My journey with Humira

So 2 weeks ago I switched from Enbrel to Humira. I had been on Enbrel for over 6 years. It took me from 90% covered to about 20% covered with about 3 or 4 flair ups over those 6 years. The last one was enough. I knew there were more meds out there and I was ready to try something new. The first shot of Humira stung so bad!!! But in the last two weeks I have noticed a difference.I did get a terible sinus infection two days after injection. Here are pics of two weeks ago

Tonight I gave myself my second Humira injection this time leaving the med out for about 30 mins and using ice on my abdomen to see if that would help reduce the stinging. It helped but I still felt the sting of the medication.

Here are pics of today

12/06/09 FOUND OUT TODAY I AM PREGNANT!!!!! So far skin is doing great!!!






Today is February 27th 2010. I have been on humira about 15 weeks and I am 15 weeks prego!
My skin is so clear. The injections still sting like crazy but luckily it is only every 2 weeks I have to deal with that. Here are some update pics!

4/24/10 I decided to sign up for a Humira pregnancy observational study. This week was our 23rd week ultrasound and they saw enlarged lateral ventricles in the brain measuring at 19mm and 22mm. Normal is under 10mm. They sent us to a specialist where we were also told the baby has a focus on the left ventricle of his heart. With the two findings they doc was concerned that this may be a chromosomal issue. I decided to have an amniocentesis done and we will find out the results on Monday. If it is not chromosomal then the baby will more than likely have hydrocephalus and require a shunt at birth. The outcome for these children is anywhere from normal to cases of mental retardation so we are a little on edge with not knowing what the future holds! With the Humira study they will call me two more times and do interview and then send a doctor to my house after birth do do measurements and assess the baby. The genetic counselor called to see if there were any studies for me because there isn't a lot of info out there for pregnant moms and they have a study going on right now with 10 moms and none of them have reported any birth defects. So with that info they sugested that I keep taking humira and that it was more risk to me if my skin was cracking open and bleeding while working as a nurse.

5/3/10 We found out that he has a Chromosome 6 deletion and a Chromosome 2  duplication so it has noting to do with the meds I have taken. Very rare, They are checking my husband and my DNA to see if we are carriers of the translocation gene. We should find out those results Friday. 

 

6/3/10 So the final official diagnosis for my baby is that he has an unbalanced translocation on his chromosomes 2q 31qter duplication and 6q 23qter deletion. He is missing part of number 6 and has an extra part of number 2. After the amnio and further DNA testing they found that my husband is a carrier of the balanced translocation. (His number 2 and 6 just broke off and traded places and he has all of his chromosomes just in a different order...translocation.) My baby has unbalenced translocation:( So they don't know what is in store for him. So far he will have hydrocephalus for sure. The good news is that the Humira, Enbrel and Tegison did not cause this.

My Psoriasis is doing great. I am CLEAR! even with all the extra stress of this pregnacny. I have even forgotten shots and it has not flaired up like on Enbrel. If I wouldhave missed a dose of enbrel you could tell, but Not with humira.



7/3/10 My Psoriasis is back behind my ears, one spot the size of a dime on my lower back, one larger spot on my upper back, one eraser sized spot on my R lower leg and unfortunately In a not so pleasant area... Has been very dry/itchy lately, but it is better than having it on 90% of my body! So i'm not complaining I'm just reporting how the Humira is doing! I'm 33wks pregnant right now and ready for it to be August already! OTIS called me last week to do an update on the pregnancy while on humira. They will contact me again after he is born.


9/21/10 So with all the stress of my baby being in the NICU and having surgery after surgery....My psoriasis has come back full force. I was off humira for 5 weeks when Alex was born. I hadn't had it in 3 weeks when i went into labor (because i forgot my shot the week before....i was going to take it that day...but my water broke) I had a C-Section and the doc said to stay off of humira for two more weeks. So I did....then 4 weeks after he was born the surgerys started (he has had 7 since birth 10 weeks ago and has many more to come) my psoriasis is back everywhere.....small little spots that are turning into large areas of red itchy madness:( Too much STRESS


10/20/10 Lot of stress since my last post. My baby boy who suffered and fought a hard battle is now an angel in heaven. We lost baby Alex 10/2/10. He was able to come home with hospice for one day, saw the sun shine and got to be in our home before he passed. So needless to say my psoriasis has flared worse than ever!... Went to my dermatologist today. He wanted to start me on Stelara but said that since we were possible going to try again to have another baby in the near future that he would hold off on that since is is such a new drug. We talked about starting light therapy along with my Humira. I'm using my coal tar cream again and am concerned that my skin will burn. No pictures today but my legs look just like they did when I started Humira.

