Tuesday 15 November 2011

Why I hated Humira

I had the worst experience ever on Humira, so my story about it isn't a good one.  Just wanted to tell everyone that upfront.

When Enbrel quit working for me the Rheumy put me on Humira.  Now why she did this I will never know.  I mean as she was writing the script out she was saying I really don't like having my patients on this drug.  It is one I never prescribe, but she did it anyway.  In fact Humira is the ONLY drug I have been on that I felt I needed to make a written list about all the side effects I was having.

I had my first Humira injection on a Wed, within 48 hours I was in pretty bad shape.  I was unable to quit shaking.  I literally felt like I looked like someone with Parkinson's.  I called my Rheumy and she basically told me that I was wrong, this was in fact NOT a side effect of Humira, and I just needed to relax.  I was horribly upset by this because Rhaine had her first ever Kindergarten Assembly.  I was crushed and heart broken that I was unable to go.  I called my doc who got me in for an appt within a couple of hours.  My MIL came and took me to the appt.  My GP whom I adore.  He never blows me off and listens to what I have to say.  He spent a great deal of time with me in his office researching Humira.  I had been in a lot more pain since taking the shot.  What we found out was that Humira in some cases can cause a clinical flare.  There was nothing we could do about it other than up pain meds and just try and cope with the shaking.  Over the next 4 months the shaking did quit, but that was just the beginning of my symptoms.  My Rheumy continually blew me off about my side effects so the Week of my review appt I researched and came up with a list of Possible Side Effects from Humira list.

The Possible Side Effects Were:
Hives, Itching, or Skin Rash
Tingling and Numbness in extremities 
Headaches and Dizziness
Abdominal Paik
Agitation
Anxiety
Sores on Breast that won't heal
Confusion
Depression
Fast/Slow/Irregular Heartbeat
Hallucinations
Headaches
Mood or Mental Changes

Source : arthritis-symptoms.com/arthritis-drugs/humira.htm

More Side Effects:

Muscle Cramps or Spasms
Night Sweats
Problems Swallowing
Trouble Thinking
Unexplained Bruising
Joint Pain.

Side Effects I had while on Humira:

Mood Swings
Irritability 
Headaches
Dizziness
Involuntary Limb Movement
Petechia
Anxiety
Panic Attacks
Increased Pain
Hand and Finger Numbness
Abdominal Pain
Sores or Pimples on Breasts
Losing Words or Thoughts.

When I walked into the appt I was expecting that she would argue with me.  I told her I had a list of side effects and which ones I was having.  She immediately asked if the Humira was making me feel better at all.  I looked at her and asked, "Well let me ask you this, according to the blood work am I even eligible to stay on this drug?"  The answer was No I wasn't  I wrote a journal entry after the appointment.  This is what I wrote.

Wed 11 August 2010

Saw Dr Wong, Humira is not working and with my bloods & joint review I fail Medicare Standards to keep using it.  She wants to put me back on MTX 7.5mg.  Then if I can tolerate that well, put me on Rituximab.  I have researched Rituximab and I don't want to try it.  She said If I can not tolerate the MTX then my only choice is Actemra.  It seems like a better option from what little research I have done.  I have to be off Humira for 8 weeks to begin infusion treatment.  I can double my Tramadol If I need to.

I then wrote out some research about the drugs. I won't go into that in this entry because my next entry will be about Actemra.

So when everything is said and done, Humira made me feel horrid.  I was in worse shape after 4 months on it that I was after years of NO treatment at all.  Everyone kept telling me I just needed to give it time.  When in my heart I KNEW from the first injection that It wasn't working.  I  knew being as bad off as I was, was a bad thing.  I didn't want to take a drug that made me miss things.  To this DAY I still feel miserable about missing Rhaine's Assembly that day.  She was a bear, and they did a small play about Goldilocks and the Three Bears I think.  I will never get that assembly back and that pisses me off.

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