Humira Reactions-Scared!

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.

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

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.

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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.

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

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.

Thank you! Best of health to you.

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!

Thank you Erin, for your support and encouraging words. Be well and best of health to you!

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   

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