 

 

2/13/11  A few weeks after my last post my skin got better.  I doubled up on my humira for about three weeks and it cleared up and has been clear since.  Right now I am clear and I am taking my humira about every three  weeks becaue I forget to take it!  

 

 

7/25/11  Have been so busy I haven't been keeping this current.  We are expecting our second baby (girl) and she is healthy!!!  No chromosome issues.  She is due August 21st and I have been taking my Humira every 2-3 weeks through this pregnancy.  I did contact the OTIS humira study to volunteer my infromation again with the pregnancy.  So far my skin I would say is clear but I have a few patches behind my ears, on my scalp, on my legs and a few spots here and there that are not bad but they are there!   I don't have to use lotion after the shower, so that gives you an idea that it's not really all that bad!    Probably just the pregnancy hormones.  I do not plan on stopping my shots like I did after my c-section last year.  My Psoriasis came back for awhile due to the stress and going off of Humira for 5 weeks.  So even though I will have another c-section I have planned it so that I take a shot one week before the scheduled date and will take a shot one week after.   So, far I LOVE HUMIRA and hope it keeps working for me!!!

 

 

 

 

 

9/5/11   So I had my baby, Khloe and she is perfect!   My Psoriasis flaired three weeks after having her and at the same time I got mastitis in my right breast while breastfeeding.   I am now five weeks out and my psoriasis isat it's worst!  I'm taking my Humira shots as I should but they are not helping.  I am under a lot of stress with being out of work and out of money but by far not as much stress as last year when we lost our baby boy.   So I don't know what is causing this flair to be soooo bad!   I went to urgent care yesterday because I knew I needed a steriod.   :(   In 2007 I flaired while on enbrel and had to have sterioids and it felt like my knees were being ripped from my body when I was tapering off of the steroid.  I hope this does not happen again.    But, I knew there was no way I could return to work on the 12th with all of the swelling in my legs from this flair up.   Here is a pic of yesterday only five weeks from my last set of pictures and It has spread over my entire body like the little small bumps where my ankles should be!

 

 

 

9/9/11   So I have been on prednisone for several days now.  The swelling has gone down some but my skin has gotten worse.  Tuesday 9/6/11 I went to see my rumatologist and he upped my Humira to every week.  I have had Humira two weeks in a row now with no improvement.   Today 9/9/11 I went to see my Dermatologist's PA who gave me an RX for Clobetasol Propionate Ointment USP 0.05% steriod cream to use three times a day and they want to see me back on monday.  The cream makes my skin feel softer.  There is no elasticity over my knees or ankle area and it is hard to walk and my nuckles are very cracked.  I have never had Psoriasis on my hands and feet before and it is a new expericence.  (expcially washing your hands.....very hard and painful to do!)   The doctor today said that I would probably have a flair up when I go off my oral prednisone....I'm thinking how much more flaired can I get!   Here are some pics from over the last few days:

This above is 9/6/11

 

This is today 9/9/11

 

 

 

9/12/11 Saw my Dermatologist today.  He recomended either light treatments (which never worked for me as a kid) or methotrexate (my mom took this for 20 years for her RA and Psoriasis).  I decided to try the Methotrexate for a 6 month trial.  We taked about Stelara but he seemed to think this is the Guatte (spelling??) Psoriasis all over my body and it wouldn't respond.  He said it more than likely flaired due to my mastitis infection three weeks after my c section.  Funny that my mastitis was due to psoriasis being on my nipple which caused it to crack open and caused me to get mastitis..... Psoriasis is pure hell.  From my knees to my ankles is plaque psoriasis.  I am going to continue to take Humira once a week for 4-6 weeks and see if that helps. I go back to my derm in two weeks.