"Where there is creativity, there is hope." ~ Donna Karan

Sunday, November 20, 2011

One week on Humira

It has been seven long hellish months since back and rib pain caused by Rheumatoid Arthritis turned my life upside down. I think it's fair to say that the last half of this year has been incredibly tough, not just physically, but emotionally also. Pain is draining and it effects every aspect of your life, like it or not.

A huge part of my life which has suffered partly because of the back pain has been my social life. There have been very few times where I have felt well enough to enjoy time with friends and have the opportunity to meet new people. I haven't been able to work, and doing odd bits and pieces around the house has been quite the struggle some days.

I hold high hopes that things will change for the better and that Humira, my new drug, will enable me to have better quality of life.

Humira (Adalimumab), is a TNF inhibitor. It has proven to be important in down regulating the inflammatory reactions associated with autoimmune diseases. (1)

I finally received my script for Humira after patiently waiting in pain a little over a week ago now, and, boy did I have a terrible time while waiting. Spending several months on and off codeine is in no way pleasant, let me tell you. Just last week the pain became so unbearable that I had to take four hourly doses which barely helped at all, and so, I inevitably ended up begging my GP for pain relief to tie me over until Humira starts working effectively.

Thankfully, my doctor sensibly upped my Prednisolone dosage, which has been an enormous help. I no longer have sharp shooting pain in my chest and I am sleeping soundly. Bliss, I tell you. Bliss. Although, I have encountered a slight problem- the Prednisolone increase was to be only for a few days. I attempted lowering the dose once my pain was under control, and, yet again I found myself up in the night and the sharp shooting pain returned.

So now I'm in a pickle. I'm stuck on a higher dose of Prednisolone and my rheumatologist is wanting me off it altogether. I was only to spend a month on the stuff and it's turned into four. I'm starting to gain weight and my face has been the victim of breakout and blemish galore.

I'm trying to ignore the potentially harmful side effects of staying on the drug long term, but, until Humira kicks in, I really have no choice. It's the only thing providing me adequate pain relief, and that's all that is important to me right now, because I just can't deal with the coursing pain through my chest, back and ribs anymore, I just can't.

I had my first Humira shot last weekend. My rheumatologist informed me that after receiving my script, I would attend an appointment with a Humira nurse who will help teach me how to self inject. After enrolling in the online support program, I found this not to be the case. I'm pretty good with needles- they don't phase me in the slightest, but I was a little apprehensive about sticking myself with one without physically being shown how.

I was going to make an appointment with one of the nurses down at my doctors surgery but being in pain, I just couldn't wait any longer, and the instructions in the booklet which was provided seemed pretty easy to follow, so I just got my brave on and did it. A girl's gotta do what a girl's gotta do.

Yep. That's right. I grabbed some stomach flesh, pushed the inject button on the pen and then watched myself bleed. It was quite the adrenaline rush, and being an adrenaline junkie, I actually kind of enjoyed it. Does that make me weird? The sound of the liquid going in was so cool! And the best part? It hardly hurt- it just stung a little.

So, Humira has been in my system for a week now and I'm due for my second shot this coming weekend. It hasn't done anything for my pain so far but I guess it's early days yet. It can take up to three months to see results, but I'm really hoping I don't have to wait that long as I really need to get off Prednisolone. As soon as possible.

Have I had any side effects? Heck yes. I'm trying not to read the scary list of side effects as I don't want to make myself paranoid but it is such a strong drug so I guess I do need to be more weary. I'm quite worried about my lack of taking this drug seriously- I just think it's funny.

Well I guess you have to try and not worry about all the potentially dangerous side effects or you'll worry yourself silly. There's no point being afraid of an increased risk of getting cancer or infections, when you really have no other choice but to take the drug.

About an hour after I injected, I endured horrible side effects- muscle aches, and fatigue, namely. But, hey, what's new?! I'm still struggling with these side effects a week later and to be honest, I feel absolutely horrid. I'm not quite sure if it's normal to feel this dreadful on Humira, but if it keeps up, I'll have to discuss it with my doctors.

Some days are awful- my muscles ache more than usual and I've noticed that my joints hurt more too. The irony. I'm used to feeling terrible, but Humira has me feeling terribly unwell. I just hope this passes. I'm hoping once my body gets used to the drug, things will start to settle down.

I guess feeling horrible is to be expected. It does, after all, suppress your immune system. It's no wonder I'm feeling so weak. I did feel quite unwell when I started taking Methotrexate, and with time, the side effects disappeared but I just didn't expect Humira to take it out of me as much as it has. The good thing I guess is that I haven't had horrible headaches like I did with Methotrexate and I haven't had any serious side effects so far. Knock on wood.

I will admit that I am slightly worried that my second shot will increase these symptoms ten fold, but I am holding onto hope that this drug will be a success. It will be nice to be able to do simple things like wash my face, drive, blog, and do laundry again without much pain.

