Thursday, April 21, 2016

Rheumatoid Arthritis and a Rare Side Effect from Humira..

Hello =)

I have been thinking a lot lately about sharing a difficult time in my life with you all..

It occurred to me recently that as I was going through it and searching the Internet for helpful things, very little of it actually helped me in my situation..

I am 33 and have Rheumatoid Arthritis.
About 3 years ago my Rheumatologist began me on Humira injections.

I can't begin to describe how difficult it was to give my self this shot.
It hurt bad going in and was agitated for a couple of days afterward.
I give BIG props to anyone who has to inject or poke themselves on a regular basis. It is HARD!!
So I was on Humira for about a year. I seemed to be feeling better and wasn't in as much pain all day.
Which was Great!

Out of no where the palms of my hands started to blister up, then the bottoms of my feet did the same.. Small blisters that would seem to spread all over the palms of my hands (not my fingers too, which I thought was odd).. They would kind of pop then reappear.. (The exact time frames are a little sketchy because I didn't think at the time to write these things down.) My hands were bad but my feet were awful. They felt bad and made everything about my days difficult.

So my hands and feet were like that for a few months.... and then my hair started to fall out. 
I remember being in the shower washing my hair and there was more then usual wrapped around my fingers.. over the next 2 months my hair would continue to fall out in clumps. All the way to my scalp.. I was nearly having a mental breakdown over it..

I never thought I was this vain!!
I had threatened for years that I wanted to shave my head, but I could never actually DO it.. It was like Karma said ok, let's see how you like it!

Anyway.. I was calling my Rheumatologist to seek advise and was told to see a Dermatologist. (oh, and I quit taking Humira because in my mind it was THE DIRECT link)
I voiced my HUGE concern that Humira was the cause of my hair loss and was told that was not the case. He gave me some shampoo (that you can buy over the counter as well, I'll have to find the name of it)  It's something like "therapeutic shampoo- for severely dry scalp.. and that basically killed whatever was "about" to fall out and my hair came out in big clumps for a couple of weeks.
I couldn't scratch my head because it was so dry that big patches would just come out.. (I don't really want to be gross but I guess the whole point of this is that if ANYONE ever has a need, MAYBE seeing this could help.. So in light of that..) When my hair fell out it wasn't just strands.. When I say clumps, I mean that the hair was connected to the dead skin still.. so I had BIG raw patches on the top of my head..

As it turned out, what happened to me is rare and it was Humira that caused it according to my Rheumatologist..

By the end of the shampoo treatments (I had to let it soak on my head for 10 minutes a day for about 2 weeks) nearly the whole top of my head was bald but not the back or sides.. I was thankful for that, at least, don't get me wrong.. but I had to cut about 15" of hair off the back.. 
But I was planning my wedding and was so embarrassed to be in public without some kind of hat on ( I have never worn hats much, but during this time I owned about 4 and never did anything without one on my head..), that I decided that I had to get a wig.

THAT is not something that I EVER thought I would be shopping for..
My fiance made it clear that I was worth the money that it would cost (about $350 for a 3/4 wig)..
It was difficult for me to want to spend so much money on something that should have been so trivial..
I was lucky that not all of my hair fell out, so I didn't need a "full" wig..
I will say that I was able to almost match my hair color with the wig and that was important to me.

I don't have many pictures of myself during this time. I never wanted to look back on that time..

Except my engagement photos (with the hat of the moment) 

                                                 And our wedding photos (with the wig)

Having the wig really did make me feel much better on my wedding day. I felt almost normal. I had several friends say how great it looked and they couldn't believe that it was fake.

It is kind of hard for me to share these kind of details in this way.. All I could think of is that if SOMEONE had thought to do something like this maybe it would have helped me.
My hope is that it helps someone and that makes it very worth it! 

My hair has been growing back now (with out ANY more issues) for 2 years.. I look forward to the day in about a year when I can trim it all the same length again..

And hey.... I'll NEVER threaten to shave my head again... haha

That side effect changed my life.. I now have a hard time taking medications..
I have been subconsciously boycotting them since this happened. Don't get me wrong, I was trying to take the other medication that I had, but I had this mental block and every time I took it I felt completely sick..
Now.. KNOWing that I had this mental block should help me get past it, right?
So far, that has not been the case.
I understand that I will Probably not lose my hair again.. BIG Bonus, Right!?
Still, I struggle with that block..
So, until I get past that block and get back on something to help, I have to deal with far too many pains and aches, that can bring you to tears.
The laundry list of the areas that hurt is mind boggling. You would think that would help with this mind block situation..
Maybe now that I have aired my fear to the world I will realize that- I indeed am not alone.. Which is the whole purpose of this, isn't it.. To show YOU that YOU aren't alone..  

hmmm.... I'm sensing a connection.. ;)

So maybe I can take a little comfort in this myself, too!

If this post helped you in any way, please let me know.
I don't get much activity on my blog and it would be wonderful to know that this information really helped someone!!

Take Good Care and God Bless!!!!  

I also posted this month *Rheumatoid Arthritis- The Beginning* (Click Here to see that post) in which I tell of my early experiences as I came to realize that I have RA.                                              

1 comment:

  1. I found this blog after a long time which is really helpful to let understand different approaches. I am going to adopt these new point to my career and thankful for this help. buy humira online


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