 140/90.
Mmmm, I understand about not contacting the doc about it.
Many people have a Vaso-Vagal response from injections. Let me tell you about it. It starts with a little apprehension, maybe clammy, sweaty hands & back/armpits, the heart seems and can increases in beats per minute but there is a DROP in blood pressure! Then there comes dizzy, ringing in the ear, blurry vision, maybe loss of vision, tightness of chest, loss of hearing, tingling in arms and hands, blacking out and eventually hitting the floor! It's a defense mechanism. Just the body shutting off for a few seconds.
Bummer is that if this happens outside people get rushed to the ER because outsiders have to always think that it may be a stroke or heart attack.
And this "phenomena" can happen during a procedure or even a few minutes after getting bloodwork or having an injection.
Anxiety, even though it might not seem we have it...can definitely cause an attack of panic.

Since you're on prednisone, that can raise your heartrate & BP & also screw around with the sugar...so you might get bouts of dips in blood sugar.
Have you tried injecting while lying down in bed? That's how I do it. And I stay there for at least 10 minutes as well, and I don't get up fast.

For Crohns...you mean that you're not taking 160mg/week? That loading dose is a 1 time thing?
Mine is initially for RA, but so happens it helps with CD too so when I was getting worse, rheummy upped the Humira to every week than to every 4 days.
No remission. In pretty bad shape....but hopeful still.
Take care Lisa
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 7/24/2006 7:08 AM (GMT -7)   
Erin, wow, interesting to learn about the Vaso-Vagal response from injections. This makes total sense. I am one who generally reacts to situations and falls apart later. So, hopefully my symptoms are a delayed stress response. I would think that if these were serious side effects of Humira then I would see an increase in blood pressure and pulse?? You are right about the prednisone, I have horrible bouts of sugar level dips.

I have not yet injected at home. My first injection was last week at my doctors office. They want me to have all injections at their office until they are confident that I will not have a reaction. Do you give them to yourself? I think I will have to have my husband do it. I am a chicken, especially because these injections can be painful if you don't go really slow.

I have a local G.I. and I also see a crohn's specialist at Cedar's Sinai in Los Angeles. My Cedar's doctor is the one who is handling the Humira. My local guy is not familiar with it. For crohn's patients, they begin with a one time loading dose of 180mg, then every two weeks there after 80mg. Because of lasts years issues with Humira, my size and my low tolerance to medications, they have decided to start me out with 40mg injections weekly. If things don't improve, then they will up it to 80mg.

I am so sorry to hear that you are not in remission!! Do you have crohn's too? I will keep you in my prayers. Thanks again for your help! Take Care.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/24/2006 10:47 AM (GMT -7)   

hey Lisa,

in regards to your question about serious side effects from Humira...the fever, severe body rash, and breathing dificulty would be the danger signs.  going by BP and pulse alone isn't that great to calibrate a response...because it is normal that our BP & pulse raise slightly when we are about to give/get injections anyway.  but it's always good to keep a check on BP...especially while on medications.

Yep, i inject myself.  my 1st injectables were Enbrel and then since last august Humira.  my docs know that I KNOW how to give injections, so they never bothered with the "in-house" demonstration.  i had lots of shots under my belt...so they knew i was competent.

i was still freaked out to give one to myself though!!!!!!! lol.  i shook, sweaty, nervous! geesh!  it is so weird self injecting!  giving a pt. an injection is much easier.  but after the first one....no sweat!

the Humira i inject strictly to the abdomen.  too little fat on arms or thighs.  and the amdomen hurts the LEAST!  it's great.  i do inject VERY SLOWLY!  less stingy that way.  never a bruise or any bleedinh either.

i think perhaps you can do it!  it boosts your confidence a lot!  something to be proud of.

i know what ya mean though.  my godmother has HepC and she said, "no way" to giving herself injections.  so i did them for her twice a week for a year...and then i put my foot down because i wanted to go on vacation. "you're gonna have to do it yourself toots!"  AND SHE DID!  and continued to this day too!

so sure it will take time...and when you're ready, you'll do it.

yes, i have Crohns.  was DX in august 2005. RA since???? i forget, but been on treatment with TNF since 2003? i'm starting to forget!

take care,

erin 


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


caprie
Regular Member


Date Joined May 2006
Total Posts : 22
   Posted 7/24/2006 2:01 PM (GMT -7)   
Hi Lisa Lee,
I am on Humira and was helped with the anxiety over taking it by everyone on this site. It does make you somewhat panicky taking a new medication.
I have had my 5th injection (husband does them for me) and so far have not had any bad reactions. I did have an injection site reaction after my 4th shot. It took a few days to go away and looked like a raised welt.
I just had my 5th injection about 20 minutes ago so I'll see how that goes. I take 40mg every 2 weeks. I do feel a difference in my joints but still have a couple of "trouble spots" that just don't seem to get better and keep me from doing things i enjoy, but don't want to complain. Sounds like alot of people here are suffering far worse and only pray they get some relief.
I do not have Crohns so I cannot speak about that but wanted you to know that i do take Humira and only wish you well on it.

Erin,
I hope you begin to feel better soon. Have you ever been tested for Celiac Disease or some kind of gluten intolerance?
I know it can really effect ones weight. I have been tested and the results came back very high for gluten intolerance.
I had a biospy done on the "villi" (i think that's what it was referred to) to see if it is damaged and that came back negative. But the blood test came back positive, so i still wonder if wheat has cause my rheumatoid arthritis. I guess i should try to avoid it but it is hard to do.

Well wishes for everyone suffering! Keep the faith!
Caprie

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/24/2006 6:58 PM (GMT -7)   
hey Caprie,
in fact, my PCP on thursday ordered that in my bloodwork. just to check. don't think i ever had a test/biopsie for it that i know of.
:)
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/27/2006 12:09 AM (GMT -7)   

cool  Lisa,

How's it going?


LisaLee37
Regular Member


Date Joined Apr 2005
Total Posts : 384
   Posted 7/27/2006 1:58 PM (GMT -7)   
Hi Erin...you are so sweet, thanks for checking on me! I had my second injection of 40mg today and everything went well. Just had a good size red rash on the injection site that is slowing going away. I spoke with the Nurse who administered my injections regarding my pulse rate and rapid pounding heartbeat (which by the way, has almost subsided now). She doesn't feel that it is the Humira and that it sounds as if I am tapering too fast off of the prednisone. I started tapering one week ago by 5mg (which is the same day that I had my first injection). She suggested that I taper every 3-4 days by only a couple of milligrams. So hopefully she is right and all along it was just the evil prednisone!

I hope you are doing well!!! Thanks again for all of your support. You're the best! Take Care. Lisa
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