(1) http://en.wikipedia.org/wiki/Adalimumab


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deb aka abcsofra said...

I am not sure if you tried Enbrel but if Humira doesn't cut it, maybe give Enbrel a try. Just be sure there is a window between the two medications. Humira did not do well for me but Enbrel did much better. I did Enbrel first. I also have that back and rib thing and always did with the ribs. Lately I have alot of tendon and/or muscle inflammation and I am not sure what to do about it either. I have had ra for 13 years now. This back/rib thing is getting alot worse for me though. My heart goes out to you sooo much. I also do the pregnisone but that is my only med for my ra besides tramadol. I have terrible med allergies I have had to deal with and for me dealing with the ra has been better then with the side effects/allergic reactions to all the meds. Your ra doc should be more empathetic then he/she is and I am wondering why your gp had to give you the script and not your ra doc. That is wrong in my opinion. Your ra doc should be managing the pain and sudden flares not your gp doc. If this ra doc is not available or leaving you hanging out there in pain...find another ra doc. This journey is a life long one and we need and deserve top flight doc care and compassion. (((HUGS)))

Alanna said...

Good on you Emily!! I'm a darn nurse and I can't handle injecting myself! Luckily I have a boyfriend who is more than happy to stab me with a needle ;) ;)

Reading about your side effects reminded me of my first month with Humira. The muscle aches, nausea and fatigue WILL fade. My first fortnight was horrible and I remember thinking how crazy it was I was about to inject myself a second time. But it gets better :)

I've been on humira for over a year now I realised... doesn't seem that long! I had to renew my script just recently and decided to give the syringe a go this time. Very glad I did :) Boyfriend still does it for me, but it doesn't hurt or startle me as much as the pen does. Also... thighs hurt less that stomach!

I'm looking forward to hearing how your humira journey goes and hopefully we can continue to support each other :) I'm just an email away!!

Jo said...

Oh, I do feel for you! I've been on Prednisolone most of the time since I was 16 (my longest constant course lasted 4 years) so I really identify with your dilemma. It's a wonderfully helpful drug, but the side effects totally suck!

I have my fingers crossed for you that the Humira does the trick and starts to reduce the inflammation with your joints so that you can regain some of your social life. In the meantime, I enjoy 'meeting up' with you online!

Big hugs, Jo

Miss Chronically Creative said...

@ Deb- Initially we were going to give enbrel a try but it got switched to humira for some reason. That's great to hear that enbrel has helped you! It gives me hope that something will work if humira fails me.

I am so glad to know someone who knows what it is like to have arthritis in the back and ribs- it's just darn awful.

Most people don't seem to understand just how much I am struggling because I look perfectly well. It's really hard some days.

Oh you have to take tramadol, too. Ugh. :( that stuff is yucky. Does it make you drowsy? Yeah dealing with side effects can be extremely challenging- it's shocking that some of them are worse/more serious than the disease itself!

I did stress to my rheumatologist that I was struggling to cope with the pain on multiple visits but she just didn't seem to get it. So I just went to my GP because I knew she would understand better and listen and actually do something about the pain rather than leave me in pain and hope that the drug works soon (when it might not). I only went to my GP out of desperation and as a last resort.

Believe me, I have thought about changing but it would just be too difficult to do now as I've been seeing her for five years. Other family members also see her so switching is just impossible. And, besides, I did see another rheumatologist as a one off a couple of years ago for a second oppinion and I didn't like them very much. My rheumatologist is usually pretty great though and I get bulk billed everytime. Can't really complain, I'm pretty blessed!

@Alanna- Thanks! That is quite funny :) oh good, so I'm not going crazy! Good to know. I'm only just starting to feel a little more human and I am freaking out about having to do it all again this weekend! Eeek.

The pen did startle me a bit but I found it just fab to use. I'm the opposite to you- I'm too chicken to do it on my thigh. I have a bloated stomach due to meds and endometriosis, so it's the perfect pin cushion!

Thanks for making me feel better and thanks for the support!

@Jo- Four years on prednisolone- yikes!! The longest I have been on it is a year. I wish I could stay on it forever because it helps me so much but that said, the side effects do truly suck. It's kind of a love/hate relationship.

Thanks so much! I'm looking forward to getting to know you.

Dragonfly Treasure said...

My Son had RA and AS. He was given Humira also. But couldn't stay on it..when it would be time for the next dose he would have a virus or cold. Then when he was better to go on it again the whole thing would repeat. He was never able to take it continuesly enough to see if it would help. Very frustrating. When he has an AS flare up his eyes and his hands swell. Since he is in the IT guy for a bank it really plays havoc with his job. His eye balls feel as if the are being pushed out from behind, so seing is difficult.
Prednesdone is the only thing that really makes him feel better. He only takes it when he knows theres something comming up that he needs to feel goo for...ie. his wedding and honeymoon ;)

I pray it helps you and you are able to get some relief.
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