Rheumatoid Arthritis and losing hope

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enbrel2For the last month I have been very quiet, mostly because I found myself getting to a point where I was losing hope.  Depression was starting to sink in.  I believe almost everyone who suffers moderate to severe Rheumatoid Arthritis will suffer some depression at some point.  For me, it happens when I lose hope.

Admittedly, it’s been a rough few weeks.

I had to drop my dose of Arava, because my liver function tests came back bad.  Then I developed an incredibly itchy rash on my arms.  Cause unknown.

Adverse reaction to Arava?  Allergic reaction to something else entirely?  Lupus symptom?

Whatever the cause of the rash, because of my prednisone use, my skin is very thin and breaks easily.  Everywhere I scratched (even though I tried hard not to!) I would bleed.  Also because of the prednisone, I heal very slowly.  After a few days my arms and legs were covered in itchy, bloody sores. My general practitioner advised me to start tapering down off prednisone, so my skin could heal.   So I started a fairly quick taper…1mg every 3 days.

By the time I got to 11mg the joint pain was enough to make walking difficult.  The fatigue came back with a vengeance, forcing me to rest more, and achieve far, far less.

And the unbearable itch just capped everything off.

Next my skin started developing nasty, infected looking pustules, which turned into open sores, like boils.  The steroid cream wasn’t helping.  I got to see rheumy for another one of the ‘emergency’ appointments I love so much.

She suspected a staph infection.  And told me to up my prednisone back to 15mg right away. And so ended another painful prednisolone taper!  She also apologised, there had been a mistake with my Enbrel application, and it had only been sent in the week before.  She told me it would be another two weeks until we had an answer.  I had already been waiting five weeks…I almost cried then and there.

Pain, fatigue, unbearable itch…and human error…all conspired to reef my positive attitude right out from under me and sent me limping to my couch, with my heated throw and my teddy bear!

I lost hope.

Staph was confirmed by a skin scrape test.  I started antibiotics.

The best part of all was that even if Enbrel were approved, I couldn’t take it.  You cannot take a biological with an active infection.  And I still didn’t know IF Enbrel would be approved.  My rheumy just didn’t sound confident to me.

I lost hope.

I knew what I needed to do to pick myself up again.  But truthfully, I was just so tired, I didn’t have the energy to do it.  And I didn’t think I had anyone in my life who would help me.

Feeling utterly and totally alone didn’t improve my mood.  So I took a chance and called a friend.  And she listened.  She gave support.  She understood some.  She didn’t change the subject to her problems.  She didn’t hang up the phone.  I’m grateful.  I felt a little better.

And then Rheumy called to tell me that Enbrel has been approved.  The script is in the mail.  At the end of this course of antibiotics, I can start treatment.

I was stunned.  Hope came flooding back. I could instantly feel the black cloud start to lift.  I hadn’t even realised that the main cause of my depression was not knowing whether Enbrel would be approved.  That phone call changed everything.  I started to laugh.  And then I cried.

And then I danced around the room, knowing that there’s a very good chance that once Enbrel has a chance to take effect, I could be dancing with much less pain.

I have hope.

10 COMMENTS

  1. Good news also that it was only a staph infection. I know that’s not really “only” but there are things that are a bigger worry though uncommon. It’s great that a few good things happened for you at once.
    Your blog post covers a subject that we all face and that doesn’t get much attention. It was a good choice of subject.

    I have read that you have to taper pred very slowly if you have been using it for a long time. It’s a tough situation.

    • Yes, my staph is not the dangerous kind. My understanding is that the staph you pick up in hospitals is the antibiotic resistant type and can be dangerous. But mine is responding nicely to the antibiotics…healing well now. I will probably be able to take my first Enbrel shot tomorrow….fingers crossed!!!

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  2. I can relate to your story. Sometimes it does seem hopeless that the pain will never end. I too cry myself to sleep at times. Then I look at my kids and know that I have to push on. So excited for you that the enbrel was approved! Great news!

    • Totally with you there, J. Some days, if it weren’t for my kids, I would just stay in bed and give up. But we always have to hang in there…things turn around. I hope things improve for you too…some pain relief…less nights crying…less pain so you can enjoy your kids 🙂

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  3. I am so thrilled that the end of this post was so much more positive than the beginning. I know how all those smaller things can mount up and when you are in such pain can bury you and make you feel as though there is no way to turn. I also know how such intense itching can drive you to despair, I’ve experienced it myself though I believe mine to have been med related (settled after I relented after a few days and took an anti-histamine), wish I’d thought of that sooner!! God bless your lovely friend for being there for you too.
    I hope that the anti-biotics work fast and I will be saying prayers that the Enbrel will be ‘the one for you’, everything crossed here, metaphorically of course!

    • Thank goodness you have HOPE back. It is a terrible roller coaster ride we are all on, isn’t it? No one truly understands but those of us who go through it. Last evening I posted to a new FB friend that I had a scratchy throat and felt a little feverish. Also mentioned that I have rheumatoid arthritis… don’t think she knew… and that that caused my immune system to be wacked out. Anyway, she sent message back and said GET WELL SOON. If only it were that easy… get well soon. I hope to meet her face to face soon… she only lives a few miles away.. and I’m hoping for the opportunity to give her some insight into our daily struggles as the general public does not have a clue.

      I wish you luck with the Enbrel. It was the first biologic I was on and it was wonderful for about 4 years. Since then I have never had the level of success that Enbel gave me.

      Keep HOPE going. It’s funny how such a little hope can help us so much!! HUGS!!

      • Hope is everything to me right now. Keeps us all going! Sorry Enbrel stopped working for you, what are you on now? Hope you find something that works as soon…’Get well soon’. People say that all the time…meaning well, ofcourse. But yes, wouldn’t it be nice??? I hope you feel at least a little better soon though 🙂

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    • Thankyou Gillian…its really amazing how just one bit of good news can turn everything around. And one good friend is all you need sometimes. I wish for everyone to have that…though I know we often don’t. It looks like I can start Enbrel tomorrow – infection is clearing up nicely. So Yay!!! And thanks so much for your good wishes 🙂

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  4. I wish I could give you a big hug-not really great for either of us- ow, ow, ow, but I am sending you a great big RA Emotional hug. I know how you feel, I have days when I ask why did I survive cancer to have to put up with this, BUT- and its a big BUT (especial now with the prednisone!) life is worth it. I know on the days when you feel that low you really do not give a shit- BUT you have to remember what a great inspiration you are to your blog followers, we might be a crippled, drugged up, crazy group of creaky people, but we love you. We look forward to each entry in your blog, and are always thinking of you. i wish I could meet you, we could hire a couple of mobility scooters, and tear up the pavement on our way to have a coffee. We could give those old ladies with oesteo a run for their money.. i am hopping you respond well to your new treatment-abet a delayed start. I see my Rheumo on Weds- the Cimzia is not working-so hoping to move up to the next drug. Never forget how much you mean to us and how much we look forward to hearing from you. Keep STRONG. xxxx

    • Oh Sarah, you are so lovely! thank you so much. You have really given me a lift! I could well picture us giving the osteo old ladies a run!!! I would love to meet you – you have such a sense of humour and positivity, despite all that you’ve been through. Good luck with your Rheumy – I really hope that the next drug is ‘the one’ for you!